Then.....and.....Now

A week and a half ago Gavin went in for a sedated heart echo, and to have his pacemaker read. I usually get nervous before these visits...I spend time wondering if we will get good, or not so good results. After we got home, the boys were asking me how it went, and then Nolan and Caleb started reminiscing about the days that Gavin spent a lot of time in the hospital.

They were remembering out loud what they thought about those days. They kept asking me questions about why Gavin was in the hospital so often, and just how bad his health was back then.

During those days, it was difficult for me to grasp just how our other boys were doing during those trying times. They seemed to be doing well at the time.....but you never know how much children grasp, and what things they may be worrying about, or not worrying about.

Gavin's 1st couple years of life were very fragile. He was in and out of hospitals, and was a very sick little guy. He had to go through a whole lot in those days!

Doctors were always very pessimistic about his outcome for living long. It was an extremely difficult time for us as a family! We were separated so often....with me and Gavin spending time in the hospital, and Joel trying to juggle work and children, and our other boys going from one grandma's house....to the other. I felt so torn between being there for Gavin, and being there for the rest of the family. It was a long, long road! In fact, Gavin spent 4 1/2 months straight for one of his stints in the hospital.....from Dec 26th to May 12th. (Most of this hospitalization being at a hospital 2 hours from our home.) When I think back to these days, I wonder how we managed the uncertainty, the separation from each other, the worrying, the stress, the pain. It was very hard! But, by the grace and strength of God....we made it through! Maybe even leaving us stronger than before, and definitely leaving us reaching for God at a greater frequency!

Nolan was communicating to me last week, that he never knew Gavin was as sick as he was. He was asking me about how serious Gavin's situation was back then. So...I started sharing more with him. Like, how one doctor told me that "You will probably never bring your son home." I remember that day so vividly. Gavin had just suffered a hypoxic brain injury.....at the fault of doctors that he was under the care of! His heart was in serious condition, his lungs were a mess, and he had just started having seizures due to the brain injury. I was a wreck! But, I had enough faith to trust that God was bigger than this situation, and that only He knew the plan for Gavin. So, I told that doctor, "I WILL be taking my boy home, and I will love him and care for him, and he will live!" I even told the doctor that I would "do a better job than they were doing, since they were obviously doing a poor job of taking care of him!" (I was very distraught over the fact that Gavin suffered a stroke due to errors they had made!) Obviously, I did not know if Gavin would ever come home with me, but I NEEDED to believe that he would at that very moment! Thankfully, God's plan was on track with mine! PTL!!!

When Caleb was remembering back to those days, he told me that he just thought babies spent a long time in the hospital! : ) Ahhh.....to have the innocence of a young child! : ) He said he loved going to visit Gavin in the hospital! He only remembered the fun parts of it all. This gives me comfort, knowing his young mind wasn't boggled down with worry and heartache. He also told me that when my sister had her son a couple of years ago, he was so surprised that Tate came home from the hospital so quickly, because he thought being in the hospital for weeks was the norm. Thankfully this isn't the case for most babies....but unfortunately it is the case for some families.....and it is truly a heartwrenching time!

By the way, Jake says he also remembers the hospital days positively. He says it was always fun to go to the hospital to see Gavin. I know it was harder on him, since he was older than his brothers, but I'm very relieved knowing there doesn't seem to be any long term effects from those hectic and worrisome days.

Fast forward to a couple of weeks ago:

Gavin went in for his heart check up. Keep in mind that his heart is still severely damaged. He wasn't "supposed" to do this well. His Mitral valve is still leaking a ton, and he was "supposed" to have needed a valve replacement years ago. Guess what?! God's plans were different than doctors' plans! And, we are so thankful and blessed by this fact!

Here is Gavin after they placed an I.V. to put him to sleep for his echo. He looks like he's thinking, "What the heck did they put in my arm?!" He didn't even cry for the placement! He is such a brave, good boy! (Unless you you are giving him a bath! He still thinks we are killing him during this process! Crazy boy!)

Here he is after he was asleep, during the echo. They let me hold him while they put the medicine in the I.V. for sedation. It is quite scary to watch and feel your child go from wide awake and moving....to out cold and limp, in seconds flat!

I hate that Gavin has to go through more than the typical child.....but he does it with such grace! He makes me feel so proud of him! He is a true inspiration to me.....I love him so much!

We ended up getting great results too! Gavin's heart function is good despite the significant valve leak. There are no longer any holes detected in the heart. His pacemaker is only having to fire about 8% of the time, and there is a 6-24 month battery life left on it. We have to go back in during the summer for further testing, and we know that he will need surgery to replace the battery and the leads on the heart someday....but otherwise his heart is tolerating his body's needs quite well! What a blessing!

