Friday, September 25, 2009

It's a Brand New Day!

This is what the sky looked like at our house this morning!

I really needed to see this picture of majesty this morning! It has been a long week for me, a week filled with lots going on and lots of emotions storming my brain! I don't appreciate days like these, but at least there is tomorrow to look forward to and God's gift of beauty surrounding us every day!

Most days I'm fine with the fact that Gavin had a stroke and that he will never be the same again. But, every couple of months something brings me back to those days that he was suffering, and the day that he suffered his stroke. This happened to me again this week. I'm not in the mood to discuss it right now because I'm feeling quite raw with my feelings and very uncertain about things.

Do you ever just feel like you are running on a hamster wheel, doing the same things every day and not getting anywhere? Do you ever feel like there is just no real purpose to your life? Do you ever ponder "What is the purpose of this life?" This is how I am feeling this week.

Yesterday I asked Joel and Jacob these questions. Surprisingly, they both had the same answers for me! Their answer to what our life's purpose is was; "To honor and glorify God and to do His will." I guess that I'm surrounded by some very smart guys in my life, because this is the truth and it's just what I needed to hear! The problem I have is that, some days it's just so difficult to glorify God! I haven't done a very good job of doing this, this week. I'm feeling rotten emotionally and I'm having a hard time accepting mine and Gavin's purpose in this world.

Every evening I find myself standing at the kitchen counter doing the same thing that I do EVERY DAY! I am mixing up Gavin's food for the next day and I am drawing up syringes with his medications for the night and the next morning's dose. EVERY SINGLE DAY! When I am doing this, I am thinking to myself; "I'm back here already? Where did the day go? What did you do with this day?" Most days I feel like I've done nothing much of anything, even though I was busy the whole day long! What do I have to show for all this busyness?

Sorry for dumping all these crazy emotions on you, but I have to dump them somewhere! Do you ever wonder about life's purpose for you? Do you ever think that there HAS to be a greater purpose for you? This is how I'm feeling this week. My only consolation in all of this, is that it HAS gotten me thinking about my purpose in life and hopefully something good will come out of all this thinking that I'm doing! This is what I'm working on anyway. Hopefully soon I'll come up with what that purpose may be.

Thankfully, I DO KNOW that there is a purpose and reason for everything. And, thankfully, I have reminders of it all around me. For example, there was today's sunrise and there was yesterday's conversation with the men in my life. Plus, there are scriptures in the Bible that tell me this. Here is one that Caleb is learning for school this week.

"I have fought the good fight, I have finished the race, I have kept the faith. Finally, there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will give me on that Day, and not to me only, but to all who have loved His appearing." IITimothy 4:7-8

Until then, I'll keep fighting and praying and searching.....


Please pray for Jaxson and his family today. Jaxson is going in for surgery today and he has not been very stable lately. Please pray that his surgery goes well and that his family will be given peace today. They are also having to make the decision of whether to have a trach put in Jaxson or not. His airway is extremely compromised, but having a trach is a life changing thing. I feel such a bond with Jax and his mom, because Jax suffered a stroke, much like Gavin's, and their life seems to parallel our life in many ways. I hate knowing that they are having to suffer even more than they already have! So, please add them to your prayers today! Thank you!

"...Let us run with endurance the race that is set before us, looking to Jesus, the author and finisher of our faith." Hebrews 12:1

Monday, September 21, 2009

Tough Love

Here is the update that I promised you, on how Gavin is doing at school. So far, school can be summed up in 2 words: Great and Bad! I feel like, for the most part, it's going great and Gavin, for the most part, feels that it is bad.

Here are the reasons that it's bad:

Gavin does not really like to be at school. The first day he did fairly well, but the second day he cried more than half the time. (Just so you know, on registration day his teacher told me that Gavin would cry the first few weeks of school. I laughed and said; "Gavin won't cry! He rarely cries, unless you give him a bath, brush his teeth, put anything in his mouth, or take him to the doctor. He won't cry, he's an easy-going boy who is happy most of the time.") Anyway, obviously the teacher knows my son better than I do, because he has cried more in the last week and a half, than he has all year long! I feel so sad for my little man! I hate to see him sad or in distress!

