Gavin's Voice

So much to say & share.....

2011-10-28T11:47:00.003-04:00

.....not enough time, energy, or brain power to say it or share it!

So, here I go.....prepare for a long post!

Lots going on with Gavin, and our family the last couple of months. Mostly good and exciting things.....along with a little bit of a scary thing. And of course, the dreaded sickness that invades a family of six!

The dreaded cold has made it's way through our family, sparing only Jacob so far. Gavin and I have it right now. I have felt miserable the last few days, especially in my head....it feels like it's going to explode! Gavin seems to be tolerating it better than I am, but he does sound horrible! (Very stuffy and a deep cough) Hopefully he continues to tolerate it so well....he's such a trooper, still giving smiles even though he must feel lousy! He's obviously more tough than his Momma is! I guess when your chest is cut open a few times, it takes more than a simple cold to put you down!

Some great news we got a few weeks ago is that Gavin's 2nd degree heart block has GONE AWAY! Some time between, 4 1/2 years ago when his pacemaker was put in, and now, his electical activity between the upper chambers of his heart started to communicate again with the lower chambers of his heart! This amazes me! ONLY GOD! Praising Him for this miracle!

The scary part of this is that because he no longer has this block, the cardiologist tinkered with Gavin's pacemaker settings and decided to have his heart do all the work, instead of the pacemaker helping out. His pacemaker used to do 99% of the heart's firing, but now it will do close to 0%! This means we have to really watch Gavin for symptoms of heart block.....and this scares the Momma! I am used to relying on that pacemaker, knowing it would take over if Gavin's heart went crazy! Yikes! It will still kick in if Gavin's heart rate goes below 60 beats per minute, but it will only beat at 60 beats per minute continuously. This means that Gavin could feel really dizzy, and even lose consciousness if it stays beating at this rate. So, we have to watch for signs that his heart isn't beating as fast as it should be....which is around 100 beats per minute on average, for Gavin.

But, this is definitely promising news! It is so much better for the heart to beat on it's own, like it does in most of us. Gavin's heart muscle will benefit from doing the work, instead of the pacemaker doing it!

Here are some other things that our family has been up to:

I'll start with a few pictures from Gavin's 5th birthday. (Yes, I realize it was a month and a half ago....I told you I haven't been sharing much on the blog!)

Did you notice his "cake"?

Since Gavin doesn't eat by mouth, and he doesn't really like it when we give him tastes of anything anyway, I "made" Gavin a Compleat Pediatric "cake". That's all he eats anyway! :) And, I'm quite sure Gavin enjoyed this better than having to taste the frosting like we usually have him do....he's not a fan of anything in his mouth! Plus, it sure was an easy "cake" for me to make!

Another thing our family did was to walk in the Make-A-Wish walk. We wanted to give back just a tiny bit of what they gave to us! I still can't believe the trip our family was able to take, due to this charity's efforts! They are such a blessing to so many families!

Gavin also started school again. This year he is having school at home. A teacher and therapist come once a week, and he and I go for a group class once a week at the school. We are hoping he stays healthier with this change. He was sick so often last year!

Here is Gavin doing some therapy at home:

This is tiring for him!

But, isn't he just precious?!

We also walked in the Step Up For Down Syndrome walk this month. Our state changed the name to this, instead of calling it the original, "Buddy Walk". The name may have changed, but the fun we had, and the cuties we got to see stayed the same!

So, as you can see, we've been keeping busy.....especially when you add in doctor's appointments, school, sports for our older boys, and homework, etc. Life sure is busy! But, we are doing well and so very blessed!

One more thing, please consider donating to help an orphan get home to a wonderful family waiting for her!

This is Olga. She lives in Russia and has been in an orphange all of her life! She will soon be transfered to an institution where she will no longer be able to be adopted. Some countries do this when children turn about 6 years of age, especially if the child has special needs, because they consider them "unadoptable". It breaks my heart knowing that children may never have a family to call their own!

But, the good news is Olga has a family here in the states waiting to be able to go get her! They are so close! They just need about $1200 more to reach the amount they need to go get their daughter! They have worked so hard to raise money, but they can't do it all on their own! Please consider helping them get to Olga before it's too late! Even $1 helps, if that's all you can give! Their adoption paper work expires in November, so time is running out! Please help this sweet girl get to her family! Go here to donate something to their cause. And, most importantly....PRAY!

"Therefore by Him let us continually offer the sacrifice of praise to God, that is, the fruit of our lips, giving thanks to His name. But do not forget to do good and to share, for with such sacrifices God is well pleased." Hebrews 13:15-16

Part of the Club

2011-10-25T11:10:00.001-04:00

This weekend I was reminded that I'm part of a club. This club is very inclusive, and you can't join unless you meet certain qualifications. Most people don't even want to join the club.....but once they are wisked into it, most are quite happy to be a part of it.

I was reminded of this fact when I was at Costco with a few of my boys. Gavin was tucked away in his stroller. As we walked the isles of the store, I noticed a lady looking at him and smiling. This always makes me happy, because I love that Gavin can make others happy just by being him!

The boys and I finished our shopping and we headed to the check out. As soon as we walked away from the register, we were greeted by the same lady and her husband. They were holding up a cell phone with a picture of a boy on it. They both had a huge smiles on their faces, and said, "We have one too!" I knew exactly what they were talking about, even before I studied the picture on their phone. They were refering to their "winner."

If you don't know what a "winner" is, here's an explanation: I was taught this term a couple of years ago by a Mom who has a "winner" of her own. A "winner" is a person who has Down syndrome, or some other form of special needs. This lady told me that this is what she refers to those who are born with a little something extra. And, I couldn't agree with her more! They are all winners in my eyes!

Anyway, this couple at Costco went on to tell me about their boy, who also has Down syndrome. We talked a few minutes, sharing stories and diagnoses....and it was as if we'd been friends forever! We just "got" each other...all thanks to our special boys!

We are blessed to be part of this club! Our boys are the reasons we are allowed membership. We may not have wanted to join the club, but here we are.....and we are like family because of it!

In fact, they were having a 6th birthday party for their son the next day, and we were invited to the party! That's how close these friendships are in this special club! Our family doesn't even get invited to some of our own family's birthday parties, but here is a family we had just met....and they invited us to join them! It's because we ARE a family! We have an instant bond, because we can relate to each other like no one else!

We've been through the heartache, the daily struggles....and we know the feelings that have formed deep inside us, thanks to having our special children!

We may not have chosen to join this special club, but now that we are in it, we embrace the goodness that comes from being a member. We are given challenges that most people will never understand. We are taught lessons that most people will never learn! We are also given a love that most may never feel.

I am so thankful to be part of this club.....even through the hardships, long nights, long days, the worry, and the demands that have been placed on us since becoming a member of this organization! And, I am so thankful that God brings others into my life who truly understand the life that He has called us to live!

Next to the membership that I have been blessed to be called into....that of being a member of God's Kingdom.....I am most thankful for the kinship I feel with those who have been placed into this special calling.....The calling of caring for one of God's most weak and precious creatures! The calling of being a special needs parent! Once you are part of this club, and once you get used to the new normal that comes with this calling, I guarantee you won't regret it in the end!

May God bless all of you who are part of this club, and may He give you peace, strength and grace as you fulfill the work He has intended for you! Thanks for being part of my family and for supporting us along the way! Hugs!!!

"And if one member suffers, all the members suffer with it; or if one member is honored, all the members rejoice with it." I Corinthians 12:26

Purpose-Filled Life!

2011-10-17T15:04:00.000-04:00

It has been one of those days! A day that I sit and stare at Gavin, wishing that he had more purpose in this life. Wishing that he could sit on his own, walk, and talk. Feeling sorry for him.....and sorry for me. Wishing that Gavin hadn't had the severe stroke that he had...the one that has robbed us from a child who could have had so much possibility in this life! The stroke that I think back to every once in awhile, and think to myself, "What if the doctors had listened to me?! What if they had done what was needed to prevent this from happening? What if Gavin was just the 'typical' child with Down syndrome........What wonderful things would we be accomplishing today?"

Yep, one of those days!

Then I read the following poem:

Dear God,

I am just a little boy
I don't know how to pray
But please tell me, Lord
... Why did you make me this way

He explained,

I gave you no sight
So others could see
That My glory is planted
In the smallest of seeds

I gave you no voice
So others you could teach
That even in silence
I can hear you speak

I gave you a life that others
Would not wish to have
So they would be grateful
Instead of boastful and proud

The body of a child
The purpose of a man
You were lovingly created
To fulfill the Master's plan

So close your eyes, my child
I will give you dreams
For someday you will fly
And you will not need wings

Lisa J. Brown

Some days I forget just how purposeful Gavin's life really is! I get caught up in the things he can't do, instead of the purpose he is fulfilling! Some people may look at Gavin and think, "What a shame." The truth is, God's plan for Gavin is probably greater than His plan for most of us.....and I am so thankful that God chose me to watch over Gavin until His plan is fulfilled!

Gavin may not appear to be able to accomplish much in life. He may have to work very hard to just lift his head up for a few seconds while he sits in an infant toy...

......but thanks to reading this poem, and thanks to the promises that God has made known to us.....I KNOW that Gavin is living a very wonderful, purpose-filled life! And, I am so very proud of him!

"To everything there is a season, a time for every purpose under heaven." Ecclesiastes 3:1

Step Up For Down Syndrome!

2011-09-26T20:31:00.001-04:00

It's that time of year again! Time to come out and walk with Gavin, and all of his cute friends! It's Buddy Walk time!

Except this year the Down syndrome Association of West Michigan has changed the name of our walk to..........Step Up For Down Syndrome!

Gavin would love it if you came out to walk with our family! And, even if you can't make the walk, you can join our team by donating to the cause.....or by thinking of our team, and all of those who have Down syndrome!

Here is a link that you can click on to donate, or to get information on when and where the walk is:

FirstGiving - Your fundraising

Thanks so much for your continued support of Gavin...our family...and all of our inspirational Down syndrome friends!

Gavin says, "Thanks for stepping up for Down syndrome!" : )

"Order my steps in thy word: and let not my iniquity have dominion over me." Psalm 119:133

Gavin's afternoon at the hospital

2011-09-23T18:16:00.000-04:00

Gavin and I spent the afternoon at the hospital. Here is a picture that I tried to take of Gavin while we were waiting in the waiting room:

He doesn't look very pleased about the whole thing, does he? Actually, he was quite the trooper! He did SO WELL, despite the fact that it took 4 pokes to start an I.V. He didn't cry at all unti the 4th poke......What a good boy! Then he finally said, "THAT'S ENOUGH!", and started to cry.

We were at the hospital to do a sedated heart echo, and also to have his pacemaker evaluated. They did the echo first. He has never had a sedated echo before, but this time the cardiologist wanted to sedate him to get a really good reading since Gavin doesn't lay as still as he used to. They used Propofol to put him to sleep. That is the drug that Michael Jackson died from. When they said they were going to use it, I said, "Wasn't that drug given a bad name by M.J.'s death?! You sure you want to use that one?!" They assured me it was safe, so I approved. After they put the med in Gavin's I.V., he was asleep in less than 10 seconds flat! It was kind of scary to see him go out that fast! But, it did make me aware why M.J. might have liked that drug! I sure would like to go to sleep, and stay asleep that well!

The initial results show that Gavin's heart is not enlarged (great news!), and his Mitral valve leak has not gotten any worse! This was a relief, because I am dreading the day that they say he is in need of his next heart surgery!

After his pacemaker was evaluated they decided to make some changes to the settings to try to preserve the battery life of the pacemaker, and also to allow his heart to work a little more on it's own. I'm praying this change doesn't create any ill effects! I asked his cardiologist if he really wanted to mess with a good thing, considering Gavin's history, but he thought Gavin could handle the changes, so hopefully he is right!

Gavin was also sent home on a 24 hour holter monitor, to make sure his heart is beating regularly, and at a normal rhythm. It looks like Gavin has a bomb strapped to him!

Nolan and Caleb feel really bad for Gavin. They think it's so sad that he has to wear this for 24 hours, because they said it doesn't look like it feels comfortable at all! I agree! They are also sad that Gavin had to be poked so many times today. It makes me sad to see them sad.....but it also makes me happy knowing they have such a sensitive spot for Gavin and that they love him so much! They are such great big brothers to Gavin!

I'm glad this day is over with! I was worried about Gavin being sedated, and I was also worried about the results we would receive. I knew that God had it all under control, but still, this Momma thinks she'll sleep much better tonight, knowing that surgery isn't looming over us any time soon!

Hopefully Gavin will sleep good as well.....but after the great nap he got while being sedated today, he may just decide to stay up and party all night long! : ) If he chooses to do this, I'll gladly stay up and party right along with my sweet boy!

Gavin was the talk of everyone who saw him at the hospital.....thanks to his cute football socks!

Aren't they adorable?!

And, isn't my brave boy a cutie as well?!

He makes me so happy, I just love him so much!

Thanks for praying for my boy! Hugs!!

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will gaurd your hearts and minds through Christ Jesus." Philippians 4:6

Five Years of Blessing!

2011-09-15T10:40:00.000-04:00

Happy 5th Birthday Gavin!!!!

We Love You!!!

I can't believe how blessed we are to have you in our lives!

We thank God for you, and can't believe that He trusted us with YOU!

You are such a gift! Love you sweet boy!!

"Every good gift and every perfect gift is from above." James 1:17a

How much should I tell people?

2011-09-09T10:33:00.002-04:00

This week I had a dentist appointment for myself. I took Gavin with me for the appointment. He sat in his stroller next to me while I was having work done, and he behaved himself so well that the dentist said he could pick a toy from the treasure box. I was thinking to myself, of course he was well behaved.....Gavin is always a good boy! But, I guess this is rare for a soon-to-be 5 year old boy. They are usually busy and can't sit still! Gavin is easy to bring along with me, because I always know right where he is and that he won't be getting into anything. But, the dentist seemed surprised by how great Gavin was throughout the appointment.....and this got me thinking.

When he offered the toy to Gavin, I was about to tell him that Gavin wouldn't really be able to play with any of the toys.....but then I realized that explaining Gavin's developmental stage would take too long, and it didn't really matter if the dentist understood why Gavin wouldn't play with the toy. So, I pretended to show Gavin the toys and ask him what he would like....and then I took a ball from the box, knowing full well that Gavin wouldn't be playing with it, but feeling proud that the dentist thought Gavin was a good boy and deserved a toy anyway.

I always struggle with times like these. How much should I tell people concerning Gavin? I know that they realize something isn't typical about Gavin.....especially when they ask me how old he is.....but do they really want to know Gavin's story? Do they really want to know that Gavin's brain is totally damaged by a stroke, and that he is unlikely to advance much further than he already is.....or do they wish to remain in their blissful state of innocence that all children progress, and this includes Gavin?

The last time I took Gavin to the neurologist, he was seen by a new person to that office. She started talking to Gavin like he understood what she was saying to him. She was asking him questions and explaining everything to him in detail. I do appreciate it when people treat Gavin the same way they would treat any other child, but should I have told her that Gavin can't really understand all that you are saying to him, and all you really need to do is just be gentle with him and talk to him in a kind voice, because he doesn't understand what you are about to do anyway. But, again, I just let her do her thing, without explaining everything to her.....because quite frankly, if you ask me, spending any more time in a doctor's office than I need to is quite unnecessary! And, taking the time to fully explain Gavin to her would have meant that we would be there longer than we aready had been.....and Gavin and I do not like spending our days at the doctor's.....we are there often enough already! So, I said nothing.

I did try to have Gavin play with the ball he got at the dentist office.....but he can't hold it, or control it. But, he did feel it and get some stimulation from it's texture.....so that's probably good for him.

Another time I wondered if I should explain things about Gavin was this past weekend. We were at a wedding, and there was a band playing music there. Gavin started to have a seizure, which makes him jerk and move irregularly. Most people don't notice that he is having a seizure, because it doesn't look like the grand-mal seizure that most people typically think is what a seizure looks like. But, one lady sitting by Gavin said, "He looks like he is trying to dance! How cute!" My first thought was to tell her, "No, he's just having a seizure." But, then I decided to just let her think that he was trying to dance.....because that is a much better thought to be left with, than he's having a seizure!

So, as you can see, I have a difficult time knowing how much I should tell people when it concerns Gavin. I love to talk about Gavin with others, but I don't want to overwhelm them with all that Gavin is. Plus, when I do tell them more about Gavin, and then I follow up the story with how blessed we are to have him in our lives....they usually look at me with pity or don't believe me when I explain how happy I am to be his Momma! I guess no one can truly get it, unless they have a child like Gavin.

I may carry a ton of responsibilty on my shoulders caring for his many needs, and having so many thoughts running through my head.....but I also get to look at this sweet boy each day!

I get to hold him and love him each and every day! And, despite the weight that is always on my shoulders, I am filled with such lightness when he gives me one of his infectious smiles! I may not know how much to tell people about Gavin, but the one thing I want everyone to know is that I am one very blessed Momma to have him in my life! : )

"I know that Messiah is coming" (who is called Christ). "When He comes, He will tell us all things." John 4:25

(In)dependence

2011-09-01T08:38:00.007-04:00

Our church puts out a monthly publication, called The Bethany Beacon. This month I wrote a little something for them to add to it. I wanted to update those at our church, who may not know Gavin's full story, on how he is doing. I also wanted to share my thoughts on how blessed we are to have Gavin in our lives.....and most importantly, how blessed we are to be dependent on God!

Since what I wrote pertains to Gavin, I thought I'd put it on the blog to share it with all of you! So, here you go!

Reflections on (In)dependence

This year on the Fourth of July, I began reflecting on our independence. Every year as this holiday rolls around, I am aware just how blessed we are to live in a nation where we are granted the freedoms that we, as Americans, are blessed to have! It feels so freeing to celebrate, what so many countries do not have the opportunity to possess. This year as we celebrated our nation's independence, I suddenly had a revelation about just how independent we are.

I have Gavin to thank for this revelation.

I am often asked how Gavin is doing. I enjoy sharing my sweet boy with others, and I look forward to talking about him with whomever shows interest in his wellbeing. One of the questions I am often asked, "Is Gavin crawling yet?" The answer to this question is way more complex than, "No, he's not." So, if you've ever wondered just how well Gavin is doing.....here is a short update on his life.

Gavin's life started out very fragile.......but we had no idea just how fragile he would become. At 7 months of age, after having several cardiac surgeries, Gavin was doing quite well. Things were looking up for him and our family, but while recovering at a local hospital, an unexpected mistake occured. Due to this profound error, Gavin suffered a hypoxic brain injury, otherwise known as a stroke. The stroke left Gavin's brain severely damaged. His entire brain was affected. There was nothing that could be done to correct what had happened. But, God kept him alive, despite the fact that doctors thought he wouldn't survive. We are very thankful for this gift!

This leaves us to the present day. Gavin turns 5 years old this month, and yet, he is only at a 4-6 month old level. And, he is unlikely to progress much further. In fact, Gavin is totally dependent on many for his survival in this world. He is dependent on a pacemaker and cardiac medications to keep his heart pumping. He is dependent on medications to prevent him from having seizures, and also for helping his lungs to breath properly. He is dependent on a feeding tube inserted directly into his stomach, in which to gain nourishment and fluids to grow and live. He is dependent on many doctors to keep him healthy and well. He is totally dependent on his family. In fact, without us holding him up into a sitting position, he would fall right over. He also depends on us to change him, position him, help him when he is gagging, administer his nourishment and medications, give him breathing treatments, move him from place to place.....and the list goes on!

