There was an intern with Noah's therapist today. I thought maybe at first a new face would keep him interested. My first impression of the intern was really that of a guy that was on vacation to Colorado from Philadelphia while getting degree credits. I don't know that I really detected a huge amount of interest in making a difference in someone's life. Maybe I seen only the blissfulness of youth, so detached from the pain that lies beneath families like ours. Or maybe it stems from the intern feelings I acquired when Noah was in the NICU and they visited him like a sad soul ready to leave the planet and not worth anything other than witnessing what it like for a baby to die.
I've never liked the feeling of Noah being considered "textbook" or an "experiment." Our primary nurse in the NICU, always referred to Noah as "textbook." He has a neurological high pitched cry she would say. Although Chris and I never heard Noah cry not once until he was taken off the breathing machines and then it was so loud and powerful that we had no idea what she was talking about, yet she still insisted what we were hearing was a "defective cry." Noah has always cried just like any other baby. Noah will never get his gag reflex back she would say, because babies like Noah never do... and when he came home his gag reflex was very apparent as I gave him topomax medication.
It is so important for me to feel like they are treating the person and not the condition. Every individual is so different with a brain injury, you can't just lump them all together, it's not a one size fits all. Even therapy equipment is like that. The bumbo seat will never work for Noah. He has a Cushi Tush seat at home, that has a similar design to the bumbo, but has more support for him. And just like Noah loves the platform swing, I'm sure that it could make another child completely ill from the movement.
When Noah started to get upset today in therapy, a small little girl came into the room out of nowhere to inquire why he was so upset. I was distracted both by the little girl wanting to touch Noah, Noah being upset, and knowing that the only thing that was going to soothe him was a trip home for a nap and a bottle. His therapist tried to calm him by taking him into the large room where it was the busiest I had ever seen it. In my moment of soothing mommy mode, I had that feeling like it was like herding cattle, so many people all in one place, all trying to find a bit of space to get their hour of therapy in. That feeling of too much going on at one time to even know where to begin to place your attention.
His therapist agreed that we should find a better time for Noah's therapy but indicated that it could result in having to change therapists. At first I was hesitant to consider it because I am a creature of habit, but it might just very well be a change that Noah needs.
The only thing I really know for sure is how much I believe in Noah. Things are not going to come easy for him, but he has all the chance in the world at recovering. I know there are many that have their doubts about him, but I don't think any of that is written in stone yet. Everyday something new blossoms in Noah.
WHEN THE WORLD SAYS
GIVE UP, HOPE WHISPERS
TRY IT ONE MORE TIME
Love,
Stacy, Chris & Noah
Stacy, Chris & Noah