Thursday, October 22, 2009

(Almost) 4 years ago...

In 3 weeks my little boys will turn FOUR years old... FOUR!! Where did the time go??
Last night, I was dressing my little John and I could feel every bone in his body!!
He is on the losing slope again and I am getting desperate for him to eat...anything!! Just as long as he eats and the dark circles are gone from his eyes and he has his energy back...

I realized that I have been asking God for help in every turn since the boys were born, or even before.
I prayed for years month in month out, that THIS time, THIS therapy/pill/surgery will work and I will get pregnant... When I got pregnant with them and lost their triplet, I remember thinking "I am still pregnant though". I guess in the back of my mind, I was worried something might go wrong.
I waited at the edge of my seat for magic week 24, the cusp of viability and was amazed to make it to week 36.
But since hindsight is 20/20, I now realize that that drawn faces, the long and very frequent ultrasounds and the collective sigh of relief that filled the operating room when John came out of me, screaming, were all signs that there was in fact something very wrong my with my baby, even before he was born...

I really thought that since he was born only 4 weeks premature (and was a further 4 weeks behind in development at birth so the size and developmental age of a 32 weeker), he would be OK. I mean, 36 weeks, pretty good huh? Other babies never see the door to the NICU at this age (like his twin who was a whooping 6lbs 3oz 19" at birth).
Then why is my son struggling so at almost 4 years of age?
Aren't preemies supposedly caught up by age 2?

Thoughts like these flood my mind and even though I am immensely grateful for my little boys, the havoc that John's diagnosis and Special Needs have caused, is immense.
I am so changed since I've had them, but the big shocker, the core shaker, was that visit to the neurologist 2 years ago today... when my fears were confirmed. I came out the other side, stronger, better and more in love with them than ever... but the aftermath is still felt.
My husband and I, the love of my life, grew apart. Him, not able to control his anxiety, became abusive to me :(
My work suffered, and even though I feel I am turning around (my waiting times and quality of work have been improved in the last 6 months), it is still difficult some days to find the will, the desire and even the time to work.

In only 3 weeks, I will make two cakes (John wants Power Rangers and Cody, Transformers!), decorate the apartment and have our families and a couple of friends over ... the day before I will decorate their classroom and bake cupcakes (PR and Transformers of course) for their classmates.

Did I find raising twins difficult? In all honesty, no. Seriously, I didn't find it hard at all... I stuck to my schedule and my routines and things went very smooth.
What I do find hard is therapy, the worrying and seeing your child standing apart from all the others because his brain and body are not "normal" whatever this means...
And it drains me more and more each day that I can't make it right... I can't make him whole... there is a portion of his brain that is dead and will never function again.
And yet, this amazing little guy is all mine... and he is who he is because of his brain being like that and I love him exactly because his brain is like that... I just worry about him, that's all and I hate I have to put him through all this just for a chance in "normal".
Both boys are taking their therapies like troopers though. I think it is harder on me than it is on them.

Cody has progressed SO much with his Speech Therapy and Occupational therapy. On most days, you can't even tell he has ADHD and he has an amazing imagination!! He is still a momma's boy but he is a very stubborn little one as well.
He is still on the 99% for height and weight and everybody always thinks he is 6 years old! He can chat for hours this child!! He LOVES stories, absolutely LOVES stories and he makes up his own. I feed his imagination every chance I get :)
I don't mention Cody much, not because I love him any less but his "special needs" aren't really all that special. Yes he needs work in some areas but he is more or less "neurotypical" and some times people misunderstand and think I don't love Cody as much... this is so absurd, it's like telling me I can stop my heart from beating or me chosing a "favorite" finger above all others.
I love my boys equally but I also do take the opportunity to talk about John more, his daily life, his accomplishments and his difficulties in hopes of helping others in whose shoes I once was; new mom, scared, overwhelmed and with little support...

Thanks for reading my little "vent"... now back to your regular schedule all about dolls ;)


brightfamfarm said...

I have so been there! In fact it was about John's age....or just a little older, I had to pull Ethan out of therapy all together, for my own sanity....he had plateaued and was miserable and I couldn't take a moment more of him being tortured. Then I fought for the next 3 years for alternative therapies, just so he could return to a POSITIVE therapy experience. He just had his fifth Hippo Therapy session on Monday.....and he was on the horse BY HIM SELF!!!! For two times around the arena he was able to sit up, and this was HUGE, something we never dreamed he would ever be able to do. AND he LOVES therapy and is finally getting something out of it.

People with typical families (children) do not even comprehend what strain having a special needs child puts on a either makes you stronger, or tears you apart and the more common is the latter! I count my blessings everyday that I have been one of the lucky few who's relationship has survived having a severely disabled child.

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