Gavin is far from independent!

Some people might look at Gavin with pity, because he is so reliant on others. The truth is, Gavin is probably the happiest person that I know! He is a bright light in this dark world. He is totally unaware of his dependence on others. He is free from the worries that most of us spend our days concerned with. I believe that most of us like to think that we are in control of our lives. We go about our days, making decisions and thinking that we are achieving plenty of goals. This makes me think about the bumper sticker that reads, "God is my co-pilot." The reality is, if we think that we are in the driver's seat, we had better switch seats quickly!

Since Gavin came into my life, and since having to care for his many needs, I've been made aware just how dependent we ALL are! Gavin is very dependent on others, but I like to think that his life also presents an opportunity to show others what a blessing it is to be dependent on Someone Else! Gavin's dependence may be very obvious to us all, but the truth is, we are all dependent. We are dependent on the maker of heaven and earth, our Almighty God! And, knowing this fact can truly set us free! Relying on our dependence on the Lord, is the best medication there is! When we fully depend on God, we are given the worry-free and joyful existence that our son Gavin is blessed to live. I am so thankful for the perspective that God has given me since Gavin came into our lives! And, I can't imagine going through life without my dependence on Him!

I remain grateful to possess the independence that comes from living in America, but I am even more grateful for the knowledge that as a child of God; my life is not my own.....and I am truly dependent on Him alone!

"He gives power to the weak, and to those who have no might He increases strength." Isaiah 40:29

850!

2011-08-22T12:27:00.000-04:00

That is the number of pictures we took while we were away on Gavin's Make-A-Wish trip!

I'm a little overwhelmed by so many pictures.....that's why it's taking me so long to update everyone on our vacation.

But, here's a sneak peak of our AWESOME, HUMBLING, AMAZING, FUN, INSPIRING, WONDERFUL and BLESSED trip!

Here we are at the airport, just after landing in Florida:

Gavin really seemed to enjoy himself on our trip! Here are some pictures of him enjoying a few of his favorite things on the trip:

I was very worried about how he'd react to flying since Gavin is easily overstimulated by uncertain noises and situations.....but as you can see from this picture, one of Gavin's favorite parts of our trip was the airplane ride! He LOVED it!

Another highlight was each evening when we returned to our villa, after our fun-filled days at the parks. Gavin loved to lay on our bed and play with Mickey Mouse! As soon as we laid him on the bed, he would go crazy! He would smile, laugh, squeal, "talk" and have so much fun!

Another thing he really enjoyed was the safari ride that we went on at Animal Kingdom. It was a bumpy ride, and Gavin thought it was the best!

It was VERY hot while we were in Florida! But, we managed to stay somewhat cool by making frequent stops into the air-conditioned shops throughout the parks. We also kept Gavin cool by using his stroller fan and spraying him down with water frequently. Also, all of us filled up on extra fluids throughout the day. But, it was SERIOUSLY HOT!!!

Gavin as a very cute and happy Mickey!

We enjoyed our time away tremendously! We had to keep pinching ourselves because we couldn't believe how blessed we were by this opportunity! We were, and are, so blessed!

"It is more blessed to give than to receive." Acts 20:35

We're leaving on a jet plane!

2011-08-01T09:29:00.000-04:00

I have been a blog slacker this summer! I guess I've just been concentrating on family and my boys.....so I guess that's a great thing to spend time on if I'm not blogging! Right?!

But, since I haven't been blogging, I also haven't been keeping a chronicle of our life, or keeping friends and family up to date with what's been going on with us. There has been lots to share, but sharing time with each other has been my focus this summer.

So.....many of you probably don't know that, Lord willing, we are about to leave to go on Gavin's Make-A-Wish trip! And, we are so excited!

Here is Gavin researching all there is to do at Disney:

I think he's a little overwhelmed about all of our options! I know that I am! I'm also a little overwhelmed about packing all of Gavin's supplies up, and also about taking him on an airplane! Yikes! Pray that he tolerates all the excitement!

We are so thankful for this opportunity and we can't wait to make some wonderful memories together!

We'll fill you in on our trip when we get home! May all of you be blessed with as wonderful of a week as we plan on having! Wish we could take all of you with us! Love and Hugs until we meet again! :)

"The grace of our Lord Jesus Christ be with you all. Amen." Revelation 22:21

Hi Friends!

2011-06-28T12:22:00.007-04:00

Just wanted to give all of you a shout out from Gavin!

My Mom says she has been very busy, so she hasn't taken the time to do any posts on the blog lately. Plus, her brain is too crowded with thoughts. So crowded, that she can't even think well enough to write them all down!..........Whatever that means?!

In fact, these are pictures that my Mom took of me way back in May! Since then I've had a haircut, but I still look cute in the pics if you ask me! :)

I just wanted to let all of you know that we are still here, and we are doing well!

Just lots going on!

Hope to "talk" again soon!

Love and Hugs from Gavin :)

"This is the day the Lord has made; we will rejoice and be glad in it!" Psalm 118:24

Been Busy!

2011-05-20T10:49:00.000-04:00

I can't believe that I haven't posted anything on here for over a month! We are all alive, and actually doing well.....just busy! Between school, school functions and programs, Lots of SPORTS, and just living life....I just haven't had the time to blog, or if I had the time, I just didn't feel like it or know how to put my jumbled thoughts into words! I've been thinking a lot about life, and also our prospect of adoption. And, it's been filling my brain to capacity, and making my mind just want to shut down! I feel overwhelmed, but in a good way. I just don't know how to accomplish everything that I want to do, and it frustruates me that time and money regulates my wanting to help a child, that so desperately needs love! It just shouldn't be this complicated!

Gavin has been unbelievably healthy lately.....and I am loving this! I am thanking God for this reprieve, because for awhile, I wondered if he'd ever be healthy again! We decided to take him out of school, and I believe this is how he is finally staying healthy. I am sad that he isn't able to attend school, because I know he benefitted greatly from going, and he enjoyed it too! But, my goals for him have always been, and always will be, to be HAPPY and HEALTHY. So, looking at things in this perspective, our goals for him are being fulfilled!

Today marks Joel's and my 16th wedding anniversary! We have been together for over 19 years, which is half our lives on this earth! It's been a wild ride, but one that has been filled with blessing! Happy Anniversary Joel.....I love you more today than I did 16 years ago, and I thank God for placing you in my life!

The other day I was feeling sad about how the world appears to look at those like Gavin. I was wondering who gets to decide what a person's worth is? Why do people seem to think that you have to be accomplishing so much, to really be worth anything? Having been given the gift of Gavin, I have also been given an open heart and mind, to those similiar to him. On FB, I asked people what their thoughts were on how much worth a person has. To me, God's opinion is far greater than the opinion of humans.....and since He doesn't make mistakes, I know that He finds great worth in those like Gavin. They may not be able to DO a whole lot, but they bring more to "the table" than most people I know. God's purpose for Gavin may seem trivial to many, but I believe His purpose is great!

Here is a comment, and a couple of verses that a friend left for me on FB:

"Having a child with special needs has really opened my eyes to look at the worth of others as God would, not as the world does. Sure, there are days when the world's view still hurts, but that's when I go back to these verses:"

"What people value is highly detestable in God's sight." Luke 16:5b

"For the Lord sees not as man sees, man looks on the outward appearance, but the Lord looks on the heart." I Samuel 16:7

SO TRUE! I was thankful to have these verses to brighten my mood!

And, here is a story that another friend messaged to me:

------------------------------------------------------------------------------

A Blue Rose

Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.

-------------------------------------------------------------------------------

I've read this story before, and it gets me crying everytime I read it!

I'm just so thankful that God chose me to have the opportunity to care for such a rare "Blue Rose." I am so blessed!

"And the desert shall rejoice and blossom as the rose; it shall blossom abundantly and rejoice, even with joy and singing." Isaiah 35:1b-2a

Got to Dance!

2011-04-19T13:40:00.009-04:00

A couple of days ago a friend posted the following video on her FB page. She warned us to grab some tissue before we watched it. I didn't follow her advice, but I wished that I had when I had tears rolling down my face! They were mostly tears of joy, but some filled with sadness as well.

Watch these Down syndrome cuties cut loose with their siblings, in an expression of dance. And, tell me you didn't get a smile on your face, with perhaps a few tears mixed in as well!

*Pause music on the right-hand sidebar of this blog to hear video!*

Told ya that you'd smile, and maybe even need a tissue! :)

I am always amazed by the emotions that come forth when people are around those who have Down syndrome. I'm not sure why it amazes me, because I have experience with the joy they bring to others! I really don't think it's possible to not become happy when you are around such fun, innocent and perfect human beings!

I was seriously crying tears of joy as I watched them dance with abandon. But, then the tears of sadness crept in. I pictured Gavin being able to dance with such energy and happiness.....and my tears turned to sobs and longing.

I long for Gavin to have such ability! I wish with all my heart that Gavin hadn't suffered a life-altering stroke, and that he could be up.....dancing.....and running! It made me think of the "What if's." What if Gavin hadn't had a severe brain injury? What if Gavin was able to talk, walk, run, play and lead a more purposeful life?

I will never know the possibilities that Gavin might have had.......and this breaks my heart!

I do believe that Gavin dances in his own way though. Sometimes he gets so excited and his body just starts a movin'! I choose to believe that this is Gavin's way of dancing in the only way that he knows how to dance. And, Guess what? This Momma thinks it's the best dancing that she has ever seen!

And, when I see him wiggling, moving, smiling and squealing his deep squeals....I know that Gavin is doing the best he is able to, to come out of his stroke-damaged brain, and that he is trying so hard to relate with us and share with those around him.....So, he REALLY is leading a purposeful life!

His purpose is to bring happiness to others, and to teach us lessons of gratitude! And, I believe that Gavin does his job very well!

On a slightly different note:

For the past 3 years I have had the desire to adopt a child who has Ds. I've thought about it, and I've prayed about it. I've even tried to talk myself out of this crazy desire! I've told myself that it's just not possible, and that we just can't take on such a huge undertaking! I've done everything that I can to put it out of my mind....but this desire just won't go away!

I keep asking myself why I desire to adopt another sweetie with Ds. I ask myself why I have this feeling that our family just isn't complete yet. I ask why I want another child, when my hands and life are so busy with the 4 that I already have! I've woke up many mornings telling myself that our family is complete and to STOP thinking about this crazy thought!

But, it won't go away!

Joel has listened to me for the past 3 years. I'm quite sure that he has listened with closed ears most of the time! :) But, lately he has been praying about this as well. He knows that it's important to me, and he is willing to seriously consider this huge undertaking.

I'm asking that you pray for us in this matter. We feel that the answer is there, but it just hasn't been shown to us yet. Please pray that we will make wise choices and that we are shown a clear answer in this tough decision!

I know that we have lots of love to give, and many opportunities to share with another child. I also know that there are many Ds blessings out there without a Mom and a Dad.....who are waiting to be loved and cared for. It breaks my heart to think that they aren't being given the chance to grow, to be loved, to be given opportunities that children need to be given, and the chance to DANCE with abandonment in a family who adores them!

"Let them praise His name with dance; let them sing praises to Him with the timbrel and harp. For the Lord takes pleasure in His people; He will beautify the humble with salvation." Psalm 149:3-4

Gavin Adores His Brothers!

2011-04-09T09:49:00.001-04:00

Gavin has been sick. But, what is new?! Gavin has had a really rough couple of months! He just can't seem to catch a break, and I think it's beginning to wear on him.....and I know that it's wearing on me! He has been catching every little thing that comes around him, and it's been hitting him hard every time! Plus, he has been generous in sharing his germs with me......so life around here hasn't been the most enjoyable lately. I can't wait until the germs of winter are gone, and we have some consistantly nice weather and fewer illnesses! I need this so badly! And, so does my sweet Gavin!

The other day I was trying to take a few pictures of Gavin. He hasn't been his happy self, due to all his sickness, so I couldn't get a smile out of him no matter how hard I tried!

Then along came big brother Jake! He always likes to "pet" Gavin on the head.

And, Gavin knows that Jake is around as soon as he feels that little "pet" on his head! He simply adores Jake! In fact, Gavin adores all of his brothers!

And, here's the proof!

All it took to get a smile from Gavin was a visit from one of his brothers! Thanks Jacob for helping me get a smile, and a great picture of our little man! :)

"Love never fails." 1 Corinthians 13:8a

One Fish, Two Fish, Long Hair, Short Hair?

2011-03-25T17:15:00.002-04:00

Remember these shoes of Gavin's?

Every time I put them on his feet, I get a little happier. It's funny how something so simple can brighten one's mood.....well this happens to me anyway. And, now I get even happier when I put them on his feet, when I also put this shirt on him as well!

Adorable, don't you think?!

One or two of our other boys wore this shirt when they were younger, but I didn't think it would fit Gavin until after he had grown out of these matching shoes. But, I tried it on him last week and it already fits him! Yay!

Can you tell this makes me happy?! :)

Last week I also decided that Gavin needed a haircut. This is always a chore, because Gavin likes his hair cut just about as much as he likes to have a bath! (NOT AT ALL!)

Here is a picture of him before the haircut:

And, here is a picture of him after the haircut:

I personally think he looks cute either way, but there are some strong opinions in our family about how some of us prefer Gavin's hair. So, I'm wondering which way do you prefer it.....Long or Short?

"Are not two sparrows sold for a copper coin? And not one of them falls to the ground apart from your Father's will. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows." Matthew 10:29-31

Carrying a Contact...a Cartoon...a Charity...and a Cause!

2011-03-21T12:51:00.001-04:00

So.....my last post was about how empty my heart has felt ever since we found out that Gavin had suffered a stroke, and that he was likely to stay infant-like for the rest of his life. This empty feeling has not changed since I wrote that post, and this burden that I have to carry each and every day will most likely never go away.

And, my questions of why Gavin had to have this stroke may also never be answered on this side of heaven.....but, I WAS sent an e-mail recently that has me thinking a little more clearly.

Joel's aunt sent us the following true story, and it was something that I really benefited from reading! So, I thought that I would share it with all of you!

Here it is:

The Ant and the Contact Lens: (A true story)

Brenda was almost halfway to the top of the tremendous granite cliff. She was standing on a ledge where she was taking a breather during this, her first rock climb. As she rested there, the safety rope snapped against her eye and knocked out her contact lens. 'Great', she thought. 'Here I am on a rock ledge, hundreds of feet from the bottom and hundreds of feet to the top of this cliff, and now my sight is blurry.'

She looked and looked, hoping that somehow it had landed on the ledge. But it just wasn't there.

She felt the panic rising in her, so she began praying. She prayed for calm, and she prayed that she may find her contact lens.

When she got to the top, a friend examined her eye and her clothing for the lens, but it was not to be found. Although she was calm now that she was at the top, she was saddened because she could not clearly see across the range of mountains. She thought of the bible verse 'The eyes of the Lord run to and fro throughout the whole earth.'

She thought, 'Lord, You can see all these mountains. You know every stone and leaf, and You know exactly where my contact lens is. Please help me.'

Later, when they had hiked down the trail to the bottom of the cliff they met another party of climbers just starting up the face of the cliff. One of them shouted out, 'Hey, you guys! Anybody lose a contact lens?'

Well, that would be startling enough, but you know why the climber saw it? An ant was moving slowly across a twig on the face of the rock, carrying it!

The story doesn't end there. Brenda's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption, 'Lord, I don't know why You want me to carry this thing. I can't eat it, and it's awfully heavy. But if this is what You want me to do, I'll carry it for You.'

I think it would do all of us some good to say, 'God, I don't know why You want me to carry this load. I can see no good in it and it's awfully heavy. But, if You want me to carry it, I will.'

Reading this story has helped me to remember that God has a purpose for all of us.....for me.....and even, or maybe even ESPECIALLY, for Gavin! I know this in my empty heart, but sometimes I forget to keep this in the forefront of my mind.

Every single day is truly difficult for me as I care for Gavin. But, I have to remember to rely on God's strength, and to trust in His plan! Because, even though my "load may be heavy", He has a reason for having me carry this blessed load!

-------------------------------------------------------------------------------------

Have you ever heard about a place/organization called Give Kids the World? Well, they have a resort in Florida that allows children who have life-threatening illnesses to go on a vacation of a lifetime! This is where our family will likely stay when we are able to take Gavin on his Make-A-Wish trip.

Today, if you visit your area Perkins restaurant, they are serving free pancakes to raise money for Give Kids the World. If you go in to eat at a Perkins restaurant today, you and your entire family will be given a free short stack of pancakes. They just ask that you consider donating to this great charity! So, on behalf of Gavin and other children like him, please consider eating at a Perkins restaurant today!

-------------------------------------------------------------------------------------

And finally, did you know that today is World Down Syndrome Day? Well, it is! In fact, every year on March 21, it is! They chose this particular day to try to educate the world about those who have Down syndrome, because it represents the number of Chromosomes a person with Down syndrome has. Normally, we have 46 Chromosomes in our DNA, with a pair of Chromosomes on each Chromosome.....but, most people with DS have an extra Chromosome on their 21st Chromosome, making them have 3, instead of 2. So, today's date (3/21) is used to represent the fact that there are 3 Chromosomes on their 21st Chromosome! Pretty cool huh?!

So many people seem to be afraid of those who have Down syndrome, and many seem to think that they aren't able to do what many people are capable of doing. This is FAR from the truth!.....(With the exception of a few like Gavin, who happens to have severe brain damage secondary to the stroke that he suffered.) Those with DS are quite capable! They are the same as everyone else, and they can learn to do most everything the typical person does, it just may take them a little bit longer to achieve their goals. They have feelings, emotions, love, and abilities.....like all of us do! And, those of us who are blessed to have someone who has DS in our lives know this truth!

In fact, some of us who have a special child, who happens to have Down syndrome, tend to think that we are more blessed than all of you who don't have a child like ours! Seriously! I personally know that I think that I'm really blessed to have Gavin in my life.....and you may find this to be a shocker, but I even want to adopt another child who has Ds! That's how blessed I feel to have a child with Down syndrome! I just wish that my child who has Ds didn't also have to have a stroke. :(

So, in spirit of this day, get to know someone who has Down syndrome.....if you put some effort into getting to know the REAL them, you will see what a gift they are to this world!

Here is Gavin wearing his "Nothing to see here, Just an extra Chromosome" shirt.

Don't you think that I'm very blessed to have this special guy in my life?

I mean.....just look at his smile!

This boy, who just happens to have an extra Chromosome.....and perhaps the best smile EVER, is seriously the light of my life!

"I can do all things through Christ who strengthens me." Philippians 4:13

My Home & Hands are Full, And Yet My Heart feels Empty

2011-03-18T14:53:00.004-04:00

I'm surrounded by many. I have plenty of bodies to love, and to be loved by.

My home is filled with stuff....LOTS of it!

The basement is full of toys and full of equipment.....equipment such as; handicap seating, a stander, and a walker.

My cupboards and refrigerator are full of food.....but they are also full of plenty of medications, feeding supplies, wound care supplies, respiratory supplies and gastrointestinal tube supplies.

My garage is adequately filled with 2 vehicles for our use.....actually make that 3 means of transportation, when you add in Gavin's wheelchair.