Gavin's life may have started out very rough, but when I think back to "then"....and when I think about "now", I am amazed by the grace God has supplied our family! Not only did we get to bring our boy home, we have even seen him flourish in our home! Don't get me wrong, life isn't very easy on him....and days aren't exactly easy caring for him either! He is a 35 pound six year old, who can't even sit up on his own.....which makes dressing him and carrying him around quite strenuous. He can't eat by mouth, and is only fed by a gastric tube. Plus, he takes many meds and nebs per day. We have many doctor's visits for him, and we worry about him getting sick due to his already compromised health. He can't tell us how he's feeling or what he wants....his mind and body are functioning like that of a 4-9 month old. BUT.....he is alive, he is home with us, he is such a happy boy, and he is a wonderful blessing from the Lord!

"Then"....and....."Now." Wow! What a difference!


"Indeed we count them blessed who endure. You have heard of the perseverance of Job and seen the end intended by the Lord — that the Lord is very compassionate and merciful." James 5:11

I am so thankful for Gavin!

A poem: I KNOW DIFFERENT
by Tricia Proefrock
------------------------------------------------------------

Dear mommy,


I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do...I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me...I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid...I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren't good enough, and that you will fail me...BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. ♥

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

Truly blessed! Truly proud! Truly happy!

Thank You God!!!


"Thanks be to God for His indescribable gift!" 2 Corinthians 9:15

Happy Gavin = Happy Momma!

Gavin has been quite sick this week. I turn into one big anxiety ball when Gavin gets sick. I hate to see him feeling miserable! Plus, once you've spent time in the E.R. or in the hospital with your child on numerous occasions for just having the common cold, you tend to think the worst and dread what may come if he continues to worsen.

I've been so thankful and amazed at how healthy he's been this last year. But, he made up for it this week! With this illness he was starting to go downhill with his breathing and I was very worried he was heading towards hospitalization! (He shared his illness with me, so I have an idea how he felt.....Rotten.....I was struggling to breathe, so with his lungs already compromised by lung disease, it must have felt worse for him.) Thankfully, he turned the corner quickly, and is once again a happy, smiley boy!

See for yourself!


I love when my sweet boy is feeling well and happy! "This is the day the Lord has made; we will rejoice and be glad in it." Psalm 118:24

Bring the Rain

A few months ago the reality of caring for Gavin just hit me. I think it's when he suddenly grew a couple of inches and gained a few pounds. I realized that the future isn't going to change the fact that Gavin had a major stroke that killed off most of his brain, and he's most likely going to need to be carried around, and have all of his needs met by me forever. (Or as long as God blesses us with him in our lives.) Ever since this reality set in, I've been really struggling with this enormous responsibility. I've felt depressed, and even angry at times.....I just haven't been allowing myself to see the blessing that Gavin is.....something I've always been able to do in the past. Instead, I've felt a huge burden on my shoulders and it hasn't felt good at all!

This morning I heard a song on the radio after dropping the boys off at school. It's a song I've heard about 100 times, but this morning it really spoke to me. I sat in the car crying my eyes out and feeling such a sense of relief! I was, again, made aware of the fact that this world is NOT about me! I have been given this 'burden' for a reason........a reason that is way bigger than me!

I now feel refreshed, and ready to face my days with more gratitude! I hope to make this song my anthem in life.....and focus on the 'rainbows' that pop up with every 'storm' that comes my way!



"Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain"




"I set My rainbow in the cloud, and it shall be for the sign of the covenant between Me and the earth. It shall be, when I bring a cloud over the earth, that the rainbow shall be seen in the cloud; and I will remember My covenant which is between Me and you and every living creature of the flesh." Genesis 9:13-15a

It Is Well With My Soul

We sang one of my favorite hymns in church this morning, and it's been on my heart all day long. I get tears, and sometimes even sobs, whenever we sing it. It always brings me back to the days when Gavin was an infant, and not doing well at all. We had several scares during those trying months in the hospital, and yet, each time I thought we were going to lose him, I had such a peace surrounding me.

The following song speaks of such peace. Thank You Lord!



1. When peace, like a river, attendeth my way,
when sorrows like sea billows roll;
whatever my lot, thou hast taught me to say,
It is well, it is well with my soul.

Refrain:
It is well with my soul,
it is well, it is well with my soul.

