Wednesday, April 13, 2011

An Open Letter to All Professionals...

This week has been par for the course I'm on these days. I lost my textbook that I need for the last 3 weeks of my class. Kamden was in the ER Sunday (for issues he understandably doesn't want me to share with the world) and missed three days of school. Our fence fell down on two sides in the back due to the storm we had Sunday night. We've had a nurse out two days this week. And my phone has been ringing non-stop between the school district and our Dr.'s calling about last minute paper work they are required to send in to the school district.

Our ARD was moved up because the day it was tentatively scheduled for is the same day as our video EEG. Go figure. April 25-26 wouldn't work for the school since it is a TAKS testing day (in Texas that means the earth stops spinning while our poor babies are forced to complete a standardized test despite the anxiety that has been instilled on them so that "no child is left behind" and the teachers can have accountability :)) Fortunately this Friday works for everyone. So, Justin and I shall be there with bells on, one of our nursing agency's owners, and my mother in law (Kendall's Nonnie.) We will be writing her very first, shiny, new IEP!

In case you don't already know...I'm the type of person who doesn't have a problem speaking my mind. If I get passionate about something (i.e. politics!) you're going to hear my side of things. I've also been known to play devil's advocate...because admittedly, I think it's kind of fun. I've challenged the school board, city council, home owner's association. I'm stubborn and get set in my ways with pretty much everything. What I'm saying is, I'm not usually afraid of confrontation.

But I find myself this week in a place I've never been before. I'm nervous, wishy washy, and extremely emotional. I feel weak and unsure about the future for my sweet Kendall. Am I doing enough? Is she too young to go to school? Am I putting too much pressure on everyone? Will she be safe? Will she feel scared?

I found this letter a while back on I though it was worth sharing again today.

An Open Letter to all 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.


Candace said...

Amen, Jocalyn! I know it's gonna be really hard. Will be praying that it's as painless as possible for you guys and miss Kendall.

Ginger said...

I don't visit as often as I should but I just have to say she is sooo cute! All I want to do is jump through the screen and kiss those cheeks! Good luck!

Anonymous said...

I just got caught up on your last several posts. I hope today's meeting went well for you and Kendall's cadre.

I have a good feeling about it.