My thoughts are full of God's glory and grace, and the knowledge that I'm loved by so many. But, my thoughts are also filled with so many worries and responsibilities.

My hands and life are TRULY FULL!

So, why does my heart feel so empty sometimes?

About 4 years ago, Gavin suffered a brain injury (stroke), that killed off many of the cells throughout his entire brain.

Gavin doesn't know this. In fact, Gavin has very few cares in this world.

But, I know it.

On that day that Gavin's brain was emptied of most of it's capabilities, my heart was also emptied. And, I struggle daily with the responsibility that I have each day because of this.

My heart hurts watching my 4 1/2 year old having to lay on the floor, unable to sit up on his own......unable to really play on his own.....unable to crawl.....unable to talk.....or to walk.

My hands and my mind are so very full.....full of heartache, that cannot be erased by this world. And, on more days than not, my eyes are filled with tears, as I care for my sweet boy.

Each day it's a struggle to get up in the morning.....knowing what my day holds for me and Gavin.

I just wish that he could learn to sit-up on his own! This one accomplishment would make our lives so much more bearable! Am I really asking for too much?!

None of you can possibly understand this life and the burdens it holds, unless you are living it along with me.

I know that here is SO MUCH for me to be thankful for! I am very blessed!

But, when your home and hands are as full as mine are.....unfortunately, your heart and your dreams also tend to feel so very empty.

And, all I can do to get through my days is to pray that God will give me the necessary strength.

This day can't come fast enough for me:

"And behold, I am coming quickly, and My reward is with Me, to give to every one according to his work." Revelation 22:12

"Surely I am coming quickly." Amen. Even so, come, Lord Jesus! The grace of our Lord Jesus Christ be with you all. Amen." Revelation 22:20

Some Wishes Do Come True!

2011-03-10T11:03:00.003-05:00

Do you ever think about what you would wish for if you were given one wish to make, and it would come true? I can think of lots of things that I would wish for.....but most of the things that I would wish for, would probably never come true. For example, one wish that I would love to come true is that Gavin could be healthy, able to walk and talk, and have a long and productive life. I would LOVE for this wish to come true! (Especially lately, since I've really been struggling with the life that has been given to Gavin and our family. Some days it's harder to accept this life than other days, and lately our situation has been a heavy burden to carry!) But, since this wish can't come true.....I am happy that there is an organization out there that grants wishes to families like ours!

The Make-A-Wish foundation of Michigan has granted a wish to Gavin, and to our family! Recently, two volunteers came over to our house to give Gavin this wishing box and a wishing wand, so that he could make his wish!

Since Gavin is unable to make a wish of his own, due to the fact that he can't speak, our family had to make a wish for him. We struggled with this decision. What would Gavin want?

The more I thought about it, and after talking with many people and the volunteers, we decided that Gavin wouldn't really wish for anything! Gavin is happy as long as he is with his family, and as long as he is feeling well! And, since there is no wish capable of making Gavin to always feel well, or a wish that could cure Gavin of of his heart disease, seizure disorder, lung disease, stroke, or low immunities.....the one wish that he would probably make is to have fun with his family!

Joel and I would have chosen for a ramp to be built for Gavin's wheelchair, or for a vehicle that would be more accessible for Gavin as he gets bigger.....but these types of wishes aren't available through M-A-W.....so we had to think of something fun instead! We actually felt guilty even making a wish, since Gavin won't get much out of the experience we are planning to have, but the volunteer reminded me that the wish was for the whole family. And, that M-A-W grants wishes to children who have a life-threatening illness....and this affects the entire family, so they want the whole family to gain happiness, knowing that raising a child like Gavin holds many hardships for all involved.

So, after much consideration..........

..........we chose to make a wish to go to Disney World!

And, we think that Gavin is happy with our decision!

Gavin loves to be with his family and he loves music.....so, what better place is there, than Disney?! I think that he will enjoy this time, and I'm quite confident that the rest of our family will as well! I've heard that they make everything easy for families that have special needs children.....and since going anywhere with a child like Gavin can be difficult, we are looking forward to a trip that we don't have to worry about all the little inconveniences that come from traveling with all of Gavin's gear!

"What do you mean all of my gear?! Why don't you tell them about how difficult it is to travel with my brothers?! They are the ones that cause all the chaos?!"

Gavin has a point here! :)

Whatever the case, we are all THRILLED with this opportunity, and we can't wait to find out when we are able to go!

Here is a picture of Gavin with his wish granters:

They were so nice and very helpful!

The uncertainty of living a life with a special needs child, especially one who has a life-threatening illness, can be a long road to travel. But, it is such a blessing that there are good people out there who understand the trials, and who want to help make this journey a more pleasant one! Thank you Make-A-Wish!!! We are so blessed to have your organization available to help brighten our lives!

"Make a joyful shout to the Lord, all you lands! Serve the Lord with gladness; come before His presence with singing. Know that the Lord, He is God; it is He who has made us, and not we ourselves, We are His people and the sheep of His pasture." Psalm 100:1-3

Help Spread the Word!

2011-03-02T19:50:00.006-05:00

Today is a day that an organization has set aside to bring about awareness to the r-word. (retard or retarded) A group of people decided that they had heard enough of this condescending word, and got together to get the word out! Four and a half years ago, I probably wouldn't have even noticed that this day was going on. But, 4 1/2 years ago I was given a reason to notice.....That reason is Gavin.

I have never thought this word was appropriate, but now it sounds so very offensive to my ears! I see this word on Facebook. I hear it on T.V. And, I've even had people use it around me since Gavin has been born.

You may be thinking that this is just a word. But, when you love someone who has mental retardation, this word cuts straight to the heart!

Gavin can't help that he was born with this condition. And, Gavin can't change the fact that he had a massive stroke, which has left him with significant brain damage.

And, think about this:

Any of you could have a sibling or friend with this condition. If fact, any of you could become mentally retarded on your way home tomorrow, due to a car accident! How would this make you feel? Would you want people to say this word around you?!

If love could cure Gavin of this condition, he would have the smartest and fastest working brain around! He is loved without measure! And, just so you know....he has 3 older brothers who would protect him at all costs! So, watch out! :) They may fight and argue with each other, but Gavin is off limits! Some days I worry about the sensitivity that my older boys have for others, but then I see how they interact with Gavin, and my mind and heart are put to rest. Jacob has set others straight concerning the r-word, and this truly makes me proud!

Here is a video of a sister who loves her brother very much! She is helping to stand up for him and others, like Gavin. And, I know that my boys would do the same for Gavin! Won't you stand up and join the fight for Gavin, and others like him as well?

(Pause music on sidebar of this blog to hear video)

Also, if you ask me, I usually consider people who use the r-word to be quite unintelligent. It makes you sound uneducated, and I'm sure that no one wants to be thought of this way.

Plus, in case you are wondering.....Gavin's Momma might just turn into a great big Momma bear if she hears you use this word around her as well!

Consider yourself warned! :)

"Let the words of my mouth and the meditation of my heart be acceptable in Your sight, O Lord, my strength and my Redeemer." Psalm 19:14

Good Riddance February!

2011-03-01T10:06:00.008-05:00

I am so happy to welcome March in! I'm really hoping that it's a better month to our family, than February has been! February flew by.....but, the saying that "Time flies when you are having fun" has nothing to do with it, because if you ask me, February has not been fun at all!

I realize that I have a bad attitude concerning February, but for our family, it has been a very trying month! I can probably count on one hand, the amount of days that everyone has been healthy in this household. And, the sicknesses we encountered were bad ones....especially for Gavin!

Last week I thought that we were over the hump, and that we'd get a breather for awhile, but Thursday night Gavin started coughing again....and he was coughing up blood!.....Lots of it! I was very worried! In fact, I almost fainted in the middle of the night, because I was so worried about him! I didn't know if we should bring him into the ER, or wait it out until morning to see his doctor. Joel said to wait it out, and I'm thankful we did, because I know they would have admitted him, and as it turns out, Gavin was diagnosed with Bronchitis.....which I learned, can cause you to cough up blood!

He was given a shot of Rocephin and put on more antibiotics. This has helped him a lot, but now we are dealing with the side effects of antibiotics.....diarrhea.....Lots of it!

You should have seen me yesterday. Gavin had a couple of huge blow outs....Nolan and Caleb are now calling Gavin, "The Volcano". Nice, huh?! Gavin needed 2 baths yesterday....and Gavin HATES baths, so it was a really fun day!

Our boys had off from school yesterday, and even though Gavin was still sick, we took them to see the Narnia movie. Guess when Gavin decided to do one of his volcanic eruptions?! Yep! While we were out!

Thankfully, I had brought a change of clothes and lots of wipes, in which I had to use EVERY LAST ONE OF! I was in the bathroom saying out loud that, "LIFE STINKS!".....and at that moment in time, it really did stink! I can laugh about it now, but seriously, it was BAD! Keep in mind that Gavin is too big for a changing table in public restrooms, he doesn't sit up or stand up, and poop was EVERWHERE....except his face and hair anyway, and that's questionable. I was sweating, and Gavin was screaming by the time everything was said and done!

I did think to take a picture of the mess, just to prove to everyone how bad it was, and to show how much I deserved a medal or something.....because who's going to believe how bad it was, I was the only one who had to clean up the mess! Our boys and Joel were thankful to be males yesterday, because this meant that they couldn't go into the ladies bathroom to help me.....although I seriously could have used some help! Just be thankful that I didn't have my camera with me, because I totally would have posted the picture on the blog today! :)

Anyway, February has not been a very good month....at all!

I have been thinking about how absent I've been in life lately. I've been somewhat absent in blogging, and what I've posted has been mostly negative. I've been absent at church. I've been absent at functions. I've been absent in our other boys' lives. It has been rough! I feel like I'm in a foreign world when I get out, because I have been secluded so much lately....and I hate this feeling!

I've been consumed with getting myself healthy, and getting everyone else healthy as well. I've been very busy....and yet, nothing has gotten done! I've had lots of time to think though.....and here are some of the things that I have thought about:

I am not usually a complainer. I hate to complain. But lately, I seem to be doing a lot of complaining! And, this makes me feel very badly inside. Normally, I might have things to complain about, but I rarely complain....I just see no point in complaining. It is what it is....we can't always change the way things are, so why sit and complain about it to everyone?! But, like I said, this month I've been complaining! Normally, I might vent here on the blog, or occasionally vent to my mother, and of course, Joel gets his fair share of hearing me whine about things....but for the most part, I see no point in whining about every little thing!

And yet, I hear so many people complaining and whining about their lives! And, after this month of chaos and sickness.....I'm really tired of hearing it!!!

I have always tried to be a great listener. I have been there for numerous people in my life. I've listened to their troubles and have always been there for them. And, I've been happy to do this for others. Everyone needs someone that they can turn to....and I'm happy to be trusted to do this for people. But, guess what?! Sometimes I get tired of it! Since having Gavin, the calls have decreased.....I think because they know that I'm more busy. In fact, I feel like I've lost some people in my life, because I wasn't available to be there for them as much as I used to be. This hurts....but it's probably a good thing, because I really don't need the extra responsibility!

But, this doesn't mean that I don't hear my fair share of compaining from others. And, all of a sudden, probably because this month has been so trying on me, I just don't have the patience for petty issues any longer!

Let me sum it up this way:

-If you wake up in the morning, and you are not constantly NEEDED by someone....you are quite blessed!

-If you have a 4 1/2 year old child who can sit up on his own....you are very blessed!

-If your child gets sick and you don't have to worry about whether or not they will need to be on oxygen, or need to go to the hospital, or have to watch them have seizure after seizure....you are blessed!

-If you can run to the grocery store and just have your 4 year old climb into the car and walk beside you in the store, or sit up in the grocery cart....you are blessed!

-If you are having to go through the stress of potty training your child and it's not going well....just be thankful that your child will one day be potty trained.....because you are blessed!

-If you are having to force your child to eat certain things, because they are a picky eater.....just feel blessed that your child is able to eat by mouth!

-If your back and neck aren't always hurting you because you have to carry around your 30 pound child EVERYWHERE.....you are blessed!

-If your child isn't stiff as a board, due to high tone, and you can easily sit them on your lap, without having to force them into a sitting position and keeping them in a sitting position....you are blessed!

-If your child doesn't have 12 doctors.....you are bessed!

-If your child doesn't take numerous medictions each day....you are blessed!

-If the doctors, nurses and pharmacists don't know your voice over the phone....you are blessed!

-If your child enjoys bathtime and can sit up in the bath, without needing a monsterous bathchair, that takes up a ton of space in your house, and if your child doesn't scream and fight you the whole time you are cleaning them up....you are blessed!

-If you can watch your child play and enjoy life.....you are blessed!

-If your child can talk and walk....you are blessed!

-If your child was born healthy.....you are blessed!

-If your child doesn't gag, retch and spit up lots during the day, and you aren't worried about aspiration into the lungs causing pneumonia.....you are blessed!

-If your child didn't have a massive stroke at 6 months of age, and he has little chance of doing many of the things mentioned above.....YOU ARE BLESSED!

So, if you ever complain to me about your petty issues.....For many of you, I just want you to be aware that I will probably win the "who had the worst day award!" I'm here for you, but seriously.....there are worse things in life to complain about! (***This is not intended for anyone in particular, I just get so tired of hearing people, in general, complain about life so much!***)

WHEW! I feel much better now!

I do have to follow this with the message that I know that I AM VERY BLESSED as well! I have so much to be thankful for and I do not take these things for granted, because I know that life is a lot more fragile than a lot of people will ever know!

Also, I know that others have it WAY WORSE than I do! There are Mommas out there wishing that they could care for their child right now....but their child is no longer on this side of heaven. Plus, my family has a place to live, food to eat, family and friends who love us, and support us......and the list goes on and on!

I guess I'm just trying to help remind everyone how blessed you truly are! Don't take the "little" things for granted! There are always other people who are suffering more than you are! And, complaining all the time will get you nowhere! Life truly is GOOD! Sometimes it's all in how you make it out to be! Your mind is a powerful thing.....use it wisely, and with a thankful attitude. Be thankful if you are able to walk, talk and be of service to others! Be thankful if you aren't wondering where your next meal is coming from! Because, in our own ways, we are all very blessed!

And, be thankful if you are given the gift of caring for someone like Gavin.....because even though it is a TON of extra work and responsibilty, there are also many lessons to be learned and much love to be gained! Gavin has opened my eyes to so much, and I am very blessed that God chose me to care for him! And, I know that even though there are days that are extra tough, God will give me the strength to rise to the occasion.....somehow.....some way!

Now I'm off to one of Gavin's many doctors! Hopefully we get some good news!

"Blessed is he who considers the poor; the Lord will deliver him in time of trouble." Psalm 41:1

AND THE WINNER IS..........

2011-02-21T16:48:00.004-05:00

Gavin thought he should draw the name, since it's his blog!

"Who's it going to be? I'm so excited!"

Aren't Gavin's little hands precious?!

"I got one! What's it say Momma?!"

Davilyn!

Congratulations Davilyn! E-mail us at javanderwall@yahoo.com, to give us your address and to tell us which charity you want us to donate to!

Thanks to all of you for commenting, and for reading our blog over the years! We appreciate your love, support and prayers!

*Photo Credit goes to Caleb, Gavin's 7 year old brother.....he's not too bad huh?!*

"The fruit of the righteous is a tree of life, and he who wins souls is wise." Proverbs 11:30

A Crazy Week calls for Crazy Clothes!

2011-02-18T11:41:00.003-05:00

Last week was a crazy week at the VW house! Our home was filled with lots of coughing, Oxygen tanks, the contant buzzing noises of the nebulizer and oximeter machines, lots of crying(From poor,sick Gavin.....and some from his Momma as well!), lots of calls to and from the doctors, and medications galore!

But, just because our week was full of illness and chaos, doesn't mean we didn't have some fun times thrown in as well! Last week was Homecoming week at our boys' school. Along with all the fun that this week holds for the students, they also do some crazy dress-up days! Here are some pictures of our 3 oldest boys, as they left for school each day!

Monday was wear a hat to school day:

Tuesday was color day: (Each grade was assigned to wear a different color)

Wednesday was Dress like a Historical Figure Day: (This was only for the highschool grades, so only Jacob was dressed crazy for the day. He chose to be Johnny Cash.)

Thursday was dress up like a character from a board game: (This was only highschool students as well, and Jacob's Freshman class was assigned the game Candyland. Jacob dressed up as Mr. Mint.)

I think that Hunter wanted a bite of that "big candycane!" :)

Friday was Zion apparel day: (These were the shirts that the school had made up for Homecoming week.)

I loved these shirts because of what they said on the back. "There's no place like home." I LOVE the movie, The Wizard of Oz! Plus, the shirts also reminded me how thankful I was to be at home with Gavin....and not in the hospital, considering how sick he was!

Our boys love this week of school! The school has a lot going on during this week, and EVEN Jacob loves to go to school during this week! :) The school has extra activities going on for the students. Things like: quiz games, pie a senior day, decorate your hallway, plus there is the Homecoming game on Friday night. Sounds like fun, doesn't it?

Even though last week caused me to have even more to do.....having to help the boys find things to wear, and helping them get dressed each morning, it was actually a great distraction from the fact that Gavin and I were feeling so rotten! The only bad part about it, was having to make time and find the energy to wrestle my boys each morning before they left for school, so that I could get a picture of all of them! I heard lots of, "AHH Mom! Come on, not another picture! Do we HAVE to?!)..........My answer was always, of course you HAVE to! I want to remember these days when I'm old and gray....., plus I have a blog ya know! :)

You don't get to see any pics of me and Gavin though.....we were in our PJ's and sweats all week long.....and we definitely weren't looking picture worthy!

This week has found our boys dressing in their normal,boring clothes.....but it has also found us living our normal,"boring" lives! It feels SO GOOD to have Gavin feeling well again.....and me too! I LOVE "Boring"!

***Don't forget to leave a comment in the last post as well, if you want to be added to our drawing for a prize! We plan on drawing the winner on Saturday!***

"The Lord reigns, He is clothed with majesty; the Lord is clothed, He has girded Himself with strength. Surely the world is established, so that it cannot be moved."

We are having a party.....and you are all invited!!!

2011-02-16T09:52:00.007-05:00

Why are we having a party?

Because it's a new day, and EVERY day that the sun comes up is a day to celebrate!

Not enough reason for you?

OK, how about because I am feeling so much better, besides still feeling exhausted.....but who am I kidding, I feel tired pretty much every day! So, the fact that I am feeling tons better...that's a reason to celebrate right?!

Still not enough reason?

How about the fact that Gavin is OFF oxygen and smiling again?!

Yes, he is! His sats are great(for him)! And, he is sleeping well and is happy! He's still coughing lots, but we can handle "just" a cold, after what he's been through the last 2 weeks! He is feeling so much better and we feel like celebrating!

Oh..........and this is Gavin's and my 500th post of blogging!!!!!

This is the REAL reason for our party!

This blog was started on January 15, 2007. My sister started it for me on the day of Gavin's 1st open-heart surgery. She started it so that our family and friends could keep up with Gavin's progress, and so that they could send us messages of support while we were away at the hospital with him.

I didn't think that I would keep this blog going after Gavin was back home and doing well. But, life had a different plan for Gavin and our family.....and well.....although we believe Gavin is doing great these days(in Gavin terms), his life and health never really got to that "doing well phase" that we had expected it to get to. So, I kept on blogging about Gavin's health and trials and about our family's daily lives.....and along the way we met some great people who were going through similiar situations.

