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
14 comments:
That last pic of him looks a lot like Jax. I remember even the day after his brain injury he looked better, and I thought he would be ok. Its when you get home that you notice the delays. But they are both doing so good.
Gavin is amazing. He has overcome so much, and he smiles on. Thank you for sharing him with us all. :)
I remember our car ride the day we had Alex, I was so nervous about having a third child. Little did I know what was to come. It was a beautiful sunny crisp September day for us as well.
I havent ever liked change, especially when you are pushed to the ground by it,but I am slowly learning to roll with the punches.
Gavin is such a fighter! He is doing amazing!
He is such a beautiful boy, I love Gavin stories! I think Addy's birth parents were going through some of the same hospital/emotional things the same time you were. Addy was born in October and wasn't released from the hospital until March. It was mainly lung and bowel issues. I'm so glad that God gave you Gavin or I never would have been able to "meet" you guys and share my Addy!
Wow, goosebumps and tears. Thank you for sharing your thoughts and the beautiful pictures of Gavin. My heart is broken and uplifted at the same time. I love how you can convey your darker emotions and thoughts so well and then end the post praising God. You are an inspiration Alicia.
Wow, what a fighter he is. Gavin is truly a miracle and he gets his strength from his family.
You do inspire us all.
What a testimony, Alicia, to God's faithfulness and to His work being displayed in your and Gavin's life. What a blessing to know you and to read this! And how wonderful to see how far Gavin has come!
Just this week I was looking at older pictures I have of Gavin and thinking how far that little guy has come!! Its a nice change to see his smiling face compared to the ventalator pictures!
He's just such a pumpkin! Sending love and hugs to you all.
Love,
Julie
Straight into my heart, Alicia...God bless you.
Thank you for sharing. I appreciate your testimony and heart so much! ~Erin Young
Beautiful post.One that sounds all too familiar but because it sounds familiar is the exact reason I am so drawn to Gavin and your family."Average" child with Down syndrome ... what a I say often is a "Typical"child with Down syndrome ...I get it.I understand.But I too would not change the plan that God placed before us,for anything,ever.Zoey is exactly who I was suppose to have.Things are exactly the way they were suppose to be.
"Life is what happens to you while you're making other plans."~John Lennon
Alicia,
I so love reading your blog--you are such an inspiration. You dont know how much reading this meant to me.
April
Hello friend. I haven't forgotten about the nebs. I see our pulmo on the 24th. My ped did mention today something about maybe flovent, because we have a huge asthma family. Do these nebs help chronic lung disease? I guess I can ask my pulmo about that when we see her.
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