An Open Letter

I am sitting on my living room couch, curled up in a blanket on a rainy Tuesday afternoon, with chamomile tea in one hand and the computer in the other. I hear the soft static of Anna's monitor as she lays sleeping calmly but Gabe... Dear Gabe... Coughing in his bed, trying to rest.

Both kids were at the doctor's on Saturday morning, both for fever and coughs. Gabe... So strong... Anna... Not so much... Sunday ended with a rush to the E.R. after a coughing fit so tough it left her pale and exhausted, her oxygen levels down, we feared a second bout of pneumonia. 

Chest x-rays checked out. Blood work checked out. Another "common cold virus" that Anna just struggles to fight. Thick mucus is literally lodged in her throat and we hear it gargling over her airway. Most of the time we have to manually pull it out... I am strong in the moments, I get done what needs to be done. After, poor baby and I, both of us are exhausted. She, physically. Me, emotionally, spiritually. When Daddy is here, he is so tough. So... On top of it. But after, Anna sleeps. I am agitated, upset. Need to sleep. Daddy... He is quiet. 

I opened this up in my e-mail today, it was posted on a Rett forum and I cried. After a few tough weeks with doctors, therapists, and questioning if I am overbearing, overdramatic, over-bitchy and just one huge pain the ass, this letter arrives in my e-mail. And it is perfect. 

An Open Letter to Special Needs Professionals

By: Pia Prenevost
(www.thecrackandthelight.com)

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ...
or an angry parent ...
or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ...
or that I have all the experience in the world because I have done this before ...
or that I know the rules ... or that I don’t know the rules and that is for the best...
You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later.
It doesn’t matter where in the “grief cycle” I might be.
It doesn’t matter if the wounds are healed, or healing, or fresh and new.
This heart is bruised. Slightly broken. Different than it once was and will ever be again.
And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that.
But we are fighting a fight we never planned to fight, and it doesn’t end.
We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday.
We are fighting without knowing how to fight it, and we depend so much on you to help us.
We have been disappointed, by you or others like you.
And we are disappointed in ourselves.

We are your harshest critics. We are our own harshest critics too.

We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you.

So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.