I Need To Write...

I ain't gonna cry; I don't wanna scream
But I go so much left unsaid inside of me...
I Want To Be Loved -- Bon Jovi

Yep, sometimes I think I have so much left unsaid that I will literally explode...
One day I will run out of people to listen. In the mean time, I am grateful for the dear and trusted friends who converse, listen and share. Without them, I would indeed be lost.

I have been called many things in my life - shy, quiet, reserved, soft-spoken - these never made the list of descriptive words associated with my name in the yearbook. And maybe always speaking your mind - often before your mind knows you have actually spoken - is not a good thing.

In any event, my mind is going 90 mph. too much going on this week - personally.
Thrilled today is mostly over - parties at every school my offspring attend. I am in trouble because I cannot attend both parties. I'm good - but not that good. In a most gracious manner, my babysitter offered to attend DD #2's party since I was hosting DD #1's class party. That seemed to work. And I am relieved. Teacher happies are done and sent. Crafts made. Bags decorated. Candy wrapped and given out. Yes, I am one of those kinds of Moms. My Mom was one of those Moms and I too, am one of those over-achieving, boy-scout, gotta-do-it-all-for-my-kids Moms.

Which leads me to my greatest angst this week (in life). My oldest daughter is described as a Special Needs child. She has - what is described on paper as - a Profound and Severe Speech Delay. And no matter how many times you hear it or how many times you read it - each time you see the words Severe and Profound applied to YOUR child - with the word Delay, it devours part of your soul. Medical Diagnosis - Apraxia. Oral Motor Planning Disorder.
It boils down to the muscles in her mouth not communicating with her brain properly.

So what's the big deal? It's not like a lisp or a stutter or mispronouncing a few consonants or vowels. It's a huge deal. Have you ever met someone that speaks your native tongue but has a dialect so different from your own, you only catch every third or fourth word? That's how it is for strangers when they meet my six, almost seven, year old daughter. She sounds like a deaf child learning to speak - like someone that has never heard the spoken word. I understanding about 50% to 75% of what she says - depending on the circumstances and the vocabulary involved. And when she hits one of those 'spurts' where her vocabulary really grows, I understand even less.

I have done my own research. Spoken to the experts. Spoken with them again. They all say the same thing - SHE WILL BE FINE. And I cling to that prognosis with every fiber of my being. But then they immediately follow up with - It will take a long time. A very long time. It will not happen overnight. It will not be easy. She will have to work very hard. She requires a communication immersed education.

She was two when we first found out there was an issue with her speech. The specialist came and went. They confirmed our suspicions. And I naively believed that we'd do speech therapy a couple times a week and she'd be up to speed by first grade. She would have started first grade this year. A milestone missed. She is in a phenomenal program at an internationally recognized school - exactly where she needs to be. And I am thankful that one of two programs in the US is here in our big city. But it's not the first grade at the public school right down the road from our home. They call her program Early Intervention. For the rest of her life - she'll never be able to say - "When I was in first grade..." Silly, I know...

A girlfriend of mine once asked me a very personal question. I have known and loved this friend since we were 4 years old or such a question might have been inappropriate. She asked me how I accepted it - how I dealt with it - having a child with special needs. For once, I actually stopped and thought before I answered.

I cried with this dear friend when her first baby, a beautiful girl, was still born. She knows pain personally . She is intimately acquainted with heartbreak - yet she asks how I accept this challenge with my living, breathing daughter. And for a minute, I didn't know what to say. Do I tell her that every time we have a teacher meeting, or get her test results - from whatever the latest battery of test are - I cry. To this very day, I cry. I have a meeting this Thursday with her teachers, and I will cry. There has never ever been any progress shown in her development on paper. Never. You see, for all the painstaking progress she makes, it is negated on paper because every day - she is a day older. Test scores and results are contingent on chronological age.

So I thought some more and finally told my friend that I wasn't sure how or if I was dealing with it or accepting it. But if I was - it was bit by bit, day by day, minute by minute.

So to survive this - I move, quickly and constantly through life. I stay busy. I mother. I work. I don't stop to think about it. But there are moments when it consumes me. Today - this week - I am consumed.