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Wednesday, October 26, 2011

Down Syndrome, Maybe?

It's been hinted at more than once. Someone looks at my daughter and asks if she has Down Syndrome. The more it happens, the more I find myself starting to believe it. At first, it feels like they are just looking at her eyes and assuming because they drift up like they do that she has it. I'll admit, before we had an official diagnosis with MGS I thought it might have been Down Syndrome as well.  We brushed off all of her symptoms because we thought it was all related to her eyes, but as we approach her four month wellbaby visit with her pediatrician, I find myself bracing for the news that something else may be going on.

It started with a comment my mother made on Sunday. We skyped, as is our main way of communication so they can see and ooh and aah over their granddaughter. My mother didn't speak much for once. I attempted to get in contact with her for the rest of that day, and ended up touching bases with her the next morning. She knew why I was calling. I felt the same thing she saw. Something was off with Bug.  She was the first to say it.  Bug looked a little bit like a Downs baby.  She didn't have to say it, I knew I was thinking it.  It had been suggested before, but everyone brushed it off when they learned of her eye disorder, much like we all had, but it was different coming from my mother. Of course, she had mentioned it once before as well, but she also had decided it was all related to her eyes.

It has been mentioned before that Google is a dark friend to have. I found myself knee deep in symptoms of Down Syndrome yesterday. Do I see a Simian Crease, or are the three lines in her hand just bunched together? Is it sandal toe, or does she just have more control over her big toe than her small toes and separates it more easily from the rest of her toes?  Are her eyebrows similar to other children with Down Syndrome's eyebrows, or are they just her daddy's eyebrows?  The major scare on my mind is the fact her head is small. Her weight measured in the 75th percentile at her 2-month wellbaby visit, while her head was at the 26th percentile. I have heard they don't worry until it is in the 10th percentile or lower, but what about me? When should I as a mom worry?

So I get to send my husband in with a new concern to the pediatrician on Tuesday. He gets to hand over a list of things that have me worrying, and she'll be checked out. I'm scared to ask. I'm scared something is going to be wrong and she'll verify it. I know as far as getting her help is concerned, I need to know everything that is going on, but I also know I could be a lot happier pretending something isn't there.

I'm tired of being the strong mother who faces adversity and challenges with my daughter and meets them head on. I don't want to play this role anymore. I'm scared for my daughter.

Tuesday, October 11, 2011

L'Shana Tova (AKA In With the New Year, Out With the Old)

A message came up last week that made me stop and take note. The side scroller on Facebook had a comment I made last year on the day before Rosh Hashana, or the Jewish New Year (In case you did not know, I am Jewish).  I wrote "Hope the next year is better than this year". It also happened to be the day I got my big fat negative on a home pregnancy test, followed by the tell tale sign that there is no baby on the way that can not be mistake.   My husband and I had not been trying for a child, but we had thought there was a chance I might have been pregnant, and ended up getting rather excited over the prospect.  With the negative test I felt all my dreams of having a child disappear, and through that pain we made a decision that is definitely definable as life changing. We decided to actively try to conceive, and here I sit, a year later, watching the beginning of the year 5772 and recalling those feelings of anguish and despair alongside the feelings of elation that the new year brought when we made our decision and received the positive results the following month.   I stare at the status telling me of such heartache I felt last year, and part of me wants to laugh. Not because I had no idea what real heartache was, but because I had no idea what joy the next year would truly have in store for me.  I can dwell on the hardships that will come in this following year while we discover the full extent of my daughter's syndrome, or I can look forward to a year of enlightenment as she continues to show me how she can adapt to the world around her with her compromised vision. The ending of this year is no different than last, I limit myself to ten minutes of complete sadness every day, as well as hope at looking towards the new year as one of growth. The only thing that seems to have change is my perspective, and the realization of that is itself as life changing as a positive pregnancy test.

No hoping needed. This year is going to be certified bad ass.