finding a voice

hotel in Glenwood Springs

If you read my last post, you might find it strange for me to say what I am about to say.  Lately, I have been feeling calm and composed when others ask questions or tell me about Henry's developmental level or make statements that really would have sent me into tears for at least a few hours if not the entire day.

Lately, I can tell others my son has cerebral palsy and ataxia and not cry about the therapies or the things he cannot do.

It is actually rather amazing and I'm starting to marvel at this ability to state things so matter-of-factly.  When I say it like this, I do acknowledge that I have been grieving for quite some time, but really it is not grieving for Henry or who he is because he is 100 percent perfect. 

I'm grieving this loss of expectations.  Seriously, though, what an odd thing to grieve.  I remember in parenting classes, we were told that it is the presence of unreasonable expectations that can lead to anger with your children.  Well, I would argue the same could be said of grief.  

I think I started to realize that I'm at a new point when I brought Henry to school and into the bathroom to wash his hands before class.  In the bathroom were these adorable four years old talking about getting a scratch and showing each other their small scratches and wounds.

At that moment, I realized Henry would never do any of this as a four year old.  As a four year old, he will never have a conversation about getting hurt with another child his age.  Before I would have felt this sadness like a great weight and mulled over the possibilities of reaching something, anything normal.

The miraculous part of the last few weeks is I leave this exchange and realize it might never happen for Henry, but I also realize Henry is creating our new normal and there is so much to marvel in his progress.

Henry went down the steps completely by himself last week.  He is starting to talk more and more and in ways that his therapists and others not completely familiar with him are beginning to understand.  I can give him complex instructions and he gets it.  He gets what we are saying.  There are bright spots and before it only would provide scattered light in the darkness.  Now it is the light and enough for me to see and understand.

Of course, we continue to struggle as well.  Although Henry had a very thorough evaluation for a speech generating device last week, our insurance declined to pay for it.  We plan to borrow various devices through the school district and then possibly have Children's request the device at the end of the summer.  We are still applying for the grant through United Healthcare, but thankfully we got into Developmental Pathways this month to apply for medicaid with a waiver.  When I set up the appointment, I was told that Henry, before the age of five, only needs to have a suspected developmental disability.  After the age of five, they need to determine he has an IQ of 70 or less.   That crushed me a bit, this statement and acknowledgement that this sort of determination is not so far away.

But here it is, the part that is the best, we can escape it all.  The last few weeks have been vacation with my in-laws and my husband and my parents.  Sometimes escape is the exactly what is needed.

hanging lake- Glenwood springs