He doesn't like the new noises that he hears in his classroom. He startles and cries with every loud noise. He doesn't like the fact that they are working him and making him try new things. (Obviously, I have babied him a little too much! But, just so you know, I will continue to baby him, because he is my baby and I am his Mom. That's what Mommas do! They are supposed to comfort their children and give them love! A friend of mine who has a child with special needs once told me that her job is to love her son and the teacher's and therapist's job is to teach him and make him do things that he needs to learn. I didn't really understand this statement until now.) Anyway, Gavin is not really impressed with this new routine.

Here is Gavin crying while doing one of his tasks: (I don't blame him, I'd be mad too!)

Now, Here are the reasons that it's great:

Gavin's teacher, assistant teacher and therapists are AWESOME!!! They are so loving towards him, but they are also on the ball! They have him doing so many things that can't help but do him some good in the end! I am so excited and hopeful about this year! I haven't held out much hope for Gavin's future, since I was pretty much told not to by his neurologist, after Gavin's stroke. I am still cautious with my hope, but I can tell that school will do some good for him!

I started out staying with Gavin the whole time that he was at school, which is 2 1/2 hours. I wasn't about to leave him alone with people that I don't even know and I wanted to be there in case he was sad. I found that he actually calms down better for the teachers than he does for me. I guess he knows that he can really lay it on thick for his Momma and I will say; "Poor baby, you don't have to do that!" But, with his teachers, he cries a little, then they pick him up and comfort him, and he stops crying and they go back to work. It got to the point that I couldn't stand to be there watching him cry anymore! So, little by little, I would leave the room and when I came back they would say that he had done quite well. I didn't believe them at first, but now I do. His teacher says that she is almost too honest and she would tell me the truth! She also said, that he really does better when I am not there! I suppose it's because he knows that I'm his comforter and if I'm there he can get some sympathy. So, now that I trust the staff and know that he is being cared for well and that he actually does better if I'm not there, I have been leaving him there for about 2 hours alone.

This gives me about 2 hours to be alone, which rarely happens, and it gives me time to run errands or do things that I want to do. The bad part is that the school is about 20 minutes from home, so I don't get to go home during this time to get things done around the house, because I would spend most of that 2 hours driving there and back, so this is a dilema, but I'm figuring out things to do that are close to his school.

And, just so you know, Gavin isn't always sad at school, even when I'm there. His teacher said that he is tolerating it faster than she thought that he would. She said that he is crying less and less each day and is getting more comfortable in these surroundings.

Here is a picture to prove it:

He loves when they give him his alone time at school, to just chill out! He especially likes laying in this bean bag chair! His teacher says that he just lays there 'talking' and smiling, or he takes a snooze.

I was feeling badly for making him endure this change, but now I realize that it's a great thing for him and that Moms have to give tough love to all of their children! I give tough love to my other boys, knowing that they will benefit from this love, and I have a feeling that showing Gavin some tough love will benefit him as well!

"Love one another as I have loved you." John 15:12b

Also, please check out Gavin's fundraising page. We will be walking in this year's Buddy Walk, on October 10 at Millenium Park, starting at 10 A.M. We would love to have you sign up to walk with us or donate to this cause, if you are able. I've added a fundraising widget to the top lefthand corner of this blog that you can go to, if you wish to donate.

We love attending these walks! It is so heartwarming to see all of these children who have Down syndrome! The organization does so much good for this community of people and we have benefited greatly by their cause! They are a wealth of knowledge for parents of children with Down syndrome and they help to show that we aren't alone walking this road!

We hope to see you there, walking with Gavin's Gang!

Thank you!!!

Friday, September 18, 2009

What Has Gavin Been Up To This Week?

Gavin has been a busy boy this week! Here is what he's been up to.

He had a fun birthday! We took him and his brothers to a park, to celebrate his day.

We brought cake and sang to him.

He even tasted the frosting by licking the candle!

He wasn't quite sure about this, as usual, but he did better with it than he usually does!

He opened his present!

Then he 'played' at the park with his brothers.

He has also been going to school every afternoon. School is going so-so, I'll update you about school soon, in another post.

Daddy even came to visit Gavin at school on his birthday!

Gavin has been working so hard at school!

Gavin also had his physical this week. He checked out fine. Our regular doctor thought that he was doing quite well and Gavin even gained a little bit of weight since he was last checked. He is 25 1/2 pounds, which means that he's still not up to the 26-27 pounds that he was before he lost weight, but at least he's not losing weight anymore.

