It's something most of us parents never address. But it's spoken in personal emails and discussed privately.  Most of us hear a lot that we are blessed and this was a chose path.  I get that but the stress especially as our kids get older takes a toll. On the entire family. Other sibling become adults much faster because they face a reality others their age could never imagine.
My son river is 15, he should be getting ready for games and playing with his friends. I did. I had a childhood. But it's not the same for him. He spends his days helping me. He is in charge of responsibilities that I could have never handled in my selfish teen age years. For that I feel both grateful and sad for what he is missing.
  He has mentioned many times he will never leave home. That makes me sad. He has already planned to go to college close by to be available to help. That is a wise and compassionate decision for someone his age.

But still more and more parents going through stress right now are talking. And there is much to talk about. We try to stay positive for one another. But we deserve meltdowns. I have them. Fears of the unknown, Noah sleeps in my bed every Night for fear something could happen and I would not be there to help. It's life with special needs.
  I found out today noah will be in a leg and scoliosis brace for the next four years. That is disheartening. No more tummy play. Loads of things he loves will now be constricted due to the fact I decided to prevent before things get worse. Is it worth it all?  Yes I will always choose quantity and quality and as long as this kid is smiling and giving kisses I know he is in agreement with what needs to be done.
But the stress remains. But how much is too much. My mom is falling apart. She doesn't understand why he has to go through so much. I just keep thinking what we do today only makes his life better down the road.
Tomorrow he goes under for the fourth time in 6 months. By far that is the scariest part. But it must be done. Still the heart is such a mess when you give your child's life to strangers and trust them to understand both the fear and anxiety it puts on the family and on a little boys body.
The good news? We areclose to the end of the surgeries. And for that I am grateful


Popular posts from this blog

Scoliosis and Schizencephaly

Sadie's story. Schizencephaly A journey of a brave sadie Bug