Death Hangs Around

Will is slowly recovering from his latest bout of pneumonia.  For those who don't know, my 7-year old son, William, has a terminal brain disorder called lissencephaly.  He is in a wheelchair.  He does not walk or talk and is fed via a stomach tube.  He was diagnosed at 4 months of age when he had a grand mal seizure.  The general life span for this disorder is about two years.  So Will, at 7, is like an old man. This is a progressive disorder so the longer they live, the harder it gets - on them and on us.

Will has had 6 hospitalizations since last December.  (Which is actually much less than many of these kids so in that respect we are lucky.)  Seizure control and keeping pneumonia at bay are our two biggest tasks. Right now Will is slowly recovering from pneumonia and his seizures are fairly well controlled so in my world, life is fabulous.  He's very happy and is really the cutest kid you've ever seen.

Every week we lose some of the special kids in our "anycephaly" world.  We use that term to include all the children in our network.  There are many brain disorders like lissencephaly that are similar, yet just a little different.  So I will toss the word "anycephaly" around often. One of the kids we lost this week was actually a young woman.  I'm not sure how old she was but she was in her early 20s.  A dinosaur in the anycephaly world. She left this world and left her loved ones sitting by her side and became a true angel.  This is the world I live in. Moderating a group of 468 parents worldwide forces me to get to know these kids and their parents. To create bonds.  To grieve when their kids are sick.  To rejoice when they do something like hold a spoon or grab for a toy.

The cases are all so similar that you begin to picture your child's face every time one of them passes away.  You begin to picture your child in one of those little caskets and wonder when it will be your turn. It's no way to live. It ages you.  It creates problems within your marriage.  It creates problems with your other children. It makes it difficult to get a job and keep a job.  It ruins you financially.  Even though we've always had good insurance (Blue Cross and Priority Health) we are still over $10,000 in debt from things that were only partially covered, not covered at all, co-pays, and incidental expenses that come along with the many hospital stays. It's hard to get a break and the rate of caregiver burnout is off the charts. Some states have nursing care.  In Michigan it's almost impossible to get nursing care for your child.  Todd and I have managed to do it all on our own for 7 years.

Why am I writing all of this?  Here's the thing.  I've really been wanting to get this blog off the ground. I've always been very involved in current events and politics.  I've worked on campaigns.  I've testified for appropriations hearings with regards to health care reform.  I've seen myself evolve from a conservative card carrying Republican to a much more moderate yet left leaning Democrat.  I read other blogs and articles and I have opinions and want to be involved more than ever.  But I.Just.Can't.  None of it seems to matter like it used to.  Not when I spend my days trying to keep my kid alive.  I am so very different than I was 7 years ago (before Will's diagnosis).  I see the sit-ins that are going on around our country and the strife and economic problems we are facing in the United States and I want to yell and scream and protest and run for office to fix it all.  But I scream and nothing comes out. I try to form an argument and it comes out as word vomit. I've lost the edge that I know I once had. I feel as if I've been watered down to "just a mom". And I kind of like it.

Many people have forgot about what really matters. They are driven by things that are much more complicated and unimportant than just living life and taking care of each other.  They argue about silly things.  There is a general lack of empathy running rampant in our world today.  Will's lissencephaly gave me back my empathy.  My ability to feel how others may be feeling has become more fine tuned.  I sometimes wonder what I would be like had Will not been born with lissencephaly. Although I hate to watch Will suffer, I like the person I've become. Typing that out loud feels weird. But it's the truth.  I'm peaceful and happy even though I am worried and stressed.

Because I've figured out what really matters.