As many of you know, my children happen to have a rare life threatening disease. This of course has changed our lives on many fronts. I remember thinking that I would never be capable of handling a special child with different needs than others. At one point in my life I would pity the parents I would see with these children. I could not imagine how difficult their lives were and I did not want to ever have to deal with that myself. Little did I know that eventually I would have no choice in the matter.
Richard, my oldest son, has a different father but he was quite a fussy baby but bright boy once we got past that first year. He would make you laugh and smile and just did all the things that "normal" kids do. I met my husband and we married and could not wait to have a baby together. Joshua was born the July following our wedding. I will never forget his birth and the joy we felt but it was like being a new mom all over again. He didn't meet some of his milestones and I thought that there might be something wrong but all the docs just said he was fine. At 4 months old he had his first seizure and that was the one thing that changed our lives forever. A year later after trips across the country and many sleepless nights he was diagnosed with Mitochondrial Disease. It is life threatening and it was apparent by that point that he was having trouble with simple tasks that so many of us take for granite.
Michael was born and I had learned so much with Joshua that the minute he was brought to me, I had that terrible feeling all over again. He had pretty nasty tummy troubles and just cried a good chunk of the time. Michael's obstacles were much different than Josh's ever were even though they have the same disease. It took me a while to get the docs to look at him since he did not seem to be like Joshua to them. A mouth swab would give him the diagnosis I knew he had from the day he was born.
Richard, my oldest, happens to have ADHD and Tourrett's Syndrome. His Tourrett's was only diagnosed by sheer accident when I took them to Texas to see a doc down there. It gave me a better understanding for him and the way he thought and once we knew what it was, I was able to meet his needs better. At this point he has not been diagnosed like his other two brothers with Mito but he has his own set of obstacles that he deals with every day.
Growing up I did not have trials like my children do. It took me by surprise to be given these children. No one in my family happens to have children with these needs and that us surprising since my grandparents had 10 children. I felt so alone and lost in the beginning especially when doctors had no idea what to tell me where the kids were concerned. Hugh and I muddled our way through but I did not ever have time to have a pitty party. Thinking back about it now, there really was no need for one since they each brought so much joy and I would do anything to help them become the best they could be and not what standards that our society puts them all up against. They have all taught me so much in their short lives than I had ever learned from all the years before I was blessed with them. It is not easy by any means and there are days where you can feel the stress of it all taking its toll on the whole family but never would I trade any of it for a "healthy" child.
George was my sickest baby. I know he would have been the one with all the problems. He would have had many issues and needed a lot of intervention and help to be able to do just basic tasks. His spirit however was just so pure and you could see he was truly God given. I would often times sit on the floor with him and do the physical therapy that I had been taught years before with Joshua. We did lots of things to ensure he was just eating properly since his food did wind up in his lungs without warning because of an issue with fatigue making it hard for him to complete a meal without aspirating. He had reflux and a whole other host of problems but none of them defined him and neither do the other issues each of the boys have.
As of now Gabrielle seems fine but there are a few things I am keeping my eye on. We were told that she had a high chance of having Down's Syndrome. The docs offered us further testing while I was pregnant with her but we refused it. They kept a close eye on her but as far as we can see she doesn't have it. I remember a time where I would have wanted to know, no questions asked. Now, no matter the problem the baby would have, I would carry the baby no matter what since I believe it is God's decision and that I have learned these children are not burdens and they do not suffer in the capacity that we think they do. Pain is really relative for all that they bring to this world and their little lives no matter how long they are here are meant to be for some reason.
You are probably wondering why I am babbling on about all of this. Today I was fortunate enough to attend class with our son Michael. They were having their Field Day that they called "World Series" Michael's class played the other preschool class in a game of baseball. With the heat we were all inside having this world series in the gym. Sitting on the sideline cheering out little guy on was nothing but amazing. There was a room full of kids with all sorts of problems ranging in severe to mild. They were all 3 or 4 years old and no matter their problem they all played and you could see nothing but sheer joy in their eyes. A little girl who could not walk unassisted with Down's Syndrome even played and you could just see God's presence in each of these children. She sat on first base waiting for the next kid to hit and started to wave at Hugh and I and she worked so hard to get to each base with the assistance from an adult. Other kids needed other adaptive things in place but they all participated.
My mind went to George and wondering what his life would have held for him. Many people will say that he was probably better off but I don't know about that. In the end God called him but this whole even made me realize yet again that we all have a purpose here. That room was filled with more joy and excitement than I had ever felt in any "normal" setting classroom. I've been fortunate enough to sit in both places. This feeling just filled my heart to flow over with such joy as I watched these kids. They truly proved that special needs children are a gift to this world and not a burden but rather just SPECIAL!
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