2. Though Satan should buffet, though trials should come,
let this blest assurance control,
that Christ has regarded my helpless estate,
and hath shed his own blood for my soul.
(Refrain)

3. My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
is nailed to the cross, and I bear it no more,
praise the Lord, praise the Lord, O my soul!
(Refrain)

4. And, Lord, haste the day when my faith shall be sight,
the clouds be rolled back as a scroll;
the trump shall resound, and the Lord shall descend,
even so, it is well with my soul.
(Refrain)


Here is the hymn, and also the story behind the man who wrote the lyrics for the song. He wrote the song after suffering many horrific trials in his life.....and yet.....It was well with his soul!






"He restores my soul; He leads me in paths of righteousness For His name's sake." Psalm 23:3

It just hits me.....right in the heart!

A couple of weeks ago I read something that caused me to spiral into tears. This happens to me every month or so. I can be having a perfectly fine day, and then a thought enters my head and all the feelings, concerning Gavin and his lot in this life, begin to flow right out of me! I suppose it's a good thing to have the ability to release the emotions.....the emotions that tend to build up inside when caring for a child like Gavin.

At the time, I had just read a comment to someone else that was congratulating them on the birth of their child. Just a simple comment of, "Oh, he's just perfect!" That's all it took to open the flood gates of my soul!

It brought me back to the day Gavin was born, and the months following his birth.

I don't recall having anyone say such a comment to me after Gavin was born. And, looking back on those days, I felt a little cheated. These thoughts might seem quite silly, but that's what I was thinking at the time.

This got me thinking about God's creation. Look around you! His creation IS perfect! And, this includes Gavin as well! It includes everything He has made!









If you know someone who has a child similiar to Gavin, I ask that you tell them, "Congratulations!" Be happy around them, and for them! They might be fearful of the future, but they are still happy to have this child, and they still think their baby is perfect! Every baby is a gift from God, and the parents need to see your happiness for them, and to hear you tell them that their baby "is perfect". Trust me.....reaching out to them in this manner will mean so much to them! They will appreciate you more than you know!

This Momma certainly sees God's perfect creation when she looks at the pictures above of her sweet boy!

I am so thankful that God gave me, and all of us, the following verse to focus on! It always amazes me that He thought of everything we need to know, and shared it with us in His Word! What a source of comfort! What an awesome God!


"For You formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well." Psalm 139:13-14

Spread the Word!

Today is "Spread the Word, to End the Word" day.

So, Gavin and I are spreading the word!





R-word | Spread the Word to End the Word


retarded defined:

(adj) underdeveloped, esp mentally, and esp having an IQ of 70 to 85.


Is this what you are saying about someone when you use the word retarded? Are you implying that they, or the something you are refering to, has an IQ at or below this level? Are you even aware of this person's IQ level?! Does that song, outfit, car, or whatever you are using this medical terminology to describe, even have an IQ?!

Gavin, all of his special friends, and I, ask that you think of us when you even consider using this word. Think of those who may not be as blessed as you are.....those who had no choice in whether or not they were born or became cognitively delayed. Think before you speak!

Gavin kindly thanks you!




"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

Sharing Gavin's Newest Equipment

I am always looking for great ideas, equipment, and tools to use with Gavin. When you have a child who can't even sit up on his own, you are always looking for a spot to place your child when you're not holding him. It really saddens me that Gavin is unable to move from place to place on his own, and also that he's unable to tell me if he's uncomfortable in a certain position.....or just plain bored from being in that position.

Because I am very concerned about his comfort level, I try to find chairs and equipment that he will be comfortable in.....or at least help him to gain some type of therapy by being in it for awhile. I also look for items that are not too heavy for me to carry, and those that are easy to transport.

I have gained so many great ideas from other Mommas out there, and I'm always interested in learning new ideas. So, Gavin and I wanted to share a few items that he has acquired in the last few months.

First, is his new stroller. I pretty much hate the typical wheelchair for Gavin. They just aren't made comfortable enough! I found this push chair at Adaptive Mall, and I love it for him! It is big enough for him (holds a child up to 90 pounds), and it's comfy, with many of the features I was looking for. The only issue I have is that it takes a couple of steps to fold it up, and it takes up a lot of room in the back of the van. Otherwise I would give it an A.

Here are some pictures of it:






And, here's a link to where you can buy it:

Special Tomato® EIO Push Chair | Adaptivemall.com

Next, is Gavin's new chair:

Here are a couple pics of it on it's floor stand:




And, a pic of Gavin happily sitting in it on the couch:



It's more comfy than it looks, and we love it! It is very lightweight, easy to clean, and it can also be strapped to a chair to use at the table!