And, I can't even begin to tell you what a blessing blogging has been to me! The prayers that have been lifted up for our family have been so appreciated! The help that our family has received has been so needed, and we have been so humbled by the generosity that has been shown to us! Also, the friends that I now refer to as family, that we have met along this blogging journey have kept me afloat on those trying days...and have filled my heart when I felt like I was dying inside...and who have supported me like so many just aren't able to do, because they just don't or can't "get it" like some of us can!

I am so thankful for so many things in my life....and the friends that have supported me and my family, because of this wonderful world of blogging, is right up there with some of my biggest thanks in life!

Now you may be able to understand why we are having a PARTY!

I just had to celebrate this wonderful thing!

500 posts of: hard times, good times, whining, rejoicing, complaining, sharing, venting, praying for each other, laughing, giving thanks, learning, meeting great people, falling in love with such inspirational children, crying, joking, lifting up prayers, falling down and getting back up again, supporting, getting support, sharing the love of God, and LIVING!

WOW! I am in tears over here!

Thank you to all of you who have read, prayed, rejoiced, shared, and helped me along this road! I couldn't have done it without all of you! I truly thank God for you, and I look forward to sharing life with all of you in the days and years to come!

So, how are we planning to celebrate? Well, it's kind of hard to have a party when we are all over this planet.....but I guess we can all just smile and thank God for bringing us to one another, even if it's only through a computer screen!

And.....

I have a gift for someone who comments on this post.

*If you don't feel comfortable commenting publicly on this blog and want to comment by e-mail, that's OK too! (javanderwall@yahoo.com), or on facebook, or even give us a call!* We just want to know who's out there and want to say thanks! :)

I want to give back just a tiny bit of what's been given to me and my family.

So, all you lurkers, who read but never comment, this is a great day to say Hi, and join in on the fun! I promise, we don't bite! :) And, we love to meet new people and know who is out there praying for Gavin!

One commenter is going to win a prize. It's nothing big, but I personally would like to receive this gift.

We are going to write down all of the names of people who comment on this post, onto pieces of paper, and we are going to draw a name from a bowl....and the winner will get:

A $25 gift card to Target! (I mean, who doesn't like to shop at Target?!)

AND...

We will also donate $25 to a charity of your choice!

(A charity that we approve of anyway.)

So, THANK YOU for 4 years of love, prayers, support and kindness! And, here's to 4 more years of getting to know each other, and to sharing our lives with one another!

Now.....get to commenting! And, Happy blogging! :)

"This is the day the Lord has made; we will rejoice and be glad in it." Psalm 118:24

Happy Heart Day!

2011-02-14T12:20:00.001-05:00

Valentine's Day means a lot more to me than just candy hearts, valentines, chocolate, the love you have for someone, and taking time to show your love to others.

On this day each year, ever since Gavin came into my life, I think about our actual heart.....the wonderful organ that God created so AMAZINGLY!

On the day that Gavin was born, and we found out that he had a life-threatening heart defect, my heart had never hurt as badly as it did that day. I was so worried for my tiny, sweet newborn. My first words to our physician and cardiologist were, "What is his life expectancy?" I remember one of the doctors taking a deep breath in, and then holding it for awhile.....and that was one of the longest 2-3 seconds of my life!

Thankfully Gavin was born at a time where there is great success in treating many heart defects! And, thankfully, I have had the pleasure of having Gavin in my life for almost 4 1/2 years! Some days I forget how blessed we are, and some days I forget to thank God for this precious gift.....but on Valentine's day, it's at the forefront of my mind.

So today, as you fill out valentines, or indulge in a heart shaped chocolate.....remember that babies are being born today, who have a long road ahead of them. Remember that there are many families helping to fight for their child's life right now. And, remember how blessed you are to have a healthy, beating heart!

No matter how you think of hearts on this day:

.....remember to say a prayer for all those who have heart defects.....and remember to thank God for your heart! What a beautiful and magnificent thing!

Also, remember that you hold someone's heart in your hands.....and someone out there, also holds your heart in their's.

Here are the hearts that I hold in mine:

I just pray that I am given enough strength and wisdom to hold these hearts gently.....and to give these hearts enough care and love.....and to be able to form their hearts in a godly way.....until I have to set their hearts free again someday.

Because I know how much my heart is filled because of them!.....And, because of God!

------------------------------------------------------------------------------------

Here are a few heart facts and excerpts that I read this morning:

(They were taken from a freelance writer named Beverley Golden.)

-This organ, to which we ascribe all things relating to the most powerful of human emotions, itself has no feeling. The human heart has no feeling!

-If asked to put their hand on their heart, most people would place it on the left side of their chest, but in actuality, it sits closer to the center. The left lung is slightly smaller than the right one, to accommodate the heart.

-The heart weighs in at less than one pound, with the average woman's heart weighing only eight ounces and the man's only 10. And yes, it's true that women's hearts beat faster than men's.

-The heart is almost entirely muscle, the myocardium, and is strong enough to lift approximately 3,000 pounds, close to the weight of a compact car.

-Your heart beats about 35 million times a year ... 100,000 beats per day, 70 beats per minute, with enough strength to shoot blood a distance of 30 feet! Even at rest, your heart muscle works twice as hard as your leg muscles when sprinting. By the time we turn 70, the heart will have beat 2.5 billion times.

-The heart is the first organ to show at 19 days and scientists believe that by eight weeks, when the embryo is only an inch long, the heart is fully developed. The heart starts beating in the unborn fetus before the brain is even formed.

-The origin of the traditional heart shape remains somewhat controversial, as the human heart only vaguely resembles the stylized images we see. If you clench your fists and put them side by side, that's roughly the size and shape of the adult human heart.

HAPPY HEART DAY!!! With Love and Hugs!!

"As in water face reflects face, so a man's heart reveals the man." Proverbs 27:19

Updates and Longings

2011-02-13T18:32:00.001-05:00

Gavin is doing much better! He is only on oxygen at night now. He is having fewer seizures. He is still coughing a lot, and looks quite pale. But, I know that he is headed in a very good direction! I'm not worrying about him anymore, and I feel like I can breathe again! PTL!

I, on the other hand, am still sick. I thought that I was improving on Friday, but when I woke up on Saturday, I felt worse than ever! So, since I was mostly done with getting Gavin through his crisis, I decided it was time to go to the doctor for myself.

The verdict: Strep Throat

So, I'm also on antibiotics now, and they have helped me to feel better already! I am so relieved that I know that I'll feel well again soon!

But, of course, it can't just end this quickly....because Nolan is sick AGAIN! He was sick a couple of days last week and then felt better, but I think he overdid it yesterday playing outside, because today he has a fever, cough and is throwing up! Seriously, will this ever end for our family?! It's been passed between all of us, except Joel, once already.....and now it's coming around again!

Today I said, "Spring and Summer CANNOT come fast enough!" I can't wait until all these germs are mostly gone, and we are able to stay healthy for awhile!

But, until then, you'd be smart to run if you see one of us VW family members come around you! We are obviously walking Petri dishes!

Since I was longing for nicer weather today, I decided to look at some old pictures of fun in the sun! Here are a few of them:

Doesn't looking at them make you long for sun, warmth, fun and a lot less germs?! AHHH.....I can't wait!

"But You, O Lord, are a God full of compassion, and gracious, longsuffering and abundant in mercy and truth." Psalm 86:15

Finding Joy in the Trial

2011-02-11T20:54:00.006-05:00

If you read yesterday's post, you know that I had reached my breaking point yesterday, and that I was sinking fast!

Being sick myself, caring for a VERY sick boy, and not getting sleep is a recipe for disaster.....well.....it is for me anyway! Without sleep, I can't function properly. I NEED my sleep! And, for the last week I have received very little of this precious comodity. So, yesterday morning I broke.....hence the pleading post.

But, getting it all out really helped!

I am horrible at asking for help when I need it! It's not that I don't have people around who are willing to give it.....I just hate to ask! I like to do it all on my own (not that I ever get everything done that I need to do), but what I do get done, I prefer to do it all myself.....even if it means that I break down in the process!

Yesterday I learned that I can't do it all, and that it's OK to ask for help!

(We'll see how long this revelation sticks with me?!)

And, even though I didn't really "Ask" for help.....except from my Mom (Thanks Mom!!!).....I received lots of help, offers to help, and emotional support and prayers!

Which brings me to today.

It's like a night and day difference.

My attitude is better! I'm still tired, but I'm not dragging anymore. I physically feel much better, although I still feel pretty yuck! And, I am reminded just how blessed I am!

And, all it took was to break down, vent on this blog and FB, and to call my Mommy! :)

Our fridge is now full thanks to my Mom, and 2 dear friends! THANK YOU!!! And, I know who I can call if I'm ever about to reach my breaking point!

One friend said something like this today, "You wonder sometimes why it is that God seems so far away when we are struggling so badly." And, it definitely does feel like this sometimes! I was calling out to God for healing.....for sleep....for help! But, the answers and relief just didn't seem to come.

But, I think the answers were always there! God was just helping me, and waiting for me, to see that these answers were right before me! The answers of the Family and Friends, that He has placed in my life!

Plus, when I get to that point of well-being, I'm certain my head is too full of craziness to be able to "listen" to God, or to be able to remember to look toward Him anyway. After all, I am my own worst enemy sometimes!

I mean, How were these people to know that I needed help, if I wasn't willing to ask for it?!

So, today I am able to see past my present trial.....and see the joy and goodness that was always here!

Well.....it also helps that I got a little bit of sleep lastnight too!

And, that Gavin and I are improving some!

Gavin is still on oxygen, but his breathing is a lot less labored. He only had a couple of seizures, so far today. (The neuro increased his Keppra) He no longer has a fever and he slept way better lastnight! (He was started on an antibiotic...so maybe it's helping?) And, he is needing less pain medication than he has the last few days!

Look how pretty his new meds are! Pink and Purple! I don't see much of these colors around this house! :) I must be feeling lighter today, if I am finding joy even in medication....right?!

AND.....we saw some of these numers today:

And, EVEN this number!

The top number is his blood oxygenation....and 100 is the best it can get! The lower number is his heart rate.

In days past, these numbers have been all over the place for Gavin! He was in the mid 80's for oxygen and 150's for heart rate.....which just means that he wasn't doing well, and his body was fighting hard!

Gavin normally only runs at about 95-97% oxygenation, because of his lung disease and heart defect. The 99% and 100% numbers that we got today, were with him on oxygen, but in days before he was only around 92%, with O2 on, so he is doing great today, compared with the rest of this week!

This change probably has helped my outlook on life as well!

Oh, and this sweet smile has helped a lot too! I've missed seeing Gavin's happy face! Today I got quite a few smiles!

So, I feel like we are over the hump, and the rest of the ride will be more bearable!

But, if it's not all smooth sailing.....I know that God has given me people to call, if I need help, and many of you who are willing to pray!

"Weeping may endure for a night, but joy comes in the morning." Psalm 30:5

Hanging by a thread!

2011-02-10T10:18:00.000-05:00

No cute pictures.....no cute things to say.....no funny stories.....no words filled with hope and thankfullness.....

You will find NONE of these things in this post!

I am barely hanging on and I don't know how much longer I can do this!

Gavin is still sick, and his seizures are OUT OF CONTROL! He fights them so badly and gets himself into such a state of turmoil! His seizures are weird....I don't even know if they are a true seizure, but they make him madder than mad!

He is up at least half the night...crying! I am up with him....feeing miserable and sick as well....and wanting to cry right along with him!

His sats are stable, but since he is crying so much, they plummet and his heart rate goes sky high! He fights everything.....especially nebulizer treatments, which he needs so badly right now! I have very little strength, since I am sick too....and what strength I have left is sucked out of me as I try to control him while I am doing his nebs....seriously.....this boy is STRONG! And, when he is not feeling well, he fights nebs to the bitter end!

I am seriously losing it! I need sleep! I need to feel well again! I need Gavin to feel well again!

Please pray! Pray that Gavin gets better! Pray that he can be comfortable! Pray that his seizures will stop! Pray that he will sleep! Pray that I can sleep! (Because even when Gavin does, I can't.....because I feel so horrible and I'm so worried about him!) Pray that he can stop crying so much! Pray that I can heal and feel better too! Just pray! Thank you!

My prayer for the day: Lord....please give me strength!

"God is our refuge and strength, a very present help in trouble." Psalm 46:1

A friend that I haven't missed at all!

2011-02-09T09:18:00.003-05:00

It has been one of those weeks! One that can't end fast enough! Although it could have been a whole lot worse than it's been, it certainly hasn't been very much fun! We did get to spend some time with an old friend.....but I haven't missed this friend at all, and I hope to never see them again! Well, Gavin is the one that spent most of the time with this friend.....and he wasn't happy about it either!

Yep that's right, our friend, Mr. Oxygen:

It all started with Jacob getting sick last Thursday, and then Gavin decided to follow suite. The only problem is Gavin's little lungs couldn't take it! He hasn't needed to be on O2 for almost 2 years, but this illness finally did him in!

I'm just thankful that we still had O2 tanks, an oximeter, and tubing at the house.....otherwise we definitely would have been in the hospital with Gavin. He was breathing so fast and his sats were in the low 80's! Once the O2 was put on, he still struggled, but we just did lots of nebulizer treatments on him, and lots of CPT. It was touch and go for a while, but he finally came around and is off the O2 now!

Goodbye old friend! And, please just STAY AWAY!

Gavin is still coughing a ton, and I'm worried that he is going to deflate a lung! He is also having many seizures with this illness as well.....but he IS doing much better than he was, so hopefully he'll be back to his smiley, and mostly healthy self very soon! Thanks for all the prayers that were sent out for Gavin.....Please keep on praying!

Of course, it didn't stop there, because Caleb got sick too...although, he healed VERY fast! And, now I'm sick as well! And, being a Momma is absolutely NO FUN when you feel miserable! At least Gavin is sleeping fairly well the last 2 nights, but I certainly haven't! Between my head feeling like it was going to burst, and Nolan having one of his "migraine???" headaches lastnight, I got very little sleep!

Have any of you suffered from headaches or migraines? Nolan gets a really bad headache just about every month or sometimes every two months, and then his stomach feels nauseous, and then he throws up, and then he is able to sleep really good and when he wakes up, the headache and nausea are gone! It's the same all the time and I have no idea why it happens! The good thing is that it only lasts about an hour or two and then he goes through this cycle....and then it's over...just as fast as it came on!

Anyway, even though I felt so miserable during the night and I had to be up with Nolan, and up with Gavin a little, and up with myself feeling miserable....I seriously found this all to be quite humorous! Thinking about this week and all the craziness and sickness just became very comical to me.....I guess I should be thankful that I was laughing and not crying.....right?!

Or, maybe I'm just going a little bit insane.....or maybe I just need some serious sleep?!

That's probably it..........Please just wake me up when all of this is over, or after the flu and cold season is done! :)

"The spirit of a man will sustain him in sickness, but who can bear a broken spirit?" Proverbs 18:14

Snow Day!!!

2011-02-02T20:37:00.002-05:00

Gavin isn't a big fan of winter, snow and cold weather! I think it may have to do with the fact that he has to wear a hat.

"Why did you put this thing on me again?! I am SO taking this thing off!"

"Great! That didn't go as planned! Now I can't even see!"

I don't blame him! I am not a winter person myself, and hats and coats are something I avoid at all costs! Unfortunately, me and Gavin are going to have to keep wearing our hats and coats for awhile.....cause we got snow dumped on us lastnight!

I know a lot of the country got snow as well. Here's what it looks like around here:

Jake this morning, running back from the neighbor's house, after asking if he needed help digging his car out of all the snow:

Joel running the snowblower:

Jake helping him:

Caleb heading to shovel:

Caleb watching Nolan do most of the work.....as usual:

And, him deciding to help after I reminded him to do so:

What it looked like when I opened our front door:

Pictures of all the snow we got:

Snow cascading off our roof:

Some of the digging Joel and the boys did:

Joel usually leaves for work by 7:00 or 7:30, but with all the snow in our driveway and on the roads, he couldn't leave until after 10:00.....there was a lot of digging out to do before he could get the car down our driveway! He said that when he opened the garage door, there was a drift of snow up against it that measured past his waist!

The meteorologists are saying this is like the blizzard of 1978.....which yielded over 16 inches in a 24 hour period. So, there was a lot of digging out do do around here! I'm so thankful to have a hard-working hubby and 3 strong boys to dig us out! Thanks to them, me and Gavin were able to stay inside where it was warm!

But, after all their hard work, they were rewarded with lots of playtime in the snow.....which they loved!

And then, yummy hot chocolate afterwards, to warm up! YUM!

So, what did Gavin do?!

He snuggled with his blanket and with his Momma!

Maybe all this snow isn't so bad after all! :) Getting to spend a day with my boys at home, and not having to get out in it makes for quite an enjoyable day!

Hope all of you are enjoying the beautiful sight of this winter wonderland, and are all staying nice and warm! :)

"Wash me, and I shall be whiter than snow." Psalm 51:7b

Love/Hate

2011-02-01T10:29:00.001-05:00

I have a love/hate relationship with machines. They can be so convenient and they are often times very necessary, but they can cause so much stress in my life!

Lately, our van has been making a loud noise. I know that it needs to be taken in to be looked at, but there never seems to be enough time, plus I always seem to need my van, so going without it while it's being fixed is a hard thing to do.

Then, there is Gavin's nebulizer machine. We have to use it on him once a day. And, there are some days that I really dread turning on this machine! It is so loud and it seems to take forever to administer the medication through it! Sometimes it just doesn't want to work well, and then we have to figure out what's wrong with it. So, it can be such a pain! BUT, it has also been a life-saver for Gavin at times, and it has enabled us to stay home, instead of having to have Gavin admitted into the hospital when he isn't breathing well...so I also LOVE this machine, despite the hassels it may cause!

Yesterday this following machine gave me a ton of trouble, and wasted at least an hour of my day! This is the machine that allows us to phone in Gavin's pacemaker settings to the hospital that is 2 1/2 hours away.

This machine is totally AWESOME! I am always amazed that I can just hook it up to our phone line, turn it on, then place a paddle over Gavin's pacemaker and it can send all kinds of info to the hospital! Totally blows my mind! And, the pacemaker itself is quite amazing as well! Gavin wouldn't be alive today without it! BUT...there are days when the call-in machine doesn't work, like yesterday. And, I was in such a great mood yesterday, and then this machine totally ruined my day!

I tried to get it to work 6-7 times and it just wouldn't send the info out! It would upload the pacemaker info, but it wouldn't dial out to the hospital. I was SO FRUSTRUATED! I called the hospital. I called the Medtronic company. Then after complaining to Joel about it, he reminded me that we had recently switched to a Digital service for our phone and cable lines. So, I called the cable company and they said that they have many people who have digital service, who also need to phone in pacemaker readings, and it works fine for them. (Which is NOT true, according to Medtronic.) So, I called the hospital again and they said that this machine doesn't work with a digital system, and none of their machines will. So, I called Medtronic and they said that we can pay $10 a month for a cellular service that connects to the machine and then it would work. They said that another cable company (AT&T) has a system that works with the machine, but that the company we have (Comcast) doesn't. So, I considered switching to AT&T, but then I remembered that they don't have service in our area yet! UGH!

