Thursday, July 30, 2009

In The Blink Of An Eye

I've been thinking again! Actually, I think and analyze things a lot of the time, but sometimes something happens and it causes me to think even more in depth about a subject. This is what happened this week. I told you about our friend that had an accident and because of it, he and his family are going through a very uncertain and difficult time in their life. (Here is an update: He is off the ventilator and improving some daily, but he has a LONG road and recovery ahead of him! Please continue to pray for him and his family!) Anyway, Ever since I heard of his accident, I've been thinking about how fast life can change for us. We can be minding our own business, just going through life trying to do our best and then.....BAM!....our whole life can change in an instance! It's really scary to think about really!

All of this thinking has taken me back to the day Gavin was born. Joel and I were just going through our lives as normal, expecting to deliver healthy boy #4, and then.....Slam!....our lives changed dramatically! We seriously drove to the hospital thinking we'd have a healthy baby, (Because any tests that I had while pregnant didn't prove otherwise.), and then drive home a couple of days later with a cute bundle of joy! Instead, we did get a cute bundle of joy, but he was made and packaged a WHOLE LOT differently than we could have ever imagined he would be! And that day, September 15, 2006, changed our lives forever!

I just remember looking over at the doctor and nurses spending a lot of time with him after he was delivered and then they brought him over and said, "We think your son may have Down syndrome." This took my breath away for a minute, but then I thought to myself; "I can handle this." Then they wisked him away for awhile and came back to tell us that he had a heart defect. I thought to myself, "I can not handle this!" My biggest fear had always been for one of my children to be deathly ill or to possibly die, and now both of these possibilities were thrown at me in an instance! I remember asking the doctor, "What is his life expectancy?" We were told that after he had his heart surgery, he should live the average life expectancy of a person with Down syndrome and that he should be able to do what the average person with Down syndrome is able to do. After hearing this I thought to myself, "This will be VERY difficult, but I can handle this!"

Of course, our plans and the doctors' plans were not exactly what the future held for Gavin and us! He, and we, went through 3 very uncertain and life changing months before he had his heart surgery. We had to live very differently. We now had many doctor's visits, oxygen tanks all over our house, feeding tubes, increased calorie formula and many long and sleepless nights. But even then we didn't know what a struggle our next following months would be like.

The day of his surgery came and went a couple of times, due to him being too sick to have it, but after it did take place the doctors were so happy with the results! They said that they "went in thinking they'd come out with the worst case scenerio, but came out with the best case scenerio!" We were so happy and we were looking forward to our "average" life with a child who happened to have Down syndrome. The following months proved to be very different for us!

Gavin was supposed to come off the ventilator in a few days after surgery, but this is how he looked for 2 1/2 months!

Their "best case scenerio" turned into many more months in the hospital and many days of uncertainty, and wondering if our baby was even going to live! But he lived, finally got off the ventilator and was transfered back to a hospital closer to our home. We started to think that maybe, just maybe, we were getting closer to those days that were promised to us back on the day that he was born, the promise of an "average" life with a child who had Down syndrome. We were so looking forward to these days!

But.....then our lives changed again in the blink of an eye. Unfortunately, some mistakes were made by doctors at this hospital and because of them, Gavin suffered a severe stroke. We went through more very uncertain days, wondering if our baby boy would live, and once again, he fought and came through by the grace of God! Little did we know what our future would hold, due to the stroke and the new seizure disorder, but he was ALIVE and we were thankful for this!

This picture was taken about 2 weeks after his stroke. We thought he looked quite good considering they thought he was going to die a couple of weeks before this picture was taken!

After spending almost 5 months in the hospital, we finally got to take our fighter home! And yes, we thought that we would finally be able to begin our "average" life with a child who has Down syndrome. Of course, the story didn't end there because we obviously do not have the "average" life with a child who has Down syndrome. We soon found out that his stroke was massive and that it affected his entire brain and that his future didn't hold much hope. He would most likely never walk, talk or do much of anything else.