Here is a link to it as well:

Soft-Touch® Sitter Mobile Tilt Wedge Kit | Adaptivemall.com

Here is a pic of another chair we got for Gavin:



It is the chair we use at the table for him to sit in while we eat together. It isn't as comfy, but it helps to have him sit up fairly straight in a sitting position and gain a little therapy while using it. It is so lightweight and small enough to transport very easily! It can also be used on the floor, and it won't tip over even if the child is wiggly in it. It looks like it would tip over when the child is sitting in it on the floor, but it stays upright!

Here is Gavin sitting in it:



We had to buy a couple of accessories for it to work for Gavin. The 1st accessory is a headrest that fits into the top of the chair. The 2nd accessory is an abductor to put between his legs so he doesn't slide out of it.

We didn't buy it from Adaptive mall, but here is a link to it (and the accessories) on their site. We found it cheaper by googling the name of it, and bought it elsewhere.


Small Wenzelite Seat2Go | Adaptivemall.com


Optional Headrest | Adaptivemall.com


Optional Abductor | Adaptivemall.com

I also found this flimsy table type tray to use with it.



It has loops on it, so that we can connect Gavin's toys to it.....so he can grab for them and not lose them by having them fall on the floor. This has made dinner time wonderful! I was always picking his toys up from off the floor when they slid off his old chair and tray! I feel badly that we sit and eat, and Gavin can't eat with us! Knowing that at least he has his linky toys to play with, which gives him something to do while we eat together as a family, makes me happier. He had a very expensive Tiger chair that insurance bought for him a few years ago, but he was never happy sitting in it. He is quite happy sitting in this chair, and it is was a fraction of the cost!

Here he is playing with his toys while using the tray with the chair.



Here is where I bought the tray. It won't link to the company, but you can copy and paste into your browser if you want to check it out.

http://www.leapsandbounds.com/catalog/product.jsp?productId=537347&parentCategoryId=85188&categoryId=117211

So, there you go! Just some of the equipment that we use with Gavin on a daily basis. Hope you enjoyed a look into Gavin's special needs world. And, I hope some of you Mommas benefit from learning about a new tool to use with your child!

Also, check out the toy bar that Joel built for Gavin's toys to hang on!



Pretty fancy and useful, huh?! Gavin is very thankful that his daddy is handy with wood and tools! I love it, because Gavin can easily reach his toys, and they are at his eye level.....Plus, I love that it is visually appealing to my eyes as well! We used to have plastic plumbing pipes put together to hold his hanging toys, but that wasn't very pretty....so now Gavin and Momma are both happy! : )

Raising a child with severe special needs, like Gavin's, can be a guessing game. And, somtimes it takes a whole lot of improvising! But, I sure feel blessed that there are products out there to help equip us in this life...to make life easier and more comfortable for me and my precious boy!


"All Scripture is given by inspiration of God, and is profitable for doctrine, for reproof, for correction, for instruction in righteousness, that the man of God may be complete, thoroughly equipped for every good work." 2 Timothy 3:16-17

Down Syndrome Basketball Player Inspires

Just watched this on Facebook and had to share!

Down Syndrome Basketball Player Inspires Tennessee Team

I had tears rolling down my face.....partly for this young man, partly for all who have Down syndrome, and partly for my sweet Gavin.

I ache each and every day for him, wishing that he hadn't suffered a massive stroke that has left him unable to do almost anything for himself. I wish so badly that Gavin had been given the opportunity to do things like the young man in the video! Heck! I'd just love it if he had the capability to sit up on his own!

I long for the day when I will see Gavin running in Heaven! This day can't come soon enough!

I guess it took this video to get me out of my blogging slump. This blog has always been mostly about Gavin, and the last couple of months have been hard on me, concerning him.....and concerning a few other issues. So, I haven't felt like blogging much. I mean, who wants to read about a pitiful mom, who wants so much more for her son?

Things are actually going fairly well for Gavin, but it's the day to day issues that I struggle with. Gavin can't sit up....he can't walk.....he can't talk.....etc. And, it's so hard to want so much for your child.....knowing that there is nothing you can do to change what happened, and there is nothing you can do to change the future.

Days are tough! But, I have my sweet boy and his smile lifts me up each day! I thank God for those amazing smiles! And, I'm thankful to know that even though Gavin's future on this earth is not full of promise.....his future is great.....because God holds that future.

Love one another! Be thankful for your abilities and those of your children! Life is so very fragile.....I'm really trying to focus on handling this fragile life with lots of prayer.

Watch the video, if you didn't! It's inspiring! And, if you ask me.....so is my precious boy!


"Finally, there is laid up for me a crown of righteousness, which the Lord, the righteous Judge, will give me on that Day, and not to me only but also to all who have loved His appearing." Titus 4:8

So much to say & share.....

.....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

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!

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!

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

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!

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