So, for now I guess we pay $10 a month. The hospital said that we could use someone else's phone line to call in the monthly readings, but then we would have to pack Gavin and the machine up to go out and do it.....and I already have a hard enough time remembering to call in the reading and fitting it into our shedule! Plus, if there were an emergency, like if Gavin was short of breath or his heart rate was too low or sporadic, then we wouldn't be able to do an emergency call in reading, so $10 per month is worth it to me!

Then there is Gavin's feeding pump machine. This one is another life-saver! Gavin can't eat by mouth, so he NEEDS this machine! I love it, because it feeds my son, keeps him hydrated and alive.....BUT, anyone who has one of these machines will tell you what a pain it can be! The lines get occluded so often, and then the machine beeps! The bag tips over and then the line empties, and then the machine beeps! The pump senses that the bag is empty...even though it IS NOT empty, and then the machine beeps! The machine also seems to have a mind of it's own somedays, because absolutely NOTHING can be wrong with it and it BEEPS...BEEPS...BEEPS! About drives me crazy! (Of course, it started beeping while typing this post!) So, I love this machine, but I also hate it!

The following picture is of Gavin's G-tube.....another life-saver! This is where we hook up the feeding tube to Gavin's stomach. It is an awesome invention.....But, of course it's like a machine, in that it can cause troubles as well. It sometimes gets twisted and comes off, which makes a nice mess for me and Gavin! And, it can get pulled out if it's pulled on with any force.....Gavin likes to get a hold of it many times in a day, but thankfully it's only gotten pulled out a few times.

FYI: If you want to know where Gavin's pacemaker is, look at this picture and you will see a diagonal scar on the left side of his abdomen. The pacemaker is inserted just under that scar. A pacemaker usually is placed into a person's chest, but with a baby, they put it in the abdomen. You can also see many other scars that Gavin has accumulated over the years. He has been such a trooper!

Here is a picture that I found when I was looking for the pictures above. I took these about 2 1/2 years ago. Look at Gavin around this time. He was so chunky back then! But, WAY CUTE, if you ask me!

And finally, I love my computer, but I think I hate it just as much! I love that I have been able to meet some wonderful people, and to form a support system that I wouldn't have otherwise. I love the ability to keep in touch with others and look up info quickly, but it is SO SLOW and takes so much patience from me.....Patience that I can't afford to lose, since it seems I'm constantly spending mine on 4 boys each day! :)

Machines.....Can't live with them, Can't live without them!.....Truly a love/hate relationship!

"To everything there is a season, A time for every purpose under heaven:
A time to be born, And a time to die; A time to plant, And a time to pluck what is planted; A time to kill, And a time to heal; A time to break down, And a time to build up; A time to weep, And a time to laugh; A time to mourn, And a time to dance;
A time to cast away stones, And a time to gather stones; A time to embrace, And a time to refrain from embracing; A time to gain, And a time to lose; A time to keep,
And a time to throw away; A time to tear, And a time to sew; A time to keep silence,
And a time to speak; A time to LOVE, And a time to HATE; A time of war, And a time of peace." Ecclesiastes 3:1-8

What's Wrong?

2011-01-26T11:57:00.006-05:00

Our oldest is home from school sick today. He has a sore throat, a head and neck ache, and he feels tired and achey. How do I know that Jacob feels this way?.....Because he told me so.

Last Thursday, I sent Gavin off to school on the bus. That morning he was a happy little guy and he seemed happy to get on the bus too. I was looking forward to getting some laundry done, and then I was planning to head to the store for some groceries. About an hour after he left our house, I received a phone call from his teacher. She said, "Gavin isn't his happy self. He cried all the way to school and he's been crying ever since he got off the bus. I thought you would want to know that something is going on. I checked his tube to make sure it wasn't pulling. We took his temperature. I looked him over for anything that might be hurting him or bugging him, but we can't find anything that could be wrong." I heard him sobbing over the phone, and this broke my heart!

I asked if she had tried taking off his shoes, because sometimes his toes get curled up in them, so she took off his shoes, and he stopped crying! She said, "Maybe that was what was wrong with him. I'll call you later if he starts crying again." About 10 minutes later, she called me back to tell me that he had fallen asleep and that all was well. So, I went about doing my chores and getting ready to go to the store. Ten minutes later, she called back to say, "He's awake and he's NOT happy!" She said that she was very willing to keep him there, but wanted to know if I wanted him to ride the bus home, if he continued to cry. I told her that I would be there in 20 minutes, and I left to bring Gavin back home.

When I got there, he was no longer crying, but he looked really sad and as if he'd been through a rough day! I went over to him and he sighed, gave me a little smile and started "talking" to me. I was so happy to see that he was alright, but I was wondering.....Why had he been so upset?!

It's so frustruating when you can't ask your 4 year old what is going on with him! He obviously had a reason for crying, but what was it?

Did he just need his Momma?

Because after I picked him up from school, he was his normal happy self! And, he has remained quite happy since that day!

Gavin isn't one to cry. He is a calm, and easy-going boy....until you put something in his mouth or get him wet anyway! Then watch out.....he will let you know he's not happy!

He does cry when he is scared or startled by something, but he is used to school and really likes being there. And, he does cry when something neurologically is going on with him. But, usually we know that something is off, because he has a seizure or he jerks, or he is really out of it....and after this he cries from whatever was going on. Maybe this was the problem, but they didn't see any of this going on. So, Gavin had us guessing, "What's wrong with him?"

When I was driving to school to pick him up, I thought for sure that something was really wrong. I worried the whole way to school. I wondered if he was hurting, or was he getting sick.....I hate not being able to ask him what is wrong! There is a lot of guess work when you have a child like Gavin.....But, thankfully I rarely have to guess what is wrong with him, because he's usually a happy guy!

I wish that Gavin could talk to me, like his big brothers are able to talk to me. But, since he can't, and since he isn't likely to ever talk, I guess we will never know why he had such a bad day at school that day.....and this makes me do a lot of pondering, and it also makes me feel a little bit sad.

Maybe Gavin just wanted to spend some time with his Momma.....?

If that was the case, I was happy to oblige him and I will always be happy to spend the afternoon with him! Besides.....I wasn't really looking forward to doing the laundry and getting groceries anyway! :)

"Let your eyes look straight ahead, and your eyelids look right before you. Ponder the path of your feet, and let all your ways be established." Proverbs 4:25-26

My 'Son'shine

2011-01-20T11:39:00.002-05:00

Whether Gavin is just looking out the snow covered windows,

Staring off into his own little world,

Just hangin' out,

Looking shy and sweet,

"Talking" to us,

"Singing" to us,

Laughing,

Or, giving us one of his award winning smiles:

Whatever Gavin is doing, he helps to bring the sun out for me every single day that I get to spend with him! He is my 'son'shine!

And, if that weren't enough to put a smile on my face, check out the cute Converse sneakers that I got for only $5, for him to wear!

Colorful Dr. Suess shoes, Gavin, and God's love & promises.....What more could this Momma possibly need to put a smile on her face?! I think today is going to be a great day!

"To Him who made great lights, for His mercy endures forever-
The sun to rule by day, For His mercy endures forever;
The moon and stars to rule by night, For His mercy endures forever." Psalm 136:7-9

Looking back.....

2011-01-17T11:59:00.009-05:00

WARNING: This is a long one! But, if you want a recap of some of what Gavin has gone through in his life.....Read on! It has a happy ending! :)

This past Saturday, January 15, marked two anniversaries for our family. January 15 will always be a day that our family will never forget. Looking back on this day is bittersweet.

The first anniversary is of Joel's Dad's death. This past Saturday marked 11 years since he has been gone from us. When I look back to the day he died, I remember that I had just given birth to Nolan, 2 weeks before. It was a bittersweet time. I was so in love with my newborn and was flying high with having a new baby to love, but it was an emotional time for our family because Joel's Dad was far away in a hospital waiting for a transplant. Joel flew out to see him twice after Nolan was born...he was there to see him just hours before he died. It's sad not having Dan here with us, to this day....but when we think about him, there is always a smile brought to our faces! He was quite the guy!

The second anniversary is of Gavin's 1st, of several, heart surgeries. Saturday marked 4 years since that stressful day. Gavin was supposed to have had this surgery 2 times before this day, but he had an infection both times, so they had to be canceled. It was kind of scary knowing that Gavin was going to have surgery on the anniversary of Dan's death. We were told how difficult this surgery was going to be and that Gavin's condition, going into surgery, was very poor. The doctors had no choice but to do surgery on him, but the conditions were not good for operating on Gavin. It was unspoken between us, but I'm sure that many of us were worried that we might have 2 deaths to remember on this day.

Here is a picture of Gavin waiting to have surgery. He had been in the hospital for several weeks, on a ventilator, because his lungs were such a mess due to pneumonia and high pulmonary pressures. He started out at a hospital near our home, and then was flown by helicopter to the hospital that was going to do his cardiac surgery.

(I miss that scar-free chest, that was without the huge lump of a sternum, that he has now. :( Because Gavin's sternum bone had to be opened up so many times in a short period of time, his sternum is raised up A LOT, and it even shows through when he is wearing a shirt! But, that scar and bone are certainly a reminder to us, of what our warrior boy has had to go through in his short life!)

The surgeon that was going to do Gavin's surgery is one of the best! But, even with all of his experience and successes, we were told that Gavin's case would be a very difficult one for him to do.....and that they were even planning for the worst. Can you imagine how hard it was to let them take him back to surgery?! I was so scared!

This is why we were fearful that Gavin might share the same day of death with his Grandpa. Gavin was named after Dan, since his middle name is Daniel.....but I am so thankful that they didn't have to share something else in common as well!

This is Gavin after surgery:

He was totally sedated and hooked up to TONS of lines, tubing, pumps and meds those days after the surgery, but he WAS ALIVE! Several doctors told us that they "went in expecting the worst, but they came out with the best result that they had hoped for!" We were on cloud nine those first few days after the surgery!

Here is a picture of all our boys, on one of the many visits they had to make to see their little brother in the hospital:

Of course, Gavin decided to keep them on their toes, because the next few months proved to be totally opposite from the best case scenerio! Here is a short recap:

Gavin needed 2 more open-heart surgeries, because one of the valves that they repaired had broken open again, and then his heart went into second degree heart block, so he needed to have a pacemaker put in. Also, Gavin's lungs were such a mess that he could not be taken off the ventilator, despite many trials and meds to help him to get off from it. He also coded a couple of times during this time, and we were certain that there was no way he would ever get home again, and if he did, it would be with a trach and a ventilator. Long story short...by the grace of God, Gavin surprised us all by successfully getting off the ventilator, despite how horrible his lungs were, and despite having the severe leak that he had (and still has today) in his Mitral valve! It was truly a miracle!

Here is a picture of Gavin, with him off the ventilator and doing physical therapy in the hospital.

Even though Gavin was able to be extubated, he still had a long way to go! Because we were a couple of hours from our home and I was missing my other boys terribly, (since I could only see them on some weekends when they came to visit during that 3 1/2 month stay at this hospital), the doctors decided that Gavin was stable enough to fly back to the hospital that was closer to our home. This was such a happy day for us!

Didn't Gavin look happy about this?!

Little did we know that this crazy roller-coaster ride was far from over! Once he was admitted back to the other hospital, they did all their tests on him again and they told us that he and his lungs "were a mess!" The other hospital we had just left were so excited by the progress that Gavin had made and they were so hopeful for his recovery! And, so were we!

It was quite a blow to us, to hear how badly the doctors at this hospital thought he was doing! They decided to change up a ton of his meds and put him on HIGH doses of dieuretics, plus antibiotics. This is where our new roller-coaster began!

We had planned on getting home within a week or so, but it didn't turn out this way! The next month did not go well at all!

This is when Gavin came down with C-Diff, from all the antibiotics he had been on, and this is when he was constantly having diarrhea from the C-diff. (Like 30 diapers a day!), and despite all this loss of hydration due to the C-Diff, they continued to give him all those dieuretics! His body was being so depleted of much needed fluids and they did nothing to stop this! In fact, they didn't even have him on an I.V. at this time, because they said his lungs were so full of fluid and he couldn't handle additional fluid intake. I told them that I understood that his lungs were full of fluid, but the rest of his body SURE WASN'T! He was losing weight and he was extremely irritable and couldn't sleep at all. It was a nightmare that I think of once and awhile, and I wish that I could go back to again....so that I could change all of what happened!

I was pleading with them to help my son! I knew he was not doing well and I begged them to put him on I.V. fluids. They told me that I "was just a Mom" and that they knew what they were doing. Finally, after a couple of days of this, one doctor listened to me and put him on I.V. fluids....at 10cc an hour!....like that was going to make any difference! But, it was too late anyway.

Long story short: Gavin had a stroke, also called a hypoxic brain injury. It was due to him being so severely dehydrated, and he probably also had a very low blood sugar! It landed him back in the ICU, and on a ventilator again!

This one mistake has forever changed his, and our life! The stroke affected his entire brain!.....(Permanent damage). The CT scan showed that he should not have even been alive!

Gavin spent another month in the hospital, and the only reason they sent him home was because I told them that I could probably take better care of him at home, than what they were doing in the hospital! They were very against sending him home, but I insisted that since I had a nursing degree, Gavin would be in capable hands and that they didn't get to make choices for him any longer....because they had messed up.....Big time!

Here is a picture of Gavin the month that he came home.....after 4 1/2 months in the hospital. (We were told to expect 10-14 days! I'd say that was a very long 10-14 days!!!) To this day, this is one of my favorite pictures of Gavin! I think it's because he was finally home with all of his loving family! Oh, and he looks really cute in it too! :)

Of course, Gavin began having seizures after the stroke, and his lungs continued to be a mess! He was on so many medications and we were constantly going to one of his 12 doctors! He also ended up in the hospital more times than I can count, and I really had a difficult time trusting any doctors or nurses that cared for him there, after all that had happened!

But, look at my guy today!

He is doing so well and exceeding all of his doctor's expectations! He will always suffer from the stroke that he had, and his heart still needs some repair, but he is ALIVE! And, he is the light of our family! God has taken such great care of Gavin and, such great care of our family! I don't know why all of this happened to Gavin, but I do know that we are all better people because of it! Gavin, and all of our trials, have truly been a blessing! Life and God are truly Good!

"Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us." Romans 5:1-5

Blessed 39th Birthday!

2011-01-14T10:23:00.003-05:00

Wednesday was my birthday.....I turned 39. I don't know how this is possible! I seriously don't feel 39 years old. And, when I think about how young my parents seem, I wonder how it's possible for them to have a 39 year old?! Mentally, I feel about 25. So, I guess that's a good thing. But, the calendar says that I'm 39?! This just can't be right!

I had a wonderful and busy birthday! Our family had a lot to do that day.....piano lessons, cadets, taking an easy and fast meal over to Joel's uncle's house, who's wife recently passed away.....plus all the other daily duties that our busy family always seems to have! So, it was a fast-paced day, but a day that filled my heart up tremendously!

I received many loved-filled phone calls from friends and family. I was taken to lunch by my loving Mother, who surprised me with a table full of friendly faces, once I arrived to the restaurant! I was able to celebrate my day with my Mom, a favorite aunt, a favorite cousin, and her precious daughters, a wonderful friend and my sister (who drove in to see me on my day!) and the best surprise of all.....

.....this little man! (My nephew Tate!)

Yep, he was the highlight of my day! I mean, just look at that face! He is such a delight and so snuggable!

Oh, and a wonderful friend of ours stopped by our house to say Hi, and to give me a card and gift!

I seriously felt loved that day!

Of course, I was also able to spend it with Joel and my boys! I really don't think that my day could have been better....well, time to breathe and really savor the people in my life would have been nice, but really.....it was almost the perfect day!

Here are a few more pictures of all the love that surrounded me!

I'm pretty sure that it doesn't get much better than this! :)

Although.....when I woke up the morning of my 39th birthday, I did think about my life thus far. I wondered, "Have I accomplished much? Have I done enough in my 39 years?" Unfortunately, I felt the answer to my question was, "No". I know that I've had a full life so far, and I know that I've done a lot and accomplished a lot, but it just doesn't feel like enough!

So, I decided to sign up to be on the bone marrow registry list, so I filled out the online registration that day. I will receieve a kit in the mail soon. Having done just this one simple thing has helped me to feel like I'm doing a little something for this world and others.

In my 39 years I've been a daughter, a sister, a friend, a wife, a mother. I've graduted from several schools, and I've earned a nurse's degree. (Sometimes I think that I should be using this degree...but then I remember that I actually am, Thanks to Gavin!) I've been a Sunday school teacher., I've tried to share my faith and love with others., And I've made tons of mistakes that I've been able to grow from. I guess I've had a fairly full 39 years.....I just feel like there is so much more that I should be doing.

I guess I will have to do some soul searching and figure out what else I am supposed to do with the next 39 years.

One thing that I do know, right now I have the best job on this earth....that of being a Mom! Being a Mom is the most rewarding, yet unrewarding job that there is! It's the hardest job, yet the easiest job that there is! It's one of the most responsibilty-laden jobs that one could possibly have....especially when one of your children is as dependent on you, as Gavin is on me! It's a low paying job, but it's also the highest paid job! (Receiving hugs, kisses, smiles and laughs is the best pay out there!) And, feeling a sense of pride that comes from being a Mother, can't be compared to any other feeling of proudness out there!

When I look at my life in these terms.....I realize that I've done quite a bit in my 39 years! And, I pray that my next 39 years are filled with the same blessings as the first 39 years! Life is, and has been, VERY GOOD to me!

Thank you to all of you who have filled my years with so much! Love and Hugs to all of you! :)

"I know that You can do everything, and that no purpose of Yours can be withheld from You." Job 42:2

Morbid thoughts.....

2011-01-11T10:58:00.006-05:00

.....I have them. Lots of them.

I am usually a very positive person. I always try to look for the silver lining in everthing that happens. I am usually upbeat and try to think of things as being "half full." Most times I succeed in this. I truly believe that Life is Good! But, for some reason, I can be joyfully going about my day and then, WHAM!....a morbid thought pops into my head! Am I the only one who has this problem?

I was thinking about this and I wondered if it is because I have Gavin, a child with so many health issues. But, I know that this happened to me before I had him, so it's not his fault. In fact, having Gavin has probably made me less worried about things for some reason. I think it's because so much has happened with him and we've almost lost him several times, and yet, he's still here! I've seen and had to go through lots with him, but it's made me more aware of God's grace. There have been many times that I should have been feeling so stressed, like when Gavin coded and his hospital room turned into a scene from some medical show. But, during that time, I can honesly say that I have never felt so calm in my life....and I know that it was because God was comforting me at that time.

But still, these morbid thoughts pop into my head....at a moment's notice, and for no reason at all! I have no control over this and it stinks! Maybe it's because I've seen lots in my life and I no longer have that "teenage mentality" of thinking that nothing bad will happen. Or, maybe it's because so many of our blogging friends have lost a child way too early in life. Whatever the case, I wish these thoughts would just go away! I am a thinker.....constantly thinking.....and analyzing.....and wondering.....maybe this is why?