On September 15, 2006, our life changed in an instance! We got Gavin. Along with Gavin came a whole new life, a lot of stress, a lot of work and a lot of uncertainty. Did I ask for any of this? NO! Did I welcome this change and trial? NO! Would I change anything if I could?..........That is a very difficult question to answer! Would I change God's plan of having Gavin in our lives? NO WAY!!! Although, I do long for that "average" child with Down syndrome and heart defects. I do long to see him sit up one day and to walk some day, like that "average" child with Down syndrome, but I know that this is very unlikely. And I do wish that he had never had a stroke. But, would I REALLY change anything if I could????? I can honestly say that my answer would be "No."

These trials and tribulations have brought so much clarity to my life! I actually feel more free than I did before Gavin. I also feel more strong.....Strong in the Lord and stronger in myself. I have learned so much about myself, about God, about others and about love. So.....that day 2 years and 10 1/2 months ago, the one that changed my life in the blink of an eye, it may have brought about much suffering, but it also brought about SO MUCH MORE!

Thank You God for suffering! I'd prefer not to endure anymore serious suffering, of course, but I AM thankful for the suffering that I have endured! I have been given a gift through this suffering! And I'm so thankful for the growing up that I have been able to do since this wonderful gift came along! Life may not always be easy, but it sure is full of great purpose and much love, plus, I'm confident that there is a reason for everything!

"My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing." James 1:2-4

Monday, July 27, 2009

Where's Gavin?

I was vacuuming the other day and when I came back to check on Gavin, this is how I found him.

Where's Gavin?

There he is!

I guess he doesn't like the sound of the vacuum or he wanted to play hide-n-seek! What a cutie, don't you think?!


I have a prayer request for all you prayer warriors out there. A friend of ours, who works at our boys' school and who plays softball with Joel, had a serious accident this weekend. He is in the hospital and on a ventilator right now. He has lots of swelling and has broken numerous bones throughout his body. He has life threatening complications from the accident and surgery. Please pray for Jason and his family! He is one of the nicest people you will ever meet and I would really appreciate your prayers! Thank you!!!

"Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much." James 5:13&16

Friday, July 24, 2009

A Step Back in Time

This summer I have been trying to find some fun, interesting and inexpensive things to do together as a family. I was struggling for awhile, but lately we've been coming up with some great things to do. Last weekend we went to a town about 45 minutes from us. They have an oldtime town set up there and that weekend they were also having a Civil War reenactment going on. The boys LOVED this! Here are some pictures of our day there.

We got to see what an oldtime school house might have looked like. The boys were surprised to learn that so many grades were taught in one room, by one teacher!

They also were surprised by the assignments that these students might have been assigned. They thought that it was a lot easier than the things that they will be taught in their upcoming school year.

Here are the boys getting used to sitting at desks again! Hopefully they sit this well behaved and act like they are interested in their books this much, when school begins in September!

We had a fun day! Gavin slept half the time, so I didn't get any pictures of him there. He was probably getting sick at the time, and we just didn't know it yet. Poor little man!

I love the idea of living during this period. It just seems so simple compared with today's world. But then I think about doing laundry the way that they had to do it, making dinner the way that they had to do it and using the restroom the way that they had to do it, and then I am thankful for the conveniences that we have today! Not to mention, the medical practices that we have today! We got to see how the doctors and nurses treated soldiers that got shot in the war. Let's just say that it was quite gruesome and Nolan almost lost his lunch after watching them act out their roles and another boy there DID get sick after watching them!

Gavin would definitely not have survived past birth if he had been born during that era! So, even though it was fun to go back in time for the day, I feel blessed to live in this day and age for sure!

"Blessed is he who reads and those who hear the words of this prophesy, and keep those things that are written in it; for the time is near." Revelation 1:3

Thursday, July 23, 2009

More Like Himself Again

Ever since Sunday night, Gavin hasn't been himself. He was fussy and was sleeping more than usual. I started to worry, thinking it was due to the start of his possible seizures again, but then he came down with a fever of 102 degrees and I realized that he was just coming down with something, which he proved to me when he got a stuffed up nose and a cough. Monday he slept most of the day and didn't even really want to be held. He seemed to be telling me what his shirt says today:

He is still coughing, but is happier and more himself today. He even scooted his way over to his AFO's and stander today to check them out.

