Thursday, March 4, 2010
It Makes Me Smile
This is going to be a slightly different version of the "It Makes Me Smile" series...before I talked about a physical possession...today I want to talk about my nephew. Those of you who really know me, know that my nephew, Max, has a rare genetic disorder. And when I say rare, I mean there have only been just over 30 confirmed cases. He has a Carnitine-acylcarnitine translocase (CACT) deficiency. He also has epileptic seizures, staph, and well the poor baby is just sick all the damn time. Two days ago my sister in law and I were out and about with little Max, we were eating at On The Border and he had a seizure. That was my first time witnessing one of his seizures...and it scared the hell out of me. What really amazes me is that he is one of the happiest, most loving babies I've ever been around in my life. I can't imagine how scary and painful everything he's going through is...and as a toddler you know he can't possibly understand what's going on with his little body. But he's an inspiration to me...I mean he can still put a smile on that cute little face and cuddle and play and act "normal", kinda makes me feel bad for all the bitching and whining and complaining that I do. Maybe I should evalute my life and my attitude a little bit and be thankful that I'm healthy and try to keep a smile on my face to match his.
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4 comments:
i dont really know what to say to this. :)
my husbands niece has a rare genetic disorder as well. i believe its called trisomy 13. she is severly mentally impaired and has some physical abnormalities. they didnt expect her to live past a few years and shes now almost 10 i think.
i often wonder if there are support groups for parents of children with these types of rare health issues. its probably hard for them to make friends and find other people that truly get what they go through.
honestly i don't know what to say either. i most likely didn't do max's story justice.
i'm sure there are support groups. if not, there should be. according to the docs there's about a 73% that max won't make it past age 3...but maybe, like jay's niece, he'll defy the odds.
Oh this breaks my heart. I goggled this after I read your story. What a traumatic thing for your family as well as your nephew.
I'm sorry you have to go through this. But I'm glad you have Max in your life for however long - he sounds wonderful! Hugs to you all.
thanks for your kind words peggy...i really appreciate it. and i'm glad i have max in my life too...he truly is an amazing little guy! hugs back at ya :)
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