The other day we were going through some of Caleb's schoolwork and artwork.....he has a ton of them! He hates to throw them out, but truthfully, I am just as bad as he is about it! I look at something and it brings a memory back to me and I can't bring myself to get rid of it! This is why my "Craft Room" is a total mess, it's because it's actually a storage/junk room! Anyway, when I was going through some of his things, I had the thought, "What if something happened to Caleb and he was no longer here? I would want to have this to remember him by." Caleb is totally healthy and I have no reason to worry about his well-being, but I still had that thought pop into my head. I mean, this picture that I was considering throwing away was a scrap piece of paper that had a drawing of one of his stuffed animals on it....nothing huge, but I felt the need to save it! Am I the only one who does this?

Then there is Gavin. I have lots of reason to worry about him. He has a heart defect, lung disease, seizures, a leaking valve, and when he gets sick it is always harder on him, then it is for the typical person. Yet, he has been doing SO WELL! He isn't even supposed to be alive today, and his heart isn't supposed to be tolerating the demands of his body....but he is doing so well! Praise God!

But, there is always that thought, "When is it all going to come crashing down?!" Because it has to.....that is what we are told by doctors anyway. So, WHEN?! When will he end up in the hospital so very sick like he used to be? When will he need his next heart surgery? When will he no longer be in our lives?

I try SO HARD to be thankful for how well he is doing and I try my HARDEST to just be in the moment with him. But, these morbid thoughts sneak in there every once in awhile.

The following photo shoot, of Gavin, is a result of such thoughts. I was just about to send him to school one day, and suddenly one of my morbid thoughts came into my head. So, before I sent him to school, I decided to take lots of pictures of him. I was trying to get "the perfect shot", but he wasn't really cooperating with me.

The funny thing is, I was working so hard to get one of his award-winning smiles, and I was sad that it wasn't working out, but when I looked at the pictures later, I realized that I had just taken real, honest to goodness, pictures of Gavin!

This is what I ended up with:

Like this one, It's a picture of him looking so sweet and calm, which is a typical Gavin look.

And, this one is one with him looking at the camera...(something I have to work hard at getting him to do since he is legally blind and he's usually off in his own little world)...and it also shows his cute crossed eyes, which is a typical look that we see from Gavin.

This one shows him staring off into space..another of Gavin's typical looks, and it also shows how long he is getting!

This one shows him "talking/yelling"....I love when Gavin does this!

The next one shows him covering his face with his hand, which is where his hands are often found!

This one shows him with his chin sticking out....a look he gives us when he isn't happy about something!

The following one shows him doing another typical Gavin thing....putting his thumb in his mouth and his finger in his eye! Crazy boy!

Here is one of him looking away.....another typical Gavin occurence! This is why I am SO THANKFUL for digital cameras! I delete as many as I keep!

Here he is finally attempting a smile for his Momma!

And, finally a smile that made his Momma's day!

So, in the end, a very satisfying photo shoot of Gavin!

I wish that I didn't have these morbid thoughts and I wish that I didn't have reason to think these thoughts concerning Gavin....but maybe it's a good thing in the end! I got some really cute pictures of Gavin in the process! And, it makes me turn to God with prayer.....something I do often, but probably not often enough! How many of us would turn to Him if life was always perfect? Just a thought.....

"Now He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee. So we are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith, not by sight. We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord." 2 Corinthians 5:5-8

Life is so Fragile

2011-01-05T09:23:00.000-05:00

I don't know about you, but lately I see so much pain and suffering around me. It seems like the devil is working overtime, and it's really bringing me down. It just seems like so many are dealing with such difficult trials, illnesses, death, and sadness. I don't like seeing so many hurting, and I wish that I could take away their pain.

One thing that I CAN do is pray. And, I've been doing lots of this lately.

And, yesterday Gavin decided to join me in prayer!

My little man is such a light to me in this world! I don't know what I'd do without his sweet smile and the innocence that he brings to my life each day!

Know that I pray for so many of you daily, and I hope that you are all given a light that gets you through your days as well!

Life is fragile.....remember to handle it with Prayer!

"Let my prayer come before You; incline Your ear to my cry." Psalm 88:2

Boys, Boys, Everywhere!

2010-12-30T12:43:00.004-05:00

As I type this post, I am listening to our middle boys. Here are a few of the actual things that have come out of their mouths in the last 5 minutes:

1. "Caleb keeps killing me!"
2. "Caleb, close your lightsaber!"
3. "Aaaaughhhh!"
4. Insert shooting noises here...
5. "Get him!"
6. "AHH HAA!"
7. "Die you! This is what you get for killing him!"
8. Insert flying noises here...
9. "Don't kill me!"
10. "Stop it! I'm sick of this! I quit!"
11. "Don't kill him! Stop!"
12. "Let's get em' boys!"

All boys, all the time!

The noises are annoying. The conversations are loud, and are all about fighting.

This house is definitely ALL Blue!

Check out the shirt that I got for Gavin:

It says, "Boys Only! (Except Mom)"

Yep! That about sums up our house...even the dog is a male! I am so in the minority around here!

I TOTALLY LOVE my boys! They definitely make life exciting and full of adventure! Plus, my boys are seriously the BEST! And, I am really going to miss them when their Christmas vacation is over!

BUT.....just so you know.....this Momma dreams in, and of, PINK!

And, This is one dream that I pray comes true someday!

"The streets of the city shall be full of boys and girls playing in it's streets." Zechariah 8:5

Merry Christmas!

2010-12-27T15:41:00.001-05:00

It didn't really feel like Christmas to me this year. Maybe it's because our family, all except me, came down with a horrible stomach flu the week of Christmas, or maybe because Joel's mom was in the hospital, or maybe because I'm just getting old and things aren't as they used to be.....whatever the reason, it didn't feel like a normal Christmas to me. But.....we definitely enjoyed ourselves, and we certainly had and have a lot to be thankful for!

On Christmas eve we had several family members and friends over for a gathering at our house. This was great, because we were able to get the 5 cousins all together!

This was my sister Amy's son's first Christmas, and Tate was probably the highlight of our party!

Caleb was very excited to have one of his favorite people at our house! I don't think that he can get enough of Mr. Tate! But, who can blame him? I can't get my fill either! Aren't they cute together?!

I bought Gavin and Tate matching PJ's, and they have their names on their little bottoms! Can you say adorable?!

On Christmas day we went to church, and then visited with Joel's Mom at the hospital. She is looking and feeling much better, and will hopefully be able to come home sometime this week. Keep those prayers coming please!

Here are a few of the many pictures that I took of my handsome boys Christmas day:

Merry Christmas from our family to yours!

This picture will have to serve as your Christmas card from us, for awhile anyway.....with all the craziness of the last couple of weeks, getting cards out has been the last thing on my mind! But, they will be sent out soon....I hope! :) Thankfully I put Merry Christmas AND Happy New Year on them! :)

We hope that all of you had a blessed Christmas!

"For there is born to you this day in the city of David a Savior, who is Christ the Lord." Luke 2:11

When it rains, It pours!

2010-12-22T13:47:00.001-05:00

This is how Gavin and I have felt all week!

This was actually a picture of Gavin about 2 weeks ago, while we were at one of Jacob's basketball games. Gavin has decided he hates basketball.....or at least he hates the whistle blowing and the buzzer going off! Poor boy!

But, I decided to post this picture today, because I felt this picture pretty much sums up what the feelings have been around here lately.

Joel's mom had to have emergency abdominal surgery early Saturday morning. She had been in the hospital after a routine surgery from the week before, that went really wrong! She is still in the hospital very weak and with a whole lot of changes to get used to...and hoping to be home by Christmas, but that isn't looking promising. She is normally such an active and healthy person, so it's very difficult seeing her so weak and in pain. Please pray that she continues to heal and that there are no lasting complications and that she can return home very soon!

Then, Nolan came down with the stomach flu and passed it on to Caleb....who threw up right during the church service Sunday night! (Can you say embarrassing?!) I wasn't there...thankfully for me, because I was home with Gavin who was getting sick as well!

Joel decided to go spend the night at the hospital with his mom that night, even though Caleb and Gavin were so sick, and I got to spend an extremely fun night at home with my sick boys! (Can you sense the sarcasm?!) I spent about 4 hours going from one boy's bed to the next, cleaning up vomit and diarrhea, changing sheets, doing laundry, emptying puke buckets, and pretty much wanting to cry my eyes out! Finally I called Joel and told him that he needed to "come home now!", because I was only one person and I seriously couldn't keep up with taking care of both boys on my own any longer! Of course, once he came home it became more bearable and he slept the rest of the night while I stayed on Momma duty cleaning up more messes! (Can you sense the resentment here?!) Anyway, it was one long night and it left Gavin doing horribly!

He is still sick, but hanging in there. On Monday he was so pale and limp that I thought for sure I would have to take him into the hospital. He is normally very stiff, secondary to having high tone from the stroke he had, but on Monday he was as limp as a rag! And, it was quite scary! Thankfully he has a g-tube, and with lots of Pedialite going into it, we have been able to keep him at home! This is such a blessing!

Of course, Joel ended up getting sick as well! So far, this is where it has stopped. Jacob and I have remained healthy so far.....and I am praying that it stays that way! I have been washing my hands until they are raw, and praying that all the care that I have given to the family is all I will have to endure!

Please pray that Gavin continues to get better. He is still having diarrhea and sleeping most of the time. When he is awake, he is sad and grinds his teeth so loudly that I am about to go nuts! That noise is one of the worst noises ever! I haven't seen a smile from him in days, and this is so abnormal for my smiley boy! It's breaking my heart!

There have also been so many friends, family, and school family & church family members going through so much lately! It is really bringing me down! I have been praying like crazy and hoping that we will all see a rainbow after all of this rain!

One thing is for sure, there is always someone else who is suffering worse off than we are! I know that God's grace is sufficient though! And, I also know that all of this has made me more thankful for the reason for this season! So much of what we all focus on at this time of year is just so unimportant! For this reminder, I am thankful!

"For the earth which drinks in the rain that often comes upon it, and bears herbs useful for those by whom it is cultivated, receives blessing from God." Hebrews 6:7

Do you want a Christmas card from Gavin?

2010-12-10T09:35:00.001-05:00

We have been very busy at the VW house lately! I can pretty much sum up our last couple of weeks with 3 "B" words.

Busy.....Basketball.....and Blessed!

Busy: 4 children, laundry, doctor appointments, school, school functions, etc.

Basketball: Jacob decided to join the B-ball team at school. He has never played before, and swore he never would either!, but he decided to give it a try and he's liking it so far.......and we are enjoying watching him and the team play!

Blessed: There is too much to put after this word, but one of the things that is such a blessing to me are these 4 handsome guys!

Speaking of this picture.....if you would like to receive a couple of pictures similiar to this one, let me know if you want a Christmas card sent out to you. I have many of your addresses, but if you haven't received one from our family before and you don't think that we have your address, and you want one this year.....leave your address in the comment section here on this blog, or e-mail your address to me at: javanderwall@yahoo.com

Thanks! Have a great day! :)

"Blessed is he who comes in the name of the Lord!" Psalm 118:26

Gavin may not be able to tell me what he did at school today.....

2010-12-06T20:14:00.000-05:00

.....but something tells me that he did a little painting!

And it appears that he did this with only his left hand. :)

Something else tells me that Gavin is proud of this accomplishment...

and quite happy about his day too!

Gavin may not be able to communicate with words, but he sure does talk to our hearts!

"And they said to one another, "Did not our heart burn within us while He talked with us on the road, and while He opened the Scriptures to us?"" Luke 24:32

It's that time of year again!

2010-12-03T10:00:00.002-05:00

The brothers are happy about it!

Momma? Not so much. This means that it takes longer to drive to school.....and we are usually running late as it is! This also means that it takes longer to get ready for school.....because there are obviously more layers to put on, plus my boys can never find one glove, or they left their hat at school or somewhere else! Oh, and I can't forget how wet and dirty everything seems to get! UGH!

I don't think Gavin likes this weather either! He isn't a fan of hats and I have to bundle him up a lot to ride the bus to school each day.

"Seriously Mom, this is ridiculous....you are embarrassing me! My brothers don't have to wear a blanket to school!"

"But, it sure does look and feel cold out here!"

Of course, it's also the time of year for snuggly, fuzzy PJ's!

And, me and Gavin LOVE this!

Isn't he just huggable, snuggable and adorable?!

If only we could just hibernate together for the winter! Stay warm out there! :)

"And pray that your flight may not be in winter or on the Sabbath." Matthew 24:20

In Control...

2010-11-30T09:48:00.002-05:00

.....of the remote control!

Lastnight Joel set Gavin on the couch for a few minutes, so that he could lay a blanket down on the floor for him to lay on. When he went back to pick Gavin up, he found Gavin holding the remote control! The remote control must have fallen off from the arm of the couch into Gavin's lap. But, I think that Gavin was happy about this!

"HMMM...What should I watch?"

"This is a funny show! I think I'll watch this."

"I can't believe that I finally got control of this thing! Back off brothers, it's all mine!"

"This is the life!"

"Even there Your hand shall lead me, and Your right hand shall hold me." Psalm 139:10

Thankful....

2010-11-25T10:53:00.001-05:00

...for these handsome boys,

...and a whole LOT more!

Happy Thanksgiving to all of you!

"Enter into His gates with thanksgiving, and His courts with praise. Be thankful to Him, and bless His name. For the Lord is good; His mercy is everlasting, and His truth endures to all generations." Psalm 100:4-5

Cute?

2010-11-19T10:23:00.000-05:00

Yeah, I thought so too! :)

"He who heeds the word wisely will find good, and whoever trusts in the Lord, happy is he." Proverbs 16:20

For His Glory

2010-11-16T10:58:00.007-05:00

The last month or so has been rough! There has been a lot going on and Gavin has been abnormally sick. This has made me into one tired Momma, and little bit overwhelmed! Days at our house are seriously full, just like everyone else's home.....but when you add a Gavin to the mix....some days are just SO tiring! And, most of the tiredness comes from mental exhaustion.

I don't know what is going on with my sweet boy, and this can be so wearing on me! He gets sick, and then he is better, and then he is sick and then he is better. The problem is....the better only lasts a couple of days. I really don't think that he is sick, but he just keeps having so many secretions and this causes him to gag, retch, spit up.......over and over again! Last week was a pretty good week and he made it back to school after having been off for over 4 weeks. But, come this Monday....he's right back at it again!

You may think that this doesn't sound like a big deal, but to me it is.....I'm just so tired of it! This is how the day goes. I am woke up in the middle of the night several times, due to his gagging and coughing, and I have to run to help him. Either that, or I am woke up by the beeping of his feeding pump and I have to run to fix whatever the problem is. Gavin is a TERRIFIC sleeper and I am very thankful for this! I should be sleeping great, because he is such an angel, but between the beeping, the gagging, the coughing and all of my thinking....I am so tired!

Then, I get up in the morning feeling exhausted and grumpy and have to do all my Momma things: (breakfast, make lunches, set out clothes, constantly tell my middle boys to stop goofing off and to hurry up if they are going to school today, break up their arguments, remind them to do everything....because they have very smart brains, but they don't like to use them!.....and in between all of this, I have to run to help Gavin when he is having another gagging/coughing fit and fix the STINKIN' beeping feeding pump!, shut off the feeding pump, and then rush everyone to the van....but first remember to grab napkins to have in the van, for when Gavin gags and retches and spits up everything that the stinkin' feeding pump just put into his cute little tummy!....drive the boys to school, tell them to behave and that I'll miss them and that I love them....and give them probably the first smile that they have seen from me all morning......drive home, do Gavin's meds, change several diapers, get him dressed and have him spit up all over the clothes I just put on him, change his clothes again!......) I think you get the picture.

I realize that most Mommas have to do a lot of this every day. It's what us Moms do when we have little ones and big ones! But, here is the mentally exhausting part.....my little one is never going to get "big"! Gavin WILL get bigger, but he will probably never be able to sit up on his own, and I will always having to deal with that stinkin' feeding pump and I will always have to carry my sweet boy everywhere and I will continue to have aching biceps and neck and back....and I will have to do all of this every single day! The thought of this really tires me out!

I am seriously not complaining here, I just need to release all of this and then get on with my day. I WANT to be able to do all of this for Gavin and my boys! I LOVE my job as their Momma! LOVE IT!!! I just get so tired from doing it every single day, and especially when it hurts so much (mentally and physically), having a child that can't even sit up on his own at 4 years of age!

I REALLY hope that I get to do all of this for MANY more years to come! I dread the day that the cardiologist tells us that this is all that we can do and Gavin's heart just can't tolerate the demands of his body any longer! I want to care for Gavin forever, but I'm not going to lie.....it is a really tough job to have!

Today I woke up feeling especially overwhelmed. Joel is gone hunting and all of the weight is on me. I am so happy that he is able to be gone for awhile, because he totally deserves a break, since he works so hard outside of our house, so that I am able to stay home and do the job that I seriously love. But, without him here, it is definitely more taxing on me, since caring for Gavin can be such a physical and emotional job! I am seriously not complaining about him being gone....I kind of enjoy getting to spend time with just my boys and having them all to myself....I am selfish like that. :) But, I'm just so tired.

Speaking of my boys.....they are wild, crazy, overstimulating, argumentative, loud, full of energy, and did I mention, WILD?! BUT.....they are also so fun to be around, happy, smart, handsome, and helpful boys! They really pick up the slack when their Dad is away and I don't know what I would do without them! They seem to know that they need to behave better and help out more when Dad is away....especially Jake, and I am so blessed to have them as mine!

But, since I'm tired and have a lot to do in a day, I woke up really feeling overwhelmed today! I felt ready to throw in the towel and just give up! So did I? Thankfully I didn't have to! I read a quote on a friend's facebook page that helped lift my spirits, and then I heard a song on the radio that gave me hope! In fact, it's the song that is playing on my blog right now. (Voice of Truth, by Casting Crowns)

Although I was already home from driving the boys to school, I sat in my van a little longer to listen to the song's words, and suddenly I was in tears and feeling a sense of clarity and thankfulness. All the wordly voices that we "hear" on a daily basis started to go away and I was able to see the big picture!

The daily voices that I hear each day are, "Why do some people seem to have it so easy and I have a child who needs so much care? Why do I feel so alone in this world? Why can't Gavin just learn to sit up? Why can't just one day go easy? Why have I been called to live this life that I am having to live?"

Today, I heard the answer to these questions. The answer was always there, but it is often drowned out by all those questions of "Why?". I just needed to listen carefully and remember. Today I found the answer in a song. And, I know that tomorrow I will be given the answer some other way.....maybe through the hug from one of my boys. Maybe from the kind words of a fellow blogger, or a thoughtful friend. Maybe from my husband....who comes home again tomorrow! Maybe from my wonderful Mother, who always knows just what I need to hear. Maybe from a verse in the Bible. The answer is always given to me just when I feel like I'm falling apart! And, this always amazes me!

So, what is the answer to all of the negative voices that we hear in this world? Today I heard it in a song, and today I am thankful to know that all that I do in this life is so worth it and that there is a purpose for it all.........it is all done for His glory! And, this makes me feel so glorious! Today may be hard, but each and every day, I can choose to wake up to "the voice of truth".....which is such a wonderful gift.....The gift of God's promises to me!

And also, the gift of this precious boy.....who seems to help me listen a whole lot more clearly!

"So I have looked for You in the sanctuary, to see Your power and Your glory. Because Your loving kindness is better than life, my lips shall praise You. Thus I will bless You while I live; I will lift up my hands in Your name." Psalm 63:2-3

My Cute and Loyal Puppy!