I haven't put him in them all week since he has been feeling so rotten, but maybe I'll try again today, since he is doing better. In fact, this is how he has been all morning.....All Smiles!

I LOVE Gavin's Smile!!!

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

Wednesday, July 22, 2009

Starting to Feel Sad Already.....

I went out shopping lastnight, which was the first time in about a month that I was without at least one of my children. I have seriously not been alone for I don't know how long. I thought that I would enjoy my time away from children, and I did for about an hour, but then I actually started to miss them! Am I crazy or what?!

I think that I started to feel sad because I saw school supplies at the store. Then suddenly, I was so sad! I am dreading the start of school again! I'm not one of those moms that need a lot of time away from her children. I look forward to a little breather once in a while, but for the most part, I would rather be with my children than anyone else in the world. I can't figure out why either, because when I am with them constantly, they drive me crazy after awhile! But, when I get the chance to get out on my own, I spend a lot of my time thinking of them and wishing that they were with me!

I've decided that I must enjoy noise, fighting and craziness! I'm a glutten for punishment I suppose. Don't ask me why, I can't figure it out myself! I guess, I just really love my boys! I am not very good about sharing them with others either. I'm a little selfish I guess. It's pretty sad when you can't even figure yourself out! Oh well.

Anyway, I'm feeling sad that summer is flying by so fast. Crazy fast! And, I don't like it one bit! I have even considered homeschooling our boys recently, but I know that I wouldn't do a good enough job of it, so off to school I'll have to send them.

Until then, I'm going to enjoy every single moment with them! Well, except the arguing, boredom, disobedience, etc. Actually, I obviously enjoy all of these things as well! I seriously must be nuts!

Here are my boys on a nature walk that we took recently.


"The day is Yours, the night also is yours; You have prepared the light and the sun. You have set all the borders of the earth; You have made summer and winter." Psalm 74:16-17

Monday, July 20, 2009

He's more than you see.

It really saddens me knowing that others don't see Gavin for all that he is. Sure, there are people who realize all that he is worth, but for the most part I think that Gavin is just seen as a boy who is sick and unable to do anything. This is so far from the truth in my eyes!

I wish that more people could see Gavin like I see him. When we are away from home Gavin does not act himself. He prefers to be at home and he comes alive when we are at home. So many people don't get to see Gavin in his true form. This makes me sad. I see the looks that people give him and me. I see the pity. I sense the uncomfortableness. I understand it, but I don't like it!

But, most people don't get to see the real Gavin. And, most people don't take the time to get to know the real Gavin. He may be severely delayed, but he isn't absent. He may appear to not know what's going on, and he may appear to have no purpose in life, but this is far from the truth!

Gavin has feelings and he shows them to us. He smiles when he hears familiar voices or when people talk to him nicely. He gets really excited when his brothers come into the room. He starts "talking" when the phone rings. He "sings" when we sing in church. He cries when he is lonely. He even acts goofy sometimes and he even has a little bit of a naughty streak in him! He initiates and gives me the best kisses that I have ever received! He comes alive when he hears his Momma's voice or the silly songs that I sing to him. He brings more joy to our family than anyone ever could!

I was recently commended for being such a good Momma to Gavin. I was given a "pat on the back" for not showing resentment towards him. This actually shocked me! Why would I have resentment towards this precious boy?! He did nothing to deserve any of this! Not to mention, he has actually made my life better, just by being here! Sure, life is more complicated and I can't do everything that I would like to do, but my life is definitely more full than it was before I had him. Sometimes I even think to myself, "Why was I given this amazing gift?! Why me?!" I have something that so many others will never have and God actually trusted me with this wonderful gift!

There are days that I wish that Gavin could do a WHOLE LOT more, but there is never a day that I think that life would be better without him.....NEVER! I wish that people could see the true Gavin, like I see him. Unfortunately, some will never take the time to see Gavin for what he really is. And, even more unfortunate, many will never take the time or be able to see God for What and Who He really is either! I find both of these truths to be very sad.