Gavin also received 3 shots. He got his last HIB, a flu shot and a pneumovac shot. The pneumovac is supposed to help prevent pneumonia. He's never had this one before, hopefully it does it's job! Gavin cried when they weighed him, cried when the doctor listened to his lungs, cried when he checked his ears, cried when he listened to his heart and cried when he checked out the rest of him. Then, in come the nurses to give him his shots. Gavin was half asleep by now, from all the complaining that he had done, so I told them to just give him the shots while he was on my lap and not to disturb him. Do you think that Gavin cried?..........Nope! I just don't understand this child! He gets so upset about the little things and then handles the big things so well! I guess he's a tough little guy, but he just doesn't like to be bugged.

He will be going to get the swine flu shot when it's available as well. I'm quite worried about Gavin being in school and around more people this year. It's supposed to be a really germy season and Gavin doesn't handle the flu or colds like the rest of us do. People keep saying to me that it will be good for him to be around others to build up his immunity, but the problem doesn't really lie with his immunity. Gavin's problem is the fact that he has a heart defect. Since one of his valves is leaking moderately, he already gets fluid sent to his lungs daily, which is not supposed to happen. Normally the blood flows through the lungs, gets oxygenated and then goes back to the heart to circulate throughout the body, but because Gavin's Mital valve leaks significantly, some of it stays in his lungs and some of the deoxygenated blood goes back to the lungs. (Here is an example: It's kind of like sharing a drink with someone who backwashes. The drink gets particles in it that don't belong. And, then the particles go into you when you take a drink. The drink is no longer 'pure', this is the same for Gavin's blood. The oxygenated blood is mixed with the deoxygenated blood and the body does not like this.......Sorry for the disgusting analogy, but it's all that I could come up with.) Not to mention, Gavin also has a lung disease, so his lungs are already fragile to begin with. When you or I get a cold or the flu, our lungs can handle the extra fluid usually. But, when Gavin's lungs get even MORE fluid in them, his just can't take it. This is why I'm worried.

He has been so healthy lately and I pray that he continues to do this well through the winter months too! I know that school is going to be so good for him, so we are just going to have to see how he does with all of this.

So, this is what Gavin has been up to this week. He's been a busy boy!

"Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth! The Lord of hosts is with us; The God of Jacob is our refuge." Psalm 46:10-11

Tuesday, September 15, 2009

It's Gavin's Big Day!!!

Today is a special day for our family!.....Gavin is the Birthday Boy!

"Gavin, How old are you today?"

"You're not 4 years old, Silly!"

"OOPS! Oh Yeah..."

"I'm 3 years old today!"

"Yep! You are a happy, adorable and lovable 3 year old boy!"

"Let's celebrate Momma!"

"You bet we will Gavin! Every year that we are blessed to have you in our lives is a wonderful day to celebrate!"


"I will praise You, O Lord, with my whole heart; I will tell of all Your marvelous works. I will be glad and rejoice in You; I will sing praise to Your name, O Most High." Psalm 9:1-2

Monday, September 14, 2009

Pruning, In Order to Bear More Fruit

I love it when I go to church and hear a message that seems like it was meant just for me! This happened for me just yesterday. Lately, I've been thinking about the struggles of life. It seems like so many people around me are suffering. There are those who have lost their jobs, those who have lost their house, those who are dealing with illnesses and injuries, those who are mourning the loss of a loved one.....I see so much heart-ache all around me and it has really been bringing me down!

I see myself as very blessed. Life is FAR from perfect for me, but considering, I have it VERY good! I am VERY thankful for this! Sure, I have daily struggles and sure, I have a lot on my plate raising a child with special needs, but I also have it quite good too. The thing that I am most thankful for is the knowledge that I have of my Savior, Jesus Christ. Having this knowledge makes everything else that is going bad in my life, so much easier to bear! I am thankful that I have always had this knowledge. I can't remmeber a day in my life that I didn't know God and the truths of the Bible. And, I can't imagine going through the hardships of this life, without having this wonderful knowledge! My life has always been blessed, having been given the gift of God in my life!

Yesterday, at church, our Pastor talked about how God prunes us, so that we can bear more fruit. This is just the sermon that I needed to hear! Since I've been feeling down about the many situations of others, I really needed an explanation of "Why?" these things happen to us! Even though I have always known God in my life, I still have many moments of weakness, when I ask, "Why?!" I asked, "Why?", when Gavin was born with a heart defect, and when he spent so many months in the hospital, and when he had his stroke. I knew deep down that there was a perfect reason, but I didn't like it and I wanted to know what that purpose was!