2010-11-09T09:32:00.001-05:00

NO, not that one.....although he IS very handsome, and is probably better behaved than most of my children! :)

I'm refering to this one!

I've decided that Gavin is like a loyal and forgiving puppy.

Have you ever heard that "joke" or saying:

You can figure out who loves you more, and who is a better friend to you, by locking up your dog and your friend in a room together...and then come back a few hours later. Who do you think will be most happy to see you?.....I'm quite sure the dog would be happier and more forgiving than your friend would be!

This story pretty much sums up Gavin as well!

Gavin is very patient, doesn't ask for much of anything, he will lay around waiting for when you have some time for him, and he is ALWAYS happy to see you!

He is my sweet little puppy!

Gavin is the best!

"Therefore, as the elect of God, holy and beloved, put on tender mercies, kindness, humility, meekness, longsuffering; bearing with one another, and forgiving one another, if anyone has a complaint against another; even as Christ forgave you, so you also must do." Colassians 3:12-13

A lesson from Gavin.....

2010-11-03T10:51:00.001-04:00

This life can be tough! There can be many obstacles that seem to get in our way. Sometimes it seems like we will never catch a break....(like a break from all this sickness that Gavin keeps having! UGH!).....but we have to remember a few important rules to keep ourselves afloat!

Gavin seems to have the recipe for dealing with life's struggles. Here are some lessons that he has learned in his short life:

1) Sometimes we need the help of family, friends and God to keep us from falling down!

2) Remember to protect your faith (and face) when you are getting hit with a tough decision or trial!

3) As you protect yourself from what comes at you, remember to keep a look out for the blessings that also come along with each trial!

4) Find joy and something to celebrate in every single day!

5) Take time to close your eyes and pray throughout the day!

6) Sometimes a nap is all we really need!

7) Always remember that all fights and trials do come to an end. Fight hard and with a good attitude.....then it won't seem quite as tough as you thought it was! And, always try to keep a smile on your face!

Gavin may have been given a tough road to fight, but he sure does have some great lessons to teach!

Thanks Gavin! You are such a blessing!

"I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7

My Little Fighter and My Big Slugger!

2010-10-31T21:37:00.000-04:00

When I saw this costume, I had to buy it for Gavin! If you were to define the word fighter.....it would have Gavin's picture behind it! Gavin has, and continues to, battle lots of obstacles in his short life. But, even when the doctors have had him down for the count.....with the help of God, Gavin has always stood up to fight once again!

I simply adore my little fighter and I couldn't be more proud of him!

As for Caleb, the following pictures definitely have him in his element! If you are ever looking for Caleb, you can almost always find him doing one of the following:

1. Playing some form of Sport.
2. Dressing up in some kind of outfit or uniform.
3. Running, catching, throwing or MOVING!!!

I just wish that I could be that cute and have that much energy!

My boys can be so much fun!

"The Lord will fight for you, and you shall hold your peace." Exodus 14:14

Emotional Momma

2010-10-29T10:22:00.003-04:00

Let's see.....

Gavin has been sick for over 3 weeks. The weird thing is, it doesn't seem like he's sick because he is happy as can be, he has no fever and his O2 sats are great.....but, he is extremely stuffy and it sounds like he's snoring BIG time when he is just breathing. He's gagging, retching and spitting up a ton. And, he is coughing lots too.....probably from all the spitting up that he is doing, which means that some of it may be getting into his airway. I have had 2 Dr. appointments for him, and both have been canceled. One due to an error of mine and one due to the doctor having to cancel, because he was sick. (Nolan and Caleb thought that the latter was very funny, because he's a doctor.....I guess they think doctors don't get sick?.....and also because this would mean that the doctor would have to go see a doctor!.....insert cracking up here!.....my boys are nuts!) :)

Anyway, I have no idea what is going on with Gavin, but I do know that all of this is wearing on the Momma! I don't like to see him suffer and when he is gagging and retching....which is a normal daily occurrence, but lately it's an all day long thing!.....he definitely looks like he's suffering! Plus, he has been having some weird seizures, although the neurologist doesn't think that they are seizures, because he is totally coherent while having them. But, they sure look and feel like seizures to me! They say that it's something neurologically going on, but not seizures??? Whatever they are, I don't like them and neither does Gavin, because he usually fusses and cries when he has them....which is not typical of Gavin, unless you put him in water. Seriously, Gavin almost never cries or fusses, unless he is mad or not feeling well.

Anyone have any ideas what is going on with him?????

All of this wondering, and running to help Gavin when he is gagging, and mostly being stuck inside is making this Momma a little grumpy and a lot emotional!

Well, there is more to the emotional part, but I'll get to that later. First, here are some cute pictures of Gavin and Daddy. I love them, because it shows Gavin being silly, cute and showing off his happy personality!

Isn't he a little honey?! Well, I think so anyway!

Here he is with Daddy's hat on. Oh, and you might notice in the background, a girl that also has Down syndrome. She is the one at the table behind them. She is wearing an orange headband in her hair.

Seeing her made me so happy! I get such a swelled heart when I see someone else who has Ds, like Gavin does! She was so cute!

But.....seeing her also made me emotional.

She was so high functioning, and this is what made me feel sad and emotional.

There is such an instant bond with parents that have a child who has Down syndrome, but for parents like Joel and I, there is also a sense of abnormalcy, to be around the typical person who has Ds. It's difficult not to feel a huge let down, knowing that Gavin could have grown up to be like this girl. He could have had the opportunity to walk one day, eat at the table with his family, enjoy numerous activities......etc., if only he hadn't had that massive stroke, which was the fault of non-observing and non-listening medical professionals! You have no idea what it feels like to see your son in someone else, but to know that they will never be like that person! Gavin's brain was severely damaged by this stroke and it could have been prevented, but it wasn't, and now our life is forever in a stand still. Gavin is 4 years old, but at a 4 month level mentally and developmentally.....this is a hard pill to swallow every single day! Most days I am really good with all of this, because at least I have my sweet boy and he can smile and he brings so much happiness to our family.....but when I think of the "what could have been's", all of this really STINKS!

Right now, caring for Gavin is difficult at times, but it's only going to get harder, as he grows. Each and every day I try to come up with things to do with him and places to put him to lay down or sit.....but, when your 4 year old can't even sit up on his own, there aren't a whole lot of options! And, this makes me sad and it makes me feel guilty when I have to leave him lying on the floor by himself to do......pretty much NOTHING! He is legally blind from the stroke, plus he's mentally a 4 month old, so watching cartoons isn't an activity for him to do. He has to be bored, just sitting there or lying there, with almost nothing to do! But, I can't and don't even want to always entertain him and stimulate him.....but when I'm not, I feel sad and guilty! At school he gets lots of stimulation, but he hasn't been to school for 3 weeks, so he must be bored out of his mind....of course I don't even know what is going on in that mind of his, because he is only at a 4 month level!

Can you see how this would be emotional on a Momma?!

I really feel alone in this world. There is almost no one who knows what I am going through and what I feel on a daily basis. I don't "fit in" with Mommas who have all typical children, and I don't "fit in" with mommas who have other children with Ds, because although they are going through hurdles of their own with their child, their child still has the opportunity to advance......Gavin is likely to stay at this level forever. Gavin and I just don't fit in and this makes me feel sad.

I feel so blessed to know of one Momma and child who has an idea of what this life is like. But, I only know them through blogging and they live far away, so the support isn't really there. And, actually, I can't even say that I know exactly what their life is like, because Jax is even more fragile than Gavin is and he's gone through way more than Gavin has had to go through. But, I feel blessed to "know" them and have the long distance support of such an amazing Mom and boy! They even have 4 boys in their family, like we do! We have lots in common.....except too many miles between us. :(

I recently read a blog about a Momma who's child passed away. She said that people tell her that the saddness gets better with time. But, she said that this is so far from the truth! Each day may even get MORE difficult, since having lost her sweet girl! ( I can't even imagine the hole that would be there if one of my children died before me! I seriously don't know how I could go on each and every day! ) While I'm not even trying to correlate the two, I'm going to use this to explain something.....Gavin having lost his opportunity for a future of advancement, is somewhat similiar to suffering a death of a child. The promise of a productive future with Gavin is gone in so many ways. Gavin will never be what he could have been.....and this leaves me with a hole in my heart and mourning every single day. BUT.....I still have Gavin and my heart's hole is no where near the size of this Mother's. My hole can be filled in an instant, with one of Gavin's sweet smiles and with the Grace that God supplies me with every day!

Please pray for all the Mommas out there who are longing to be with their child today!!! The thought of this pain literally breaks my heart!

Well.....I'm actually feeling quite better after typing all of this out! Sometimes I just need to release all of these feelings, then I can get on with my day and feel happy again. Because, Gavin TRULY makes me feel happy! I just wish that his life could have turned out a bit different.

Enough of the sad.....how about some Gavin pics to put a smile on your face!

"OK Dad, enough of the hat already! It doesn't even fit me and it totally doesn't match my outfit either!"

"Thank you! That makes me much happier!"

"He who heeds the word wisely will find good, and whoever trusts in the Lord, happy is he." Proverbs 16:20

Busy living life!

2010-10-18T09:50:00.000-04:00

31 days of blogging?.....That went well, didn't it?! We have been too busy living life to keep up with a blog too! I should have known I couldn't do it! But, I'm back at it....just not every day. I don't know how people find time or enough to say to blog every single day?!

So, what have we been up to during my blogging absence? We have been busy with soccer, school, laundry, camp-outs, appointments, SOCCER, homework, visiting family, LAUNDRY, having fun, cleaning, being SICK, oh.....and more soccer and laundry! :) In other words, Living Life!

Gavin has been sick for the last 2 weeks. He appeared to be better last week and then a day later, it came back even worse. He has been so junky, mainly in his airway and he sounds like a bullhorn when he breathes. He is coughing lots and gagging and spitting up a ton! He was generous and gave it to me, but thankfully I got over it fast. I felt so tired and grumpy when I had the illness, but you would never know that Gavin was sick if he didn't sound like he does! He is still such a happy boy and so good natured! Have I mentioned how happy this boy makes me and what a lesson he is to all of us?

Here are some pictures of Gavin lastnight.....sick and all!

Yep, he's a trooper!

Since he hasn't had a fever and his O2 sats are staying good, I haven't taken him to the doctor, but he hasn't gone to school for 2 weeks. He has an appointment on Thursday, so maybe we'll have to start an antibiotic, if he isn't better by then?

We haven't stopped living life just because he's sick though.....and I'm thankful that we haven't had to. It's been a year and a half since Gavin has had to be in the hospital and this is really quite amazing! For a boy with so many health issues, he is doing remarkably well! I am so thankful for this! With a child like Gavin, you never know when life will have to stop for a while, so until then, we plan on living life to it's fullest, each and every day!..........I just wish laundry wasn't such a big part of that life! :) I'm off to do some more of it, and also to give my sweet boy another breathing treatment..........with a SMILE on my face, because we are able to be at home, and not in the hospital! :) Life really is good! And, so is God!

"A merry heart does good, like medicine, but a broken spirit dries the bones." Proverbs 17:22

BETTER Brothers - Day 7

2010-10-07T21:38:00.000-04:00

In my opinion, having Gavin in our lives helps to make us better people. Since Gavin always has a smile for us, and he is usually in a great mood, it tends to ware off onto the rest of us. Plus, since Gavin is very dependent on us, we have had to become less selfish than we would naturally tend to be. I know this is true for me anyway, and I have noticed that it has had an affect on our other boys as well.

Our older boys are quite competitive with each other, but they are never like this with Gavin. Many times during the day I hear things like, "He wasn't playing fairly! He cheated! He took this from me!", when they are playing a sport or game with each other. But, when they are "playing" a game with Gavin, they are always kind and let him "win".

It is so cute to see Caleb wrestling with Gavin!

Of course, Gavin can't take part in the wrestling match what so ever, but Caleb has a great imagination, and in his head, Gavin is the BEST wrestler ever! Nolan agrees with this and calls Gavin the "ULTIMATE baby", who can take down anyone who might try to fight him! Nolan and Caleb come up with some great stories about all that Gavin has done in his life.....of course everything they say is a big story, but in their heads it appears to be the truth! There is absolutely no competition when it comes to Gavin.....according to his big brothers, he is the best at everything!

Maybe it's because they wish that Gavin could do more or maybe they are just playing with him as if he can do more? I'm not sure what they are thinking, but it's nice to see them want to play with Gavin, even though Gavin can't really play with them. It has made our boys less selfish and more thoughtful of others.....and I think this is a great thing!

Another thing...Caleb is not very keen on reading. It's a struggle to get him to practice reading each day. He complains and tries to get out of it, and is constantly asking when he can stop. But.....I have found that if I ask him to read out loud to Gavin, he will read better and longer, than if he reads with me. Maybe it's because he knows Gavin can't read on his own or maybe he just wants to be nice to his little brother and spend time with him? Whatever the reason is, it's adorable to me that he is willing to read to Gavin, plus it helps him learn to read better in the long run!

There are many more instances where Gavin helps to make our family learn to become better people. The point that I'm trying to make is this.....we really needed Gavin in our lives! Considering he isn't capable of doing much of anything, he has certainly brought about many great blessings, just by being here!

Each day we have with Gavin can only make us better brothers and better people! The world we live in can be such a selfish place! Having Gavin helps to ensure that we always have someone else to think of besides ourselves. And for this alone, we are very thankful to God for sending us Gavin!

"And be kind to one another, tenderhearted, forgiving one another, even as God in Christ forgave you." Ephesians 4:32

SWEETER - Day 6

2010-10-06T20:02:00.004-04:00

This past weekend our family, and my Mom, took part in our yearly Fall tradition of driving to a town near us that holds a Harvest Festival every year. On the way there we stopped at an apple orchard, where they make their own apple cider. YUM!

Here is a picture of the boys getting ready to watch them make the cider:

And, here are some pictures of the cider being made:

They have a machine that grinds up all the apples, and then the apples get squirted out through a tube onto a layered platform.

After they have about 10 layers of ground up apples, they use a machine that squishes all the layers together, to squeeze out all the juice from the apples.

Then the juice drips into a metal bin, and then they fill up the gallons with the prepared apple cider from there.

Watching them make the cider this way doesn't make the cider look very appetizing to me. It almost makes me not want to drink it at all! All I kept thinking was "how clean are all those machines and tools that they are using? And, don't they have to sterilize it or something?!" But, I knew that it would taste good, so I tried to put the process out of my mind and took a drink of it anyway. I'm glad that I took that first drink, because it was delicious and very thirst quenching!

When I think about it, this is kind of how it was to be given a child with Down syndrome. When Gavin was first born and they told us that they suspected he had Ds, I was a little sick to my stomach. I was fearful that I wouldn't like the "taste" of this life. I was unsure of how to digest this news at first.

Like watching the apple cider being made and thinking about drinking it, after it was just made before my eyes.....I took a look at my son and wondered far down the road about how appetizing this life would be. I knew that I would most likely like many of the "tastes" that would come with having Gavin.....but would I love being his mother, like I loved being the mother to my other boys?

While I watched the apple cider being made, I was very interested! I couldn't take my eyes off of the guys working hard to produce that sweet juice. That's how I felt when I first laid eyes on Gavin. I couldn't take my eyes off of him and I was very curious about how life would be for our family, with him as our son/brother.

I'm certain that some people are too frightened to "take that first drink", once they hear the news that their baby has Down syndrome. Some people never attempt to "take a drink" at all. Now that I know what life is like having a child with Ds, I find it extremely sad that many people don't give these sweet children a chance!

I am so happy that Joel and I weren't frightened off by this unexpected gift! Gavin has been such a WONDERFUL addition to our family! I can't imagine life without him!

Gavin may have been prepared a little differently than we were used to, and he may have come packaged in a slighty complex package.....but who wants to drink plain old water all the time, when you can drink delicious apple cider too?! Water still tastes great, but cider is definitely such a wonderful treat!

Gavin may have come to us with many "gallons" full of health issues, but in the end, he has only made everything in our life taste a WHOLE LOT SWEETER!

We are so blessed!

"How sweet are Your words to my taste, sweeter than honey to my mouth!" Psalm 119:103

Revisiting Jon - Day 5

2010-10-05T21:36:00.000-04:00

Two years ago I blogged about a man named Jon. I had "met" him by watching a short film that his sister had made about him. I watched the film and fell in love with Jon, so I had to share him with others.

Since it's Down syndrome awareness month, I have decided that we should revisit Jon again.....just because he makes me happy!

The following are the posts that I wrote about Jon 2 years ago. If you want to read them, just click on the words "HERE".

HERE

HERE

Here are a couple of pictures of Jon:

Does he make you smile too?! :)

The film that was written by his sister was made about 9 years ago. He was 40 years old during the making of the film. That would make him about 50 years old today.....I often wonder how he is doing.

Here is a quote, written by his sister Jennifer, talking about her film and about Jon:

""The Teachings of Jon" is an insightful, soul-touching and funny documentary about my brother Jon, a 40-yr old man, severely and profoundly affected by Down syndrome. He has an IQ of 20, doesn't talk and earns less than $13.00 a year. Although Jon may never accomplish much in this world, he has an important purpose here... not necessarily to learn, but to teach."

You can get to know Jon more, by visiting his site HERE.

I think that Jon, and many like him, have a lot to teach us! If you go to their website and watch some clips from the film, you will see that Jon teaches us that we should be happy with the simpler things in life. It doesn't take much to make Jon happy and feel fulfilled.....and I think this is an important lesson for us all!

Jon, Gavin and the many wonderful people who have Ds may be different than a lot of us.....but I truly inspire to be more like them every single day!

"The entrance of Your words gives light; it gives understanding to the simple." Psalm 119:130

Such TROOPERS! - Day 4

2010-10-04T20:54:00.004-04:00

I have met so many kiddos, who were born with Down syndrome, on this beautiful road that we've been on since Gavin came into our lives. I have fallen in love with so many of them and I have learned a lot from them in the process! One thing that I have learned from them is that they are such troopers! They persevere though it all.....and usually with a smile on their face!

Not only do these sweet children come with an extra 21st Chromosome, many times they come with serious health conditions. About half of them are born with a heart defect, or some other health concern. And, unfortunately, more than their share end up having to battle an ugly disease called Cancer! Many people with Ds have lots of obstacles to overcome in their life. It's difficult not to question, "WHY?!", sometimes! One answer that always comes to me when I am wondering why these children have to face so much in their lives is this: They provide us with such an amazing lesson in all of their hardships! You will NEVER meet a person who copes with pain and heartache better than a person who has Down syndrome does!

A physical therapist that cared for Gavin in the hospital once told me this: "You know how you feel when you are coming down with an illness? You feel slowed down and achey and just not good. This is how it feels to a person with Ds everyday." People with Ds have to work so much harder just to get through their days and when you add a heart defect or Cancer to the mix....they must feel ROTTEN! But, you would probably never know how rotten they feel, because it's just not in their nature to show it! They are such an example to all of us!

Gavin has been through so much in his short life! He has had many surgeries, many hospitializations, many blood draws, many nebulizer treatments, many illnesses.....but he has been such a trooper through it all! When he has to go in for a blood draw, the person who has to draw his blood always gets a worried look on their face, and they usually call for help from a co-worker. They say to me, "I hate drawing blood from little ones! I feel so bad and they fight me so hard!" I usually say to them, "I feel badly for him too, but don't worry he won't fight you and he will barely flinch either." They don't believe me, but as they go about drawing the blood they always say, "WOW! He takes this so well!" And, he does! He takes everything well and often times with a smile on his face for you! (Of course, there is always the exception....Gavin HATES water and he will let you know this!)