"But blessed are your eyes for they see, and your ears for they hear; for assuredly, I say to you that many prophets and righteous men desired to see what you see, and did not see it, and to hear what you hear, and did not hear it." Matthew 13:16-17

Saturday, July 18, 2009

Flying High

Yesterday Joel took a day of vacation and we took the boys on an outing. We went to the:

We had a great time and the boys LOVED it! Joel and I loved it too, because it was FREE! They have a special running through the summer. It's free to be admitted and you just have to pay $2 per ticket for the rides. There are about 8 rides/experiences and we told the boys that they could each pick 2 to go on. They had a blast!

If any of you live in the West Michigan area, you should try to go this summer. It is so fun and so worth it since it's free! Here are some pictures of our day.

They even had little planes that were Gavin's size! :)

Hope everyone enjoys their weekend!!!

"Oh, that I had wings like a dove! I would fly away and be at rest." Psalm 55:6
"As for me, I will call upon God, and the Lord shall save me." Psalm 55:16

Thursday, July 16, 2009

The UFO's Have Arrived!

Gavin's Ankle Foot Orthotics (AFO's), or as we like to call them UFO's, are here! We went in yesterday to have him fit for them and to take them home. He is very stiff in the ankles, so it's kind of a chore to put them on and he doesn't enjoy the process, but once they are on he is tolerating them.

On the other hand, he is NOT tolerating them on while in his stander!

Poor baby! I tried him out in it close to bedtime lastnight, so I'm hoping this is why he was so sad/mad about it! We'll try again today and hopefully he'll approve!

In other news, Gavin has been having possible seizures again. This started a few days ago. The movements are unlike the seizures he used to have, but it's a new thing that is worrisome. Before this started, he hadn't had seizures for about a year and a half. So, I'm a little worried and discouraged!

The seizures that he used to have would be rythmic in nature and he would extend his arms out and back in in a jerking motion. He would also deviate his eyes and appear to be somewhat "out of it." This would last about 3 minutes. Then he would sometimes cry after having them and seem sleepy or go to sleep after having one.

The movements that he is having now only last for 1-3 seconds and there is only one movement involved. He starts out looking somewhat surprised by something and then his arms extend outwards and become stiff. He sometimes makes a grunting noise while doing this. Afterwards he actually smiles and appears as if nothing has happened. And, he remains "with it" throughout and afterwards.

He does have spasms or clonus daily, and I don't know if this is another form of them or if he is indeed having seizures again. His neurologist wants him to have a repeat EEG since this is something new for Gavin. Gavin and I are NOT happy about having to do another EEG! He and I HATE going in for these! I have to try to keep him awake for half the night before the procedure and they have to put all these sticky probes all over his head and wrap his head up, then he's supposed to go to sleep while they are testing his brain waves. It is SO NOT fun and such a hastle! And, Gavin usually cries and doesn't cooperate with the falling asleep during the test part. UGH!

I pray that he is not having seizures again! I hated watching him have these! Plus, this would mean that his medication would have to be increased and this makes him more sedated. He is just now beginning to be more active and alert and I don't want to have him so groggy again on a daily basis! Please pray that these will turn out to be nothing big and that he won't have to be drugged up so much again!

"Trust in the Lord, and do good; dwell in the land, and feed on His faithfulness." Psalm 37:3

Tuesday, July 14, 2009

Check This Out!

There is a park near our home, that was made to be accessible for children with handicaps. Before having Gavin I thought it was a great park and that it was a wonderful thing to have. Now that I have Gavin, it means even more to me! There are so many places that are difficult to go to when you have a child in a stroller or wheelchair. It's heartwarming to know that there are people out there trying to make fun a little bit easier for those who can't always share in the fun.

All of our boys enjoy going here. I'm not sure how much Gavin gets out of the experience, but I love knowing that it's there for him. Plus, it provides stimulation for him, which is a great thing. During the flu season we are stuck inside so much, that he gets a little frightened being out in the world. It's so important to get him out during the summer months, to get him used to things and to stimulate his brain and senses.

Isn't this a wonderful place to do this?! There should be more places like this! Do you know of any other resources like this?

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