Well, today marks the day that Von came home from his crash, and the moment our lives really changed. Our new normal began, and our little boy was a whopping 8 lbs 8 ounces at 3.5 months old. He was just over 20 inches long, and he was basically starting his development as a newborn at 3.5 months old. We missed the months of massive weight gain and growth while he had no growth hormone or thyroid in his system. He was so far from the growth chart, and we didn’t even have a percentage of where he was. In the past year, this little guy has come a long way. However, he’s still pretty small, and he is definitely behind the curve in many places his peers are at.
When you have a child, you sort of have this romantic idea of what it is all going to look like. Everything is going to move right along, growth and development were going to be easy. None of this would really be anything you had to think about because growth and development are natural progressions of a child. Unfortunately for Von, those things do not come easily. He’s had to fight and claw, to learn how to do everything that a normal child does easily. He wasn’t even crawling until 11 months old, and at 15.5 months old we are not very close to walking. He’s walking around furniture, pushes his toys, but he cannot stand on his own, and he will not take steps by himself. He has peers in daycare that are under 1 year of age walking circles around him. In just 1 week, he is moving to the toddler room at daycare, and he will be the only kid in there that doesn’t walk. Every time I see a child walking that is younger than Von, I almost feel like I’ve been punched right in the gut. I know that every child will develop on their own schedule, but Von’s development is definitely delayed because of his disease. He’s delayed because he was sick for 3 months, and he nearly died. When he’s missing his milestones when he should, it reminds me that he isn’t a normal kid. Parents and friends try to comfort me, and they assure me he will walk when he’s ready. I totally get that, and I understand that he’s on his own time table. However, a part of me knows that had he not been so sick for all that time, he would be walking now. Then that in turn makes me feel incredibly guilty. How did we miss this disease for all that time, and how was it that a near death experience was the only way we found out?
Before Von was diagnosed, he was the quietest baby I had ever been around. He never cried. At night when he was hungry, he would only whimper. It was because he didn’t have any energy to cry. Once those medications started working, Von started crying and crying a lot! I think the guilt in me will never truly go away, and I suppose its guilt that every mother carries. We all want our children to have no obstacles, and we want them to have a better life than we did. Yet, I find myself totally doubting myself daily that I somehow created this disease with something I did during my pregnancy. Doctors have all told me it was a fluke, and I did nothing wrong. It’s really, really hard to believe that some days. Some days that guilt is so heavy on my heart that it makes it hard to smile, and I become very short with people around me. I don’t laugh as much as I use to, and I spend a lot of time worrying about what is next for Von. For the first year, I was in a complete and utter haze. I would definitely call it survival mode. I went through the motions, and didn’t really stop to swallow the magnitude of what we were dealing with this disease. Now the haze is lifting, and I’m beginning to understand all the things that make us abnormal and all the parts of his treatment that make him so different than the children around him. I try so hard not to let that get me down, but it really makes me sad to think that he will miss out on certain things because of this illness. The total optimist in me says ‘that’s ok, we can find and cultivate things for him to do that are better than the things he will miss’, and then the pessimist in me thinks “he can’t ever play football or hockey because his doctor told us it’s off limits”. There are days I’m completely lost in all the things he will never be able to do, and it truly makes me so sad. We as mothers want are kids to have every possible option, and we want them to be the one to decide they don’t want to do something. I hate that there is a list of things that he will never be able to do, or there are obstacles in his ability to ever have children that most kids never have to think about. It all seems incredibly unfair.
I know this is so depressing, Right? I get that. I’m still working through so much of the grief that comes with having a child with special needs. This is not how I imagined motherhood. That does not mean that I don’t love and adore my son because I absolutely do. It is more that I just wish that I could take this all away, and make our lives a little bit easier. This is all just a journey for me and my family. Getting this out there for people to read is helping me heal, and getting your feedback and your experiences is helping me more than you will ever know. Please continue to send me notes or comments. I love reading them! I have to get back to the weekend now. Take care, and try your best to see the glass half full. I know I’m trying really hard to do the same.