Today, I look back to the person that I was before Gavin and I am so thankful for him and the lessons God used to teach me, through Gavin! I used to think that I was so in control over my life. Actually, I knew that I wasn't in control, but I tried to control things WAY TOO MUCH! I was like Caleb, who has always said, "No, Let me do it!" And, just like Caleb, I thought that I should have more control over my life and desires. Thankfully, Caleb has Joel and I as his parents to set him straight and thankfully, I have God to keep me on track!

Our Pastor used the analogy of pruning back his tomato plants. The tomato plant grows extra branches on it, that in the end will bear no tomatos. These branches, if not pruned, or cut off, will end up sucking nourishment from the rest of the plant that will produce tomatos. If you don't cut off those bad branches, then the tomato plant will end up producing less fruit, because of these unnecessary branches. We are like a tomato plant. Sometimes we let the bad things in life suck all the good out of us. We let the 'bad branches' drain us of the good nutrients and then we can't 'bear fruit' because of it. By having Gavin and all the hardships that have come with him, I have been 'pruned' and I am now able to bear more fruit than I once was able to. God sent a hardship into my life to help cut away my 'bad' branches, the branches that I kept trying to hold on to, even though I didn't need them. I used to try to hold on to way too much control, but having Gavin has taught me that I am not in control and that when I give it to God, He WILL take care of it!

I believe that sometimes God uses our hardships to help trim the the branches of others as well. We may not gain more fruit from this hardship, but hopefully our hardship can lead another to look to God and then they, in turn, will be able to bear more fruit in their life.

Suffering Sucks(for lack of a more appropriate word), but it sure is easier to tolerate when you know that there is a PERFECT purpose for it! I, for one, am thankful for the suffering that I've had to endure in my life. I wouldn't be the person I am without it. God has used every situation to prune me to be the way that He intends for me to be. All that pruning sure did hurt, but each and every day, I am able to produce more fruit because of it! So, once again, THANK YOU GOD FOR SUFFERING! And, THANK YOU FOR SUFFERING ON THE CROSS FOR ME!

Take time today, to be thankful for the pruning that is going on in your life. Tomorrow may bring about much fruit and goodness!

"I am the true vine, and My Father is the vinedresser. Every branch in Me that does not bear fruit He takes away; and every branch that bears fruit He prunes, that it may bear more fruit. You are already clean because of the word which I have spoken to you. Abide in me, and I in you. As the branch cannot bear fruit of itself, unless you abide in Me. I am the vine, you are the branches. He who abides in Me, and I in him, bears much fruit; for without Me you can do nothing." John 15:1-5

P.S. Tomorrow is a big day for someone around here!!! :)

Any guesses who this might be.....?????

Friday, September 11, 2009

Gavin's 1st day of School

Gavin's first day of school was yesterday. You may remember that I was sure that I was going to cry.....but, there were NO TEARS! Of course, I stayed with him most of the time, so this might account for why I didn't cry. I stayed in his class because I wanted to see his reaction to being there and also to make sure that he was coping well with this new situation. He did well, for the most part.

Here he is on his way to school.

Here he is snuggling with his teacher.

He began his time there happy, but after one of his classmates started to cry, Gavin decided to cry with him! (He does this sometimes when someone else is crying. He's either very sensitive or he must think that's what he should be doing as well?!) He continued to cry for awhile, especially since the O.T. put him in a chair after that episode, and the chair made him work harder than he is used to working with his head and neck control, so he decided to cry and voice his opinion about this too. After crying, he decided to just check-out from his surroundings and he took about a 10 minute break and fell asleep. We woke him up and he was happier after his snooze. He was quite jumpy most of the time that he was at school though. He startles easily by noises, and he does this especially when he is in a new surrounding.

Next, he worked on visual light tracking and button pushing with his teacher.

His teacher said that since his blindness comes from having had a stroke, there are things that they can do to work on helping him learn to see better. His blindness is not a problem with his eyesight, the problem comes from his brain, which isn't telling his eyes what they are seeing. So, she plans on working on this with him. She said this makes her very excited, because it's such an accomplishment to see progress in this area. She had a student before that ended up seeing with the aid of glasses after 3 years of this training. Right now, Gavin is quite blind, even with the aid of his glasses, which is why I don't make him wear them. He hates having them on his face and he continually pulls them off, so since they really aren't helping him anyway, I feel it's not worth his discomfort.

