An Open Letter to Professionals

Below is an incredible letter written by Pia from her blog The Crack and The Light.  (Feel free to skip down to it if you're not up for my teary drivel).  It brought me to tears - several times actually. 

Sometimes, I find it pretty hard to find words that adequately express what I'm thinking or feeling.  Sometimes I just type to get it out and then hit "delete" lest I publish it and be judged, God forbid.  This is something that deserves to be spread around.  This is something every teacher, therapist, doctor, nurse, friend, or family member who has contact with parents of special needs children needs to read and reread again and again.  I don't ever expect anyone to understand what we go through or what our kids go through.  I don't expect anyone to even care.  I do, however, expect people to respect me and respect my feelings because I respect others.  I am a mother to two (and someday, hopefully three) children with special needs.  Their needs are of varying degrees.  Some of their needs are obvious, some are so very hidden.  My heart breaks....every....single....day.  It breaks not because they make me sad or because I don't love them or because I wish they were "normal."  It breaks because they hurt - physically and emotionally; they struggle; they put up with countless doctors, nurses and therapists; they will go through life being labelled, misunderstood, and underappreciated.  My heart breaks because I wish others could see the beauty and inspiration in my children that I see.

I think a big part of the reason this letter reached me on such a deep level is because it was written for me - a mom of kids with special needs.  It focuses on me and me is something I've kind of forgotten about.  Oh, I think about it now and again - I see the lines around my eyes and the grey hair on my head.  I feel the aches in my neck and back.  I think about it almost daily when someone says "you look frazzled" or " you sure look tired lately."  This letter touched me because it made me look inside myself and acknowledge that I do, indeed, feel all of the things she talks about.  It reminds me that while I do my best to hold it all together, inside, sometimes, I am falling apart and sometimes, that's okay.

An Open Letter to Professionals

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.