Dylann 5 days old

Dylann 5 days old

Tuesday, August 22, 2017

Special Needs Mom Thoughts - 70 days until surgery 

Most days I don't even think about Dylanns AMC anymore. She's come so far and it just becomes part of daily routines. Today for some reason things bothered me. I dropped her off at daycare this morning and on the way in she's walking in her braces while I push her walker and she says, "mom, I don't need my walker anymore, I can walk now. Let's give it to someone who needs help walking."

I then watched her go into her room and try so hard to chase around her girlfriends in the class. I am so proud of her determination and at the same time I felt so sad. She was always behind them so didn't catch up to the group playing but looked elated to be doing it. It was such a weird mixture of feeling so proud and such heartache at the same time.  I hope she always feels included but I know that's not going to be the case.  She's so excited to be independent and doesn't understand the road she starts next month having to start all over.

I'm in several different Facebook support groups for Arthrogryposis; some for moms only, some for any connection to the condition. There was a very heated discussion yesterday about if AMC moms can really understand what it's like to have AMC and ultimately that we really never will. Some adult AMCers went on to say how selfish we are for putting our kids through all these procedures nowadays when they all managed without them. I can't shake that discussion. I mean I trust my doctor 100% but his goal is to get her to walk independently without KAFOs. But would that be Dylanns goal if she could decide this? Are we putting our kids through too much pain when's she's perfect and happy right now? It's so hard to know if you're making the right decisions sometimes. I guess I have never thought of myself as selfish.  So those comments struck a chord with me. I felt that dichotomy this morning when she walked off. How do you know you're doing the right thing? This preparation just feels so much worse than last time.

Most days I don't even think about Dylanns AMC anymore. Today wasn't those days.