Choices...

I'm not even sure how to begin about how overwhelming this week was! Not only did we find out that Carter got accepted at West Gate school, but we got to tour it too. At the meeting to find out which school he was being placed in and going over the IEP plan for his school year, we sat and listened to 13 people discuss their findings during their assessment. This was devastating and overwhelming for my husband and I. On a daily basis, we only deal with what is in front of us; we do not dwell on the past or the entire picture as a whole. We look at our son in all of his perfection and we only see a little boy who is happy, loved and smart. But in this meeting, we heard his life's story in the words of professionals. All of our realities were painted into a picture so blinding, that my eyes hurt. Half way through, I had to shut down. I watched my husband playing with Carter on the floor with one of his therapists and blocked out the words around me. On my son's face was nothing but smiles and happiness. He was unaffected by the terms being used and he didn't care what disabilities they categorized him into. I had to grab that happiness and hold on tight in order to make it through. I only allowed myself to answer the yes and no questions that were required of me. I had to put up a wall to protect my heart. As if this wasn't hard enough, we went yesterday to tour his classroom and school. I had in my mind what I imagined this would be like and I prepared myself for it to be difficult. But no amount of preparation could have equipped me for what I was about to experience. No number of days, weeks or years ever make this journey easier. Coping skills get stronger, but they do not get easier. So as I walked into his classroom, I noticed first that they had lots of sensory toys and activities. On the far wall, was a small fish tank with little fish (one of Carter's favorites) and there were 3 aids and a teacher in the room. Most of the children were eating lunch and a few were sleeping on soft mats. All such wonderful things. But in the midst of all these things I was so happy to see, were also very real and very startling things. Half of the children had severe physical and mental challenges. In this classroom were children who had similiar disabilities as my child, but seeing them with a bystanders perspective gave me a much clearer view on my son's needs. This is not what I wanted for my son; this was not part of the plan I had always imagined for him. I am surprised my heart is not physically broken and irreparable at this point but somehow, some way, it keeps beating and recovering. I managed to keep it together even though my thoughts were in shambles at my feet. I'm not sure how I made it through the rest of the tour as my heart screamed in pain. This is the school I wanted for my son for almost a year; I knew full well what it would mean. But seeing it for the first time, threw my system into shock. I am left with many questions that I didn't think I would have. I wonder if Carter will always be in a special needs school. I wonder if he will always need equipment to help him stand or walk. I wonder if he will ever call out for me using "momma" or if he will ever tell me what he thinks about his life. Will he always be in diapers and need around the clock care. Who will take care of him when I can't someday. Many of these things, I know I shouldn't even think about at this early in the game...but I can't block them out and pretend it won't be something we face someday. This is real, this is what it is. I spent a lot of the afternoon in tears, even though it was my birthday. I couldn't talk about the tour without bursting into tears. Trying to describe that dark place in my fears to others, kept resulting in inadequate descriptions and words. There is no clear way to explain what I felt like or how I feel now. I have 9 days to digest this pain and rebuild it into ways I can handle. I have no choice but to give this new challenge a shot. I have to put aside my own pain and fears. I know that January 23rd will entail lots of motrin and tears. How I will get through this, I'm not quite sure. But just like the decisions and experiences over the last 3 years, I find ways to do it. I'm a mom of a special needs child...it's just what we have to do. There was no choices made in the way my child came into this world and there are no real choices in making things change. I only have once choice and that is to grow a thicker skin and run through the fire yet again. The blisters and damage will heal; I will heal.

Harder than I thought...

This morning was Carter's evaluation for school. We were in a small room with 3 therapists, a nurse, and psychiatrist. I didn't expect to be as uneasy and sad watching this happen, especially since I already expected it to be like this. But to see a new team of faces gathered around my child with questioning eyes and attempts to get appropriate responses to simple commands and getting struggles in return, was heartbreaking. I watched in anguish as he bit his hands so hard that he left marks and he poked his eyes every chance he got. I clutched my coffee in my hands trying to find some small morsel of comfort in it's warmth and familiarity. Trying to answer the numerous questions that I have been asked so many times before was different this time. I tried to answer the questions as best I could in hopes that I didn't sound unprepared or inadequate. I'm sure I was overly worried, but as a mom to a special needs child, that feeling of inadequacy is common...as common as putting on accessories for a special occasion and hoping it will match and not clash in the most obnoxious way. I hoped that all of my observations and motherly instincts over the last 3 years were enough for my child to start school with some sort of base to stand on. I don't have the reassurance that my child can recite the alphabet or count to some substantial number that will impress his teachers. I do not have the satisfaction that I taught him the correct colors and manners. I have to hope that my suggestions will carry across clearly to the people who will care for him. I have to hope that Carter will warm up to his new surroundings enough to attend to small tasks or therapies. I don't get to tour schools and choose for myself which one I want him to go to. My list of to-do's to prepare him for his first day consist of calling specialists to ask if they will draw up a G-tube care plan and seizure protocol. I have to get medication permission from the pediatrician so the school can administer his afternoon medicine. I have to get a medical explanation that states in detail why Carter doesn't have up-to-date vaccines.
So as I sat there and watched my son being assessed, I grasped onto every ounce of my strength I could and tried to push back my tears. It was when all of the therapists and nurse left and the school representative asked me if I was okay and whether it was overwhelming to have so many people asking questions and assessing Carter, that I broke into tears and said with all honesty, "yes, it was very hard and scary...It's very hard to send my baby to school". She gave me the most understanding look and told me that I was a great mother. It was that moment with the best words I could have heard that peace found it's way to my heart. Now it's off to contact doctors and start gathering all the information they need.

Full force ahead...

It's been 6 weeks of fun and food! We welcomed our new baby girl into the world, celebrated Thanksgiving, Christmas and New years and now real life kicks back into full force! Back to weekly therapies for Carter, appointments and the big transition appointments to start pre-k. It's crazy to me how fast the last 6 months has gone...I remember thinking last summer how much time we had to prepare for Lily and school to begin. It felt like an eternity away. Now here we are...tomorrow is the evaluation appointment with the school district therapists, nurse and psychiatrist. One week from today, we will find out which school the county has chosen for our son. For almost a year, my husband and I have hoped with all of our being that he will get placed in to West Gate. It's a school strictly for special needs children and there are 2 nurses on staff at all times, there is a million dollar snooze land (sensory rooms) and we've been told by so many people that it's such an amazing school. Only 17 more days to prepare. Tears aren't too far off each time I think about putting him on the school bus and watching it pull away with my baby inside. I wonder what he will be thinking about as he looks around and only sees strangers and big seats that are unfamiliar. I wonder if he will be afraid or curious?! Of course, I will be trailing close behind the bus his first day or two to see his route and to experience all of his firsts in school. Carter may not have met any of his milestones so far, but starting school and becoming a big brother are HUGE milestones in our home!

After Carter's first day of school, his 3rd birthday celebrations will begin! We will be having his first birthday party surrounded by his therapists and friends! We will have decorations, cake and food! I am so excited to celebrate with all of these people that we love so much and for Carter to see and feel all the love he has around him!

I have a great feeling about 2012 for Carter! I have a feeling we will see big changes in a good way!