Yesterday, I made this post about the new Down syndrome blood test available to expectant moms. I'm not going to lie, I have been avoiding this topic. I have read a lot about it the past few months, and frankly it isn't easy for me to think about. When reading articles in the news about the subject, I tend to read the comments left by readers as well, which in turn ends up upsetting me even further. As I have wrote before, I tend to sit on my little cloud of optimism about how far the acceptance of people with Down syndrome has come, but when I read about "the eradication Down syndrome" with this blood test it makes my stomach turn. Frankly, you don't eradicate something by terminating pregnancies.
We did not have a prenatal diagnosis with Charlotte. We