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Saturday, July 10, 2010

SURVIVOR NICU: OUTWIT, OUTPLAY, OUTLAST..18 weeks actual, 6 weeks adjusted....

So I have been so enjoying my son lately. He is now a month and a half old, and because my mom has been here, I have been able to go up to the NICU and spend oodles of time with him. Because of this I have also been able to notice NORMAL things. That is one thing about having a premature baby, you sometimes get so caught up in the ABNORMAL things about your babies prematurity that you forget that he is first and foremost, a baby. When I taught my students who had different abilities, we learned something called "people first" language. In other words, you define the person before the "disability". For instance, you don't call someone who has Down syndrome a Downs baby, you say, a baby with Down syndrome. But most people including myself refer to a baby who was born prematurely as a "Preemie" and with that comes a ton of connotations, images, and assumptions of just what that means.

This week I was able to notice so many wonderful "non-preemie" things in Thurston. I have brought in a ton of toys for him and I jingle them on one side of him and he turns his head toward the sound, looks at the object and then tracks it as I move it alllllllllll the way over to the other side. So not only is he hearing, but he is able to visually track with his eyes, and he is also able to move his head from one side to the other. I was so tickled that I laughed out loud and said "oh look at you, you are tracking, what a great milestone you have hit". I then looked up to see a nurse looking at me. She didn't have to say a word, it was all in her face. I looked at her and said , "oh but I know that he will still have issues". I cant even believe it. I cant believe that I wasn't even able to enjoy that little moment, that very normal moment with my son and retain that little ounce of hope in my heart that he could very well be......dare I say it......NORMAL.

You see since day one, everyone has been convinced that my son will have cerebral palsy, I will say it out loud since some people will only say it with their looks and obscure monikers they have come up with. They have called it by many other names like "challenges" or "issues" or "he will need some help" or I love it when people say to me "It is great that you have special education experience" (thats my favorite one)etc. Even though his brain scans so far have been clear, they still fully believe deep down in their hearts that my son will be "challenged". Its almost like a self-fulfilling prophecy and I fear that if he stays in the NICU much longer, they will "will" him right into submission and downright cause him to have something "wrong" with him.

They have had me convinced as well. They convinced me that he wasn't going to make it outside of my womb, they convinced me that he would die within the first day of life, they convinced me he would die after he coded on the third, they convinced me he was going to die after he was 4 weeks old and had very little good lung tissue left, they convinced me that they were positive they would find some type of brain damage after his first, second, third etc. brain scans, they convinced me that he had a high probability of being blind and deaf, could be wheelchair bound, cognitively name it they have given me every worst case scenario they could vomit at you, and gave it to me with so much conviction that I am surprised their eyes haven't popped out of their heads by now!!!

Guess what my son has done to all of their crystal ball predictions......He has outwitted, outlasted, and outplayed all of them. I am tired of trying to appease them, it should quite frankly be the other way around, my son and I are the customers after all. I am entitled to enjoy the fact that my son looks and acts NORMAL, that he clasps his hands together, that he can prop himself up with his forearms, lift his head up and look in the mirror at his handsome self, that he eye gazes right at ya, that he tracks and moves his head from side to side, that he seems for all intensive purposes, like a normal newborn, not like a non-people first language "Preemie". I am tired of tempering all of this excitement with an "oh but don't worry everybody, I know he will have some, "issues" "challenges" "problems" "delays" etc. Why cant I believe that in the end, everything will be OK. Isn't that the definition of hope. My son IS the ultimate survivor and he deserves the million dollar prize.....a mother who never gives up on him nor on his chance at having a "normal" life.


  1. I always thought of him as thirsty( nickname for him...donut!)..dont' think CP ever came to mind nor preemie. I guess you have heard that a lot in the environment you have sustained with him these last few months(month and a half?..? typo ? )
    he's my nephew, your & Chad's son..violin's brO ;) grandson, et al and so on etc..never stopped to think about labeling him other than nephew with a GI name ;). BTW>>>you been doing jumping jacks lately? heard he is above 6 lbs and climbing ..he must be asking for a steady diet of milkshakes. Love ya ! L

  2. My sweet read this to me tonight after you wrote it, and you were trying not to's ok to cry..member, you told V that? Our boy is going to be a happy little boy because you and Daddy and big Sissy and Grandma and Papaw and Ama and all the aunts and uncles and cousins love him sooo much...and because he has the most fantastic parents ever. xxoo

  3. Outwitting, outplaying, and outlasting runs in the family ;-) Can't wait to meet my grandnephew.

    Love to all. UM.