Some days I look at her and I can’t believe how lucky I am.
Not everyone has an Oli.
Some days I look at her and I can’t believe how lucky she is.
She’s not sick. She’s not in the hospital. She’s not hooked up to any machines. She’s alive.
And some days just the fact that those are my blessings, makes my stomach turn.
It still feels like a rollar coaster ride some days. A lot of days. But not as many as before.
I can look at her now and most of the time not compare her to her friends. To her classmates. To the kids who were supposed to be her classmates.
Every once in a while I’ll get a glimpse of the little girl who I thought she would become.
Sometimes it’s in a photograph. Sometimes it’s in a dream.
Every time it makes me lose my breath.
Like someone just punched me in the stomach and I can’t quite get enough air into my body.
I saw a picture once of Oli portrayed in a book as a ballarina. She was smiling at the camera; looking at the camera. She was beautiful in that picture. Such a perfect little seven year old girl, dressed up in a tutu, posing for a picture. I can’t look at that page in the book. That’s not my Oli and if I start imagining and pretending it is… I will grieve for the loss of that little girl all over again.
I don’t want to lose that little girl all over again.
And some days… I just do.
Some months she will progress so much. She will speak a few words, take a few steps, stop stimming so much… and I will begin to believe that she will make it. That she will become the little girl that grazes my dreams every once in a while.
But then she’ll stop.
She always stops.
And then she’ll go backwards.
And then I lie awake at night and wonder what I did. What did I do? Did I not praise her enough? Did I not do enough at home? Was there some therapy that I should have looked into? What would have made the difference this time? What could I have done to propel her forward? To keep her where she was and not keep falling behind.
I think about that for a few days and then I remember.
This is Oli
This is who she is.
At some point after she was born I stopped agreeing with other parents who told me that she was going to be okay. And by “okay” they meant that she would catch up to her peers.
I think that maybe they believed it.
I probably believed it too.
Or maybe we were all just trying to make me feel better.
Now, no one tells me that she will catch up. No one tells me that she will be okay. At seven years old, no one believes it anymore I guess.
I miss how it was before.
Tonight I sit at my computer trying to figure out how I’m going to schedule ALL of her therapy sessions that she gets now.
I start to question just what it is that I’m doing?
What am I doing?
Are these helping her? Are they helping us?
What are we doing?
I fight and I fight and I fight.
I research different therapies and teaching techniques. I go to ARD’s at school and fight for more services.
I fight for her home therapy sessions.
Her home PT cut her therapy in half.
And I fought.
And I lost.
I lost that one. She doesn’t get as much home physical therapy as she used to and I’m pissed.
Don’t they KNOW how much she needs it?! Don’t they KNOW that she is almost walking independently? Don’t they KNOW?!
Yes. They probably do know. They probably know what I am reluctant to admit.
That all of these things are just not helping like they used to.
That Oli has come as far as she will come right now.
So what do I do?
Do I give up? Do I cut back?
Do I sit and hold and hug and kiss my daughter more? Do I do all of the things that normal families do with their children if they’re not in hours and hours of therapy sessions?
How is this affecting my other children?
What does Oli’s schedule do to them?
They never complain. At 9 and 4 years old, her brother and sister have not once, ever complained.
If you ask my son if he ever gets jealous of Oli’s attention, he just looks at you like you’re speaking another language.
Trust me, I’ve had this conversation with him.
“What do you mean mom? Oli needs help.”
But as their mother, at some point, I have to stop and consider us as a whole family supporting each other.
Not all of us supporting Oli.
But how can I look at this amazing little girl and not offer up the whole world for her?
How can I look at her and see just how far she really has come and not want to do more?
How can I get access to all of these wonderful therapies and say no?
What if it helps?
What if it works this time?
What if she begins to walk and talk?
What if I stop and she never does? Was it because we didn’t do everything?
I’m not sure, at this point, that I can live with the thought of not doing everything.
So…If you ask me what it feels like to be a special needs parent I will tell you this,
It feels like you are reading an amazing story with excitement and joy and suspense and so much love. You get to the last chapter because you just know that it is going to be the best ending ever….
And the entire last chapter is missing.
It’s just not there.
You have so many questions. Did she speak? Did she walk? Did she go to the prom? Did she have a best friend? Did she ever play with her brother and sister or learn to ski or go fishing or read a book or even learn the alphabet?
You don’t know.
You’ll never, ever know.
Until one day you stumble upon an old, threadbare copy of that same book sitting on the back shelf of some dusty, second hand book store.
You pay $1 for the copy and rush home to read that final chapter, only to realize…
That the ending never really mattered all that much.
It was the journey to the end that is what made the story.
So that’s how we live here.
We live the journey and not the destination.
I live my life one page at a time.
I live my life knowing that the last chapter is missing.
And I try to make the best of the page that I’m on.