The official report just came back from the genetics meeting in September. I knew what it would say, because hey, I was there, but it's still difficult to read. Yes, Nikolai has Williams, but his current level of functioning is much lower than is typically present in Williams. We're going to look for this. We're going to look for that. Significant intellectual disability. Specific phobia for loud noises, doctors, and medical facilities. Extreme anxiety. Lordosis, awkward gait, mild facial asymmetry, etc etc etc.
These are the words that I understand. There are many more that I need to look up. So Niko has Williams, but even with Williams, something...extra...is wrong. We knew this, but it doesn't make it any easier.
Then I gave Nina her seizure medication, and she said, "Thank you, Mama." For some reason it made me laugh.
Gah! I just throw my hands in the air today! I surrender. I have a fantastic husband and two spectacular kids. It's almost Halloween. Sure, I'm grossly over scheduled, behind in housework, and being forced to look at the black and white of my son's syndrome overwhelms me. But it shouldn't. He isn't his syndrome. Nina isn't her medication. Life is fantastic and glorious, and sometimes I get so tunnel-visioned that I miss it. Not today, though. :)
Have a good one, everybody.
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A chronicle of discovering and coming to terms with my baby being diagnosed with Williams Syndrome.
6 comments:
I LOVE your attitude. You've reached this level of enlightenment that the rest of us need to hurry and catch up with. Your kids are very blessed to have you both as parents!
I can just imagine how hard it must be to get that report. I just went to a evaluation for Alicia, who is severely speech impaired. It wasn't like I didn't know -- I can hear her -- but it's so hard to see it all in black and white. And Jonathan isn't talking much at all. I get so overwelmed these days trying to keep up with the kids and help them, and it's nothing compared to what you deal with. I hope that the doctors can figure out what else is going on with Nikko and that it will help. He and Nina are both so lucky to have you!!
You go girl.
I'm hoping along with Laura...I know it was hard on a level I can't comprehend, for you to have to see him itemized on a piece of paper. I hope it will at least lead to more insight as to what will help the most. Love to all of your from NC...
Thank you for saying that because sometimes it is nice to hear someone else who understands that just because all of this stuff is going wrong, that doesn't mean that life is not still great :)
Love you!
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