Next, he watched a video that was of shapes bouncing around. The shapes were all red, black and white and the screen was really lit up, so he could focus on it since he always looks towards light.

Here he is just chillin' for a while.

And, here he is watching a light box.

Finally, here he is on the way home.

His afternoon at school really wore him out! He fell asleep within minutes of getting into the car to go home. He was also very sleepy most of lastnight. I guess he's not used to all this work and excitement!

All in all I think the day went well. I know that this will be good for him and I'm sure that he will get used going to school, the more that he is there. I plan on staying with him off and on for the next week or so, just to make sure that he does well with all of this. I'm hopeful that he will do fine and I think that EVEN I will eventually be fine with Gavin in school as well.

"I have set the Lord always before me; because He is at my right hand I shall not be moved. Therefore my heart is glad, and my glory rejoices; my flesh also will rest in hope." Psalm 16:8-9

Tuesday, September 8, 2009

Kicking and Screaming

There was a lot of kicking and screaming going on this morning at our house! If you had been here you would have heard; "But, I don't want to!" or "I'm not going to!" or "I'm going to cry!" And, just so you know, all of this was coming from ME, not our children! Can you guess what went on here this morning? Here is a hint: I dread this day EVERY single year.

Yep! You guessed it! It's the first day of school!

I actually didn't behave the way that I described above, but I surely wanted to! I LOVE summer vacation and having my boys home with me! But, today this ends. :(

Here are the boys before they left for school today.

Here is Nolan standing in line to enter school.

Here is Caleb standing in line.

And, here is Caleb putting his supplies in his desk at school. (He's excited to have a desk "that opens up!")

Jacob says that he's "excited about seeing his friends again, and having P.E. & Art class." Other than that, he's sad to see summer vacation end as well. Nolan says that he "is excited about EVERYTHING!" And, Caleb says that he's "50% happy and 50% sad."

So, how does Gavin feel about all of this?

He's his happy self, as usual! But, I think that he will miss his brothers and all the fun that they provide him too!

Gavin starts school on Thursday! I didn't cry today, like I thought that I would, but I'm confident that Thursday will get those tears a rollin'! Say some prayers for me, cause I think that I'm going to need them!

"Train up a child in the way he should go, and when he is old he will not depart from it." Proverbs 22:6

Thursday, September 3, 2009

Busy and Blessed!

I can't believe that it is already September 3! Where did the summer go?! I'm so sad to see it almost gone, but at least we have thoroughly enjoyed ourselves!

The last week has been a full one! We spent time traveling, visiting family and even doing something we've never done before! Of course, with the good comes the bad. I've also spent lots of time in reflection about life and feeling so sad for a couple of friends, Shan and Lacey & Jax, who are going through hardships, uncertainty and loss. Please continue to pray for them! Plus, as always, I'm dreading the end of summer and having to send my boys off to school again.

But, instead of focusing on the bad, here is a little of the good that we have been up to:

We've been relaxing and having fun in hammocks!

We've been filling Grandma and Grandpa's pond with fish!

We've been visiting family that we don't get to see very often!

We had fun playing with their pups!

And, even Gavin joined in on the fun with Grandpa!

Our trip last weekend was a long one, but definitely worth the miles!

We also spent a day at a Family Fun Center with another Grandma, an aunt and a cousin! The boys had a blast!

Finally, we did something that we've never done before. Joel and the boys picked much of the produce that was left in our garden yesterday and because we never know what to do with all the tomatos that we grow, we decided to try making homemade salsa!

Check it out!


Now, I just need to learn how to can it, so that we can enjoy it year-round!

I hope all of you are enjoying your last days of summer as much as we are! We are SO BLESSED!

On a totally different subject; I think that all this fun and busyness is making me very forgetful! Have you ever sent your child to their room to think about their actions and then 2 minutes later, totally forget why you sent them there? I did this with Caleb this morning! He disobeyed me and I sent him to his room to think about what he had done and told him to come out a while later to tell me what he had thought about, while he was in there. A few minutes later he came out to ask if he had been in there long enough and I had forgotten what he had done in the first place! I had to ask him, "What did you do that was naughty?" Man, I must be losing my mind! Oh well!

"But I have trusted in Your mercy; my heart shall rejoice in Your salvation. I will sing to the Lord, because He has dealt bountifully with me." Psalm 13:5-6