The point that I'm trying to make here is that those with Down syndrome are AMAZING! They can take a lot and they actually make it easier on us, as their parents, to watch them have to suffer.....because they do it all with such grace! I wish people were more aware of the profound lessons that people with Down syndrome have to offer to the world! They have the capability to teach us more than any classroom will ever be able to! So, open your eyes, mind and heart to those with special needs....you might just learn something great!

"The Lord is their strength, and He is the saving refuge of His anointed." Psalm 28:8

CUTE - Day 3

2010-10-03T22:53:00.002-04:00

Enough said! :)

"So God created man in His own image; in the image of God He created him; male and female He created them." Genesis 1:27

HAPPINESS - Day 2

2010-10-02T20:33:00.002-04:00

So........

I said that I was going to blog for the next consecutive 31 days, to talk about Gavin and to raise awareness to Down syndrome.

It's only Day 2, and I have already had a hard time finding time to blog! How am I going to do this for 31 days straight?!

Anyway, I've decided over the next month to talk about the characteristics of Gavin and what he brings to this world. Today's topic is HAPPINESS.

Gavin may not be able to talk or walk, but he can brighten up a room like no one else can! He is such a HAPPY boy and almost always has a smile for you!

There is nothing like a smile from a person who has Down syndrome! Gavin's entire face lights up when he smiles and he radiates happiness! In fact, half the time when he smiles, he smiles with his entire body! How can you be in a bad mood with this face around you everyday?!

I bet he made you smile! :)

I know that he brightens my days, and he also seems to brighten other's days too. Here are some pictures of him visiting with Grandma. She says that he is "the light of her life." Well.....she says that about all of our boys, but I can definitely tell that Gavin makes her happy!

The world is definitely a happier place with Gavin in it!

"Happy are the people who are in such a state; Happy are the people whose God is the Lord!" Psalm 144:15

31 Days of Blogging! - Day 1

2010-10-01T09:30:00.002-04:00

Grab This Button

I can't believe that it is October already! Didn't September just arrive?! Time is probably my worst enemy. I know that I would be a much more patient Mom, if time wasn't always against me and my boys! Seriously.....why do the minutes fly by so quickly?! And, why is every single minute of the day so very full?! And, why do my boys have no concept of time, which makes me have to turn into a referee.....blowing the whistle, (aka: yelling at them constantly), to get us ready for anything and everything?! Whew! Anyway, time certainly flies and I can't believe that October is already here!

And, since time flies and it's already October....this means that it is Down syndrome awareness month! It is a month set aside to educate others about Down syndrome. Four years ago, this would have been just another month, but now it's a month with a lot more meaning to me.

The statistics are that 90% of people who find out they are carrying a baby with Down syndrome, end up aborting their baby. This statistic makes me so very sad. I wish that I could talk to each one of these Mommas, before they make this decision, and tell them what a blessing this baby will be to them!

Before Gavin, I might have been sad for someone who was told that the child they are carrying has Down syndrome, but now I would be SO HAPPY for this person! Gavin's life may have been littered with many health issues and heartache. And, he may not be the "typical" Down syndrome child, due to the major stroke that he had. And, our family may have to go through daily struggles, due to the many health issues.....but.....it has ALL been so worth it! I can't even begin to sum up what a blessing Gavin has been to me and our family!

Down syndrome is not a life sentence! It's actually a giver of SO MUCH MORE LIFE!

So, in recognition of this month, I hope to post an update for the next 31 days of October....to share Gavin with all of you and to hopefully share the blessing that he has been to his family! He may have an extra 21st chromosome, but these extra chromosomes have only brought about extra blessings and love to our life!

I absolutely adore every single one of Gavin's extra 21st chromosomes, in every single one of his blessing filled cells! We are so blessed!

"The blessing of the Lord makes one rich, and He adds no sorrow with it." Proverbs 10:22

Gavin's Gang

2010-09-28T09:57:00.002-04:00

"Guess what I did this past weekend?!"

"I rounded up my gang, and we all headed to the Buddy Walk!"

"My gang was much smaller this year, because my Mom said the walk caught her by surprise, but I was happy to have all of these wonderful people to walk with me!"

"Our family looks forward to this day each year! It's a time to get together with lots of other cool kiddos, like me!"

"My brothers get to carry cool signs with pictures of me on it!"

"And, we get to walk with a great bunch of people, who all have something in common.....that they all have a special person in their life who has Down syndrome, just like me!"

"My brothers get to fight over who gets to push the guest of honor.....that's me!"

"I get to just smile and look cute, while I meet some really great people!"

"Here are a few of those great people. They did a dance that they learned in their dance group."

"It was so much fun to watch, and it was even more fun when they called us out to dance with them!"

"Here is me and my Grandma dancing! I loved it!.....Probably because I LOVE music so much! Plus, my Grandma is a great dancer!"

"I can't wait for next year's Buddy Walk! Thanks to everyone for coming out to support our family and other awesome people just like me!"

Here is the verse that we have on our team shirts:

"Your word is a lamp to my feet and a light to my path." Psalm 119:105

Gavin's World

2010-09-24T10:06:00.001-04:00

Since we spent most of Gavin's actual birthday waiting for his cousin to be born at the hospital, we had a mini celebration a few days later. Here are some pictures from his party.

Gavin's brothers made him homemade cards. They were so excited about Gavin turning 4 years old! So, as soon as I reminded them that his birthday was coming up, they went hard to work making the perfect cards for him!

I absolutely adore that my older boys put so much effort into celebrating Gavin! There are many people in our lives who seem to forget about Gavin's birthday. It's probably because they figure he can't do anything anyway and maybe they figure he doesn't know the difference either. This kind of makes me feel sad, but my boys definitely make up for it! They treat Gavin like they would treat anyone else and this makes me very happy!

You can see in the picture above what Nolan wrote on his card to Gavin. He wrote Gavin's name and then put words that describe Gavin, by using the letters of Gavin's name. For G, he put "great boy", for A, he put "adorable and awesome" and for I, he put "important." The "I" description really got to me, because I look at Gavin as being important, but I know that many people seem to look at Gavin as just being here and not as a person with a purpose. I was happy to see that Nolan sees the importance of Gavin, because in the broad picture, Gavin really has more to teach us than a lot of people that I know do!

Gavin may not be able to talk, walk or play a major roll in his own life, but his being here creates huge lessons for people to learn. He shows us that we are very blessed and that we shouldn't take things for granted. He shows us that you can be happy, even when life is difficult. He shows us love. He shows our boys the meaning of being caring, helpful and loving to others. And, he shows us that being dependent is actually a great thing! Gavin is very dependent on us, and this has made our family become less selfish and more giving of ourselves. And, it has shown us that we are dependent as well.....dependent on the help and goodness of others and, most importantly, dependent on God!

Outside of our home, Gavin might not be considered by others very often, but in our home he is a huge part of our world! We look at Gavin as an equal.....and sometimes we even look at him as being better than us! Gavin's world is full of love and happiness! So, when his birthday comes around, we really celebrate the gift of him!

We give him gifts that he may not be aware that he is even getting:

And, we make him cake and cupcakes, even though he isn't able to eat them:

And, we gather together and Thank God for the blessing of Gavin in our life for one more glorious year!

Because Gavin wasn't supposed to even live this long! And, we aren't guaranteed another year with him. And, because Gavin is a beautiful boy,

who has feelings and who makes us laugh,

and who gives us a sense of great purpose,

and a sense of PURE JOY!

It may have been Gavin's 4th birthday last week, but we are the ones that have been given a gift!

"Blessed be the Lord, Who daily loads us with benefits, the God of our salvation!" Psalm 68:19

Gavin spent his 4th Birthday at the hospital.....

2010-09-22T09:59:00.001-04:00

.....and we were actually happy to be there!

Here is a clue to why:

Gavin was getting an extra special birthday gift!

He received a cousin on his birthday! And, I finally became an aunt!

My sister and her husband Mark, welcomed their first child a week early, which happened to be on Gavin's birthday! I personally count September 15 as a very special day, because this is the day that we were blessed with Gavin! And, now this day was made even more special....by the birth of Tate Doty Burton!

What a great birthday gift for Gavin! We were, and are, so happy and excited to have this new little person in our life to love!

Here is my mom loving on Mr. Tate, just a couple of hours after his birth:

And, here is the little Tater Tot, a few days later:

Isn't he a sweet, little honey?! I'm in love!

My beautiful sister and her bundle of blessing:

And, the two birthday boys together!

We used to think Gavin was so little, but now he looks huge!

I think Gavin is excited about this extra special birthday gift! I know that I am!

Welcome to the world Tate! And, congrats Amy and Mark! We are so happy for all of you! And, happy for us too.....we now have your little one to love!

"O Lord, our Lord, how excellent is Your name in all the earth, who have set Your glory above the heavens! Out of the mouth of babes and nursing infants You have ordained strength..." Psalm 8:1-2a

BIG Day.....Make that a HUGE Day!

2010-09-15T09:50:00.001-04:00

Today is an exciting day around here!

It's Gavin's Birthday!!!

Four years ago today, our family received a huge surprise and an enormous gift!

The gift of Gavin!

Today he and I are going on a little road trip to pick up one of his birthday gifts!

"HMMM....what could it be Momma?"

You'll find out soon Gavin! Here is a hint: You will have to share! But, you will be so happy to do so!

WE LOVE YOU GAVIN!!! HAPPY FOURTH BIRTHDAY!! YOU ARE SUCH A PRECIOUS GIFT!

"This is the day the Lord has made; we will rejoice and be glad in it." Psalm 118:24

All of him...

2010-09-13T09:05:00.003-04:00

I love creeping into Gavin's room each morning and seeing him peacefully sleeping in his crib. I love looking at him in the early morning light, as the sun peeks through the window shade.

I love seeing his precious profile.

His adorable, small ear.

His tiny, curled up hands.

His out-of-control, hard to manage and gorgeous hair.

His little feet, with the tiny toe that hides behind all the others.

His wide, almond shaped eyes and his cute little button nose.

His soft, upper arms and the plump creases in them.

I absolutely ADORE all of him!

God really blessed me, when He gave me Gavin!

"Blessed are the poor in spirit, For theirs is the kingdom of heaven. Blessed are those who mourn, For they shall be comforted. Blessed are the meek, For they shall inherit the earth. Blessed are those who hunger and thirst for righteousness, For they shall be filled. Blessed are the merciful, For they shall obtain mercy. Blessed are the pure in heart, For they shall see God. Blessed are the peacemakers, For they shall be called sons of God. Blessed are those who are persecuted for righteousness’ sake, For theirs is the kingdom of heaven." Matthew 5:3-10

Gavin's Turn!

2010-09-10T09:03:00.001-04:00

"Guess where you are going today Gavin?!"

"You are going back to school again!"

Gavin was very excited about this!

Yesterday was Gavin's first day of school for this year. He would normally ride the bus to and from school, but the busing schedule is a mess, so I'm going to be driving him until they fix it. Gavin is only in school 2 1/2 hours each day and he was going to be on the bus longer than he was going to be in class! They had him riding on the bus for 1 1/2 hours on the way to school and 1 1/2 hours on the way back home! Which would mean that he would be on the bus for 3 hours each day! The school is only 15-20 minutes away and there are only a couple of other students that ride with him....so I thought this was crazy! Plus, Gavin is on his feeding pump 14 hours a day, so his feeding schedule would have been messed up too. Hopefully they get it worked out soon, because Gavin does seem to enjoy riding the bus.

This is how I found him when I picked him up from school yesterday. (The pictures are really bad because it was dark in the room and he was very wiggly and excited!)

It looks like he enjoyed his day! He is such a big boy!

I missed him, but I know that his being in school is really good for him and his development. But, when we got home I just kept holding him and hugging him, because I missed him so much!

Our other boys are enjoying being back in school too. It has been a busy, crazy week getting used to everything again, but it's going well. But, I totally miss having my boys at home with me! Is it almost summer vacation yet?! :)

"Now therefore, listen to me, my children, for blessed are those who keep my ways. Hear instruction and be wise, and do not disdain it." Proverbs 8:32-33

I'm gonna miss this...

2010-09-07T09:31:00.000-04:00

The dreaded day has arrived. I have to send my boys off to school again! :(

I'm going to miss conversations with Jake, his helping hand with Gavin and his goofy humor.

Jacob begins 9th grade today! When did he get so big and become a handsome Freshman?!

I'm going to miss listening to Nolan practice piano throughout the day and his great smile and helpfulness.

Nolan is starting 5th grade today!.....Seriously?!

I'm going to miss seeing Caleb play with and read to Gavin during the morning hours, his goofy faces and his telling me that I'm beautiful all day long!

Caleb starts 2nd grade today! He is so excited.....but I am so sad!

I'm thinking that Gavin is feeling quite sad as well. He's going to miss all the extra attention that he gets throughout the day! Of course, he begins school again on Thursday and he is gone about 3 1/2 hours at school each day, so he'll get lots of attention there too! But, in a couple of days I'm going to be sad and missing Gavin too! :(

Happy 1st Day of School Boys!!! I love you and I'm proud of you! I'm going to miss you very much! Love, Mom

"A wise man will hear and increase learning, and a man of understanding will attain wise counsel." Proverbs 1:5

Who says.....

2010-09-04T09:13:00.001-04:00

.....that you can't go for a walk in the rain?

Even when your youngest boy isn't so sure about this, since he hates water!

But, you give it a try anyway and he ends up having fun, despite the water!

And, so do your other boys!

Because it's a lot more fun being outside in the rainy drizzle,

than it is being stuck inside because of the rain!

And, you find that you hardly even get wet,

when you are covered by lots of beautiful trees!

I love spending times, like these, with my boys!

"...and the heaven gave rain, and the earth produced it's fruit." 1 Peter 5:18

SEPTEMBER FIRST?!!

2010-09-01T09:45:00.003-04:00

SERIOUSLY?! It can't be! This summer has flown by!

This time of year I always get into a funk. I truly dread this time of year! I hate that summer is ending and I hate having to send my boys back to school! And, since this summer seems like it's only lasted a month, I'm really having a hard time accepting that it's September! UGH!

I would seriously homeschool my boys, just to have them with me, except I know that I wouldn't be any good at it! Plus, they love going to school for the most part.

I'm trying to figure out why I love having my boys with me so much. I told Joel that they drive me nuts most of the time, but even when I get away from them to go to the store, I miss them terribly! I've decided that deep down I must love chaos, fighting, arguing, whining, noise.....because that is what I hear with them all day long! I must love it, because I can't stand to be away from them!

I guess I just have to face the fact that I'm crazy.....this is the only explanation that makes sense! :)

I still have a few more days with them home with me, so I hope to make the best of them!

As for Gavin, I think he's really going to miss his brothers too! He's only in school a few hours each day and when he is home with just me, I really think that he gets bored.

Speaking of Gavin, a weird thing happened with him lastnight.

Gavin was so emotional! Maybe it's because he is feeling sad about his brothers going back to school again too? He was really sensitive to noises and was startling at every little thing, and then he would get his pouty face going and break into sobbing episodes. It was so sad to see!

At one point, he was doing well. We were singing songs together, and then he just broke into a crying episode. It was almost like he didn't know how to express his happy side and it turned into crying instead! He was happy one moment and trying to sing with me, and it was like he couldn't make himself sing and smile, but he really wanted to, but couldn't figure out the emotion he wanted to express. So instead, he burst into tears! It was really sad!

This went on and off for about an hour and it took Caleb to get him out of this funk. Caleb is really good at making Gavin happy, but he was away at Joel's softball game, so he couldn't help at the time. When he got home I told him to talk to Gavin and it did the trick! I think it's because Caleb is so full of energy and goofy noises and this distracted Gavin from whatever was going on inside his little head.

Poor boy! I wish that I knew what was going on in that sweet little brain of his!

Well, I'm off to spend time with my boys and try not to think of the fact that they are starting school in less than a week! :(

"Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you." Deuteronomy 31:6

What's in your town?

2010-08-30T11:50:00.004-04:00

Our family wanted to go on one last adventure before school starts next week. We had planned on heading out of town for a couple of days, but then decided that packing up our bunch would be more of a hassle than it would be worth, and it would also mean that we'd be spending unnecessary money. So, we came up with an alternate plan.....and we are so glad that we did!

We decided to have an adventure by exploring our town. We live here, but we rarely go out to see what it has to offer. And, guess what?! There is a lot of fun to be had around here, and it hardly costs a thing!

We started our day by having a picnic lunch by the river. Then, we walked along the riverwalk, making our way to the downtown area.

Here we are standing by the river, across from the fishladder.

As we made our way through the downtown area, we ran into lots of fun things to explore and see. We went through a few hotels that are there. These hotels are not the type of hotels that the VW's ever stay at.....too expensive and too classy for us! The boys were in awe of all the "fancyness"! These hotels and many other buildings in the area are connected by a skywalk, so we rarely had to set foot on the streets! The boys loved walking through the "sky" and looking at everything down below! Caleb kept asking if we knew how to find our way back to our van and home again! :)

At the end of the skywalk, in a parking lot below it, we found a wakeboarding competition going on! They had brought in a few above ground pools and had them rigged up for the competition! Pretty cool!

After we left the competition area, we found a Polish festival going on down the street! We aren't Polish, but it was fun to celebrate with them for awhile!

Then we made our way over to the Civil war monument.....and then on to the newly remodeled downtown library.

Joel couldn't stay awake at the library in all the quietness! We aren't used to quiet at our house!

Gavin thought that this was pretty funny!

After the library we walked the boys through the college campus that Joel and I once attended. It was fun to see the changes that had been made since we'd been there and to share some of our experiences with the boys!

Then we walked over to the Calder, which is a sculpture made by Alexander Calder. It is a main fixture in the Grand Rapids area. I've seen it many times in my life, but for some reason it looked smaller to me than it used to look. I guess things lose their wide-eyed characteristics as we get older.....but the boys thought it was way cool!

Next to the Calder is a giant swing. This also looked smaller to me! (I must be getting old!) But, the boys thought it was huge and lots of fun!

Gavin had fun listening to his brothers' squeals, as they flew through the air!

We finally made it back to our van.....Caleb was quite relieved that we were able to find our way back! :)

Lastly, we drove to the ballpark and enjoyed a night watching some baseball!

When we went up to purchase our tickets, a lady offered us 2 free ones, so we only needed to buy 3 of them! I love when this happens!

Here is Gavin looking for flyballs.

And, here he is yelling when they scored a run! Either that, or he's yawning from boredom??? :)

There is nothing like bringing the family to the ballpark!

So.....that was our Saturday! We had a FANTASTIC day and it only cost us $15, besides the cost of some food! I seriously can't remember a day that was more fun for our family! We got to share time together, stories with each other, explore and stay active.....and it hardly cost a thing.....and took very little planning! Our boys are still talking about how much fun we had!

So, what's fun to do in your town? Take a trip around town and you might find that there is a lot more to do than you thought there was! Plus, I bet you will make a great memory and have a ton of fun! If you go, share your pictures with us.....maybe we'll be tempted to come visit you some day! :)

"I rejoice at Your word, as one who finds great treasure." Psalm 119:162