Tuesday, September 4, 2012

World CP Day

Today is World CP Day.  Ellen, over at Love That Max, wrote a great post about what CP is, and what CP isn't.

The thing is, I do see so much beauty - every single day - in this life.  Our life that has been touched by CP.  Certainly not by our choosing, but it has been, and there is more beauty in this life than I can even put into words.  I feel blessed beyond measure to have been entrusted with Sammie B as my daughter.  Blessed to be hers. 

But tonight, I can't help it.  I'm just plain angry at at CP.  I'm angry that because of CP, my girl was the only little girl in the room at her back-to-school night who wasn't running around the classroom.  I'm angry because I know if she could run, she would have been.  Because I know she would have been having a blast (not that she wasn't, but still . . . )

I'm angry that I can't sleep tonight because all I can think about is what next school year will bring.  What our options are going to be, what choices we will need to make . . . angry that for her to be in a small, intimate classroom, we'll have to go with a special education class because the mainstream ones are huge and I know that she needs the extra support, even if cognitvely she can keep up with her peers -- she just learns better, performs better in small groups and one-on-one, and in our (bankrupt) school district, the rooms that can offer that are special education classes.  I don't want her to get lost in the mix.  But, I don't want her to be underestimated. I'm angry that I feel like Sammie B is so often underestimated, and I can't change that.  Angry because I know people will often underestimate her because of her physical disability.  Angry that some people will miss out on what a bright, capable little rockstar she is because they can't see past the physical.  

I'm angry that even the private schools we've toured -- the ones that supposedly cater to special needs kiddos -- are ill-equipped to deal with a child with a physical disability.  I just can't get over the fact that we have to feel like trailblazers in this world.  Trailblazers.  Even thought 1 out of every 268 children in the United States has CP.  Why are we trailblazing?

I'm angry that we still haven't gotten our house on the market, and lately, more than ever, as Sam scoots more ably around our home (we've had several "hey, where is Sam?" moments and we do NOT take those for granted, not even for a second) and as she gets a little better in her gait trainer, we KNOW we need to be in a single-level home.  I'm angry that this is not an easy process.  I'm angry that we are just one application in a pile of (probably) hundreds for a possible short sale, and I'm angry that the others consist of a lot of people that bought homes they couldn't afford and now want out.  I'm angry that we bought a home that we COULD afford, a home we love, but that we need out.  Angry.  I'm angry that the bank actually told our representative that to even be considered for a short sale, we have to fall behind on our mortgage.  Seriously?!  Angry that we want to do this the right way, and they are making it darn near impossible, in a most nonsensical way. 

I'm angry that with Sam, we know she has CP in the sense that CP is an umbrella term for a movement disorder, but that we don't know why she has it (e.g., there's no evidence of a birth injury or stroke or of any kind of brain injury), even after three years of tests.  I'm angry that I can't just know that she has CP, say "that's all," and move on, because we have to keep testing.  I'm angry that we are in a position that the thought "I wish we just knew it was just CP," is one I even have.  We have to keep testing in case there's something we are missing, something that can be treated.  I'm angry that I have the names of a bunch of genes swimming in my head because tomorrow, I'll take Sam for more blood work for tests to see if she has any mutations in those particular genes.  I'm angry that some of those mutations would mean some pretty scary disorders. 

I'm angry that she has to go through this.  I'm angry that I'm sitting here wishing that I just knew whether "World CP Day" is our "day" or if there's some other "Day" we belong to, and I'm angry that after three years, there's still so many questions.  I'm angry for her.  I'm angry for us.  Mostly, I'm just angry at "it," whatever it is.

In this journey, emotions ebb and flow.  And lately, I'm not angry often.  Mostly, I'm at peace.  But tonight, I'm angry. 

She is magic.  Perserverance.  Hard-work.  Giggles.  Love.  Hugs.  Kisses.  Joy.  Humor.  Magic.  She is amazing, just as she is.  There is no doubt about any of that.  Lately, she looks at me and says, "I luff you, mama," and my heart melts into a puddle on the floor and all feels right with our world.

We have been entrusted with her.  And for that, we are blessed.

But, tonight, I'm going to let myself be angry.  Tonight, it is okay that all I can think about is that if I could take CP away from her, I would.  In a heartbeat. 

Tonight, it is okay that all I really want to do is go crawl into her bed with her and lay there and cry for her and for us.



Erica said...

i have these days often momma-it is what makes us stronger-to let it out and share it and get on with it. you are both lucky to have each other!

Ellen said...

I get you. I have those days too. I think it's totally NORMAL. And helpful to have a blog to write about them! Hope today is a better day for you.

Anonymous said...

I'm angry FOR you, though I agree that Sammie couldn't be more magical if she tried. She is one awesome and spectacular little lady!

-Sky's mommy

schlennerfamilyof4 said...

Oh Allison I am angry too! It is not fair that our babies were chosen to have CP. I hope more than ever one day things will get easier for our children. It is okay to have these days and feel overwhelmed it is all apart of our process to heal. Thinking of you and your adorable Sammie B, whom I feel I know so intimately and never have met. Big hugs mama!!


BusyLizzyMom said...

I just found your blog. My daughter was a 25 weeker who is now 7 years old. She was diagnosed with ataxia and dsytonia as she has problems with balance and coordination. Reading your post on Sammies MRI brings back all we went through when our daughter was younger as her MRI shows cerebellum hypotrophy and no one seemed to have any answers for us.
My daughter did not walk independently until she was almost 3 and still is not running or jumping but she has come so far.
I remember going through what you are going through now and I promise you it gets better for Sammie and you.