I had a conversation with another mother this morning. She was asking about Alex. It is funny how people will stumble over their words; unsure of how to ask questions because they don't want to offend me. They watch him struggle to do something that a 9-year-old boy should be able to easily do. They hear him talk and stare and ask, "What's wrong with him?" I shared that Alex has all three forms of Apraxia, he also has Ataxia and all three of my children have a bone disease that requires surgeries and possibly other "forms of recovery." Said mother was quiet for a couple of seconds and then she sighed and said, "I don't know how you do it. I don't think I could do it. It must be so hard! I'm so sorry."
Honestly, it's not hard. Everyone prays for healthy children--we did the same. While all three children require surgery and Alex requires therapies and specialists--my children ARE healthy. They don't have a terminal illness and are happy and healthy gremlins. For this, I am thankful.
Alex can't play sports because of his legs and other issues with his bone disease. He is fine with this because the Apraxia and Ataxia make it difficult for him to perform certain tasks. Logan doesn't want to play sports because Alex can't. We spend so much time at therapies and doctors appointments that we are all okay with this. All three children have had surgeries and there will be more surgeries in our future. Alex's legs are becoming a concern and we will start dealing with solutions (surgery, leg braces, etc.) in the near future. Alex's issues do affect school work and his learning, but he is a hard worker and he is very determined. We couldn't ask for a better kid! He has to work twice as hard as other kids and he does get overwhelmed at times, but he always stays positive. It is one of the MANY things I love about this boy!
"I don't know how you do it. I don't think I could do it!" You say this because you don't have to do it. If your child had certain issues you would be able to do it. We have been doing it since Alex was about 18 months old--he's 9 now. It is just life for us--it's our normal. Having a special needs child just makes you look at the world a little differently. Little accomplishments are cause for big celebrations.
He is perfect. He is beautiful. He is SO smart and so funny! He is such an awesome kid and I am so blessed to get to call him mine! (I'm blessed to have all three of my happy gremlins!) You should look past his special needs and see the awesome person Alex is! There is more to him than his disease or special needs--so, so much more! So, don't sigh or shake your head, don't feel bad for us. Don't act like we're special people because of our circumstances--this isn't the case. And most of all, don't feel sorry for us. There is no reason for that. I'm not sorry! I love my children just the way they are and having to deal with medical issues and overcome obstacles have made them stronger and have taught us, as parents, how to be positive and how to be thankful for so much--including three children with bone diseases and a special needs child.
You give me that sympathetic look. You see a boy with special needs.
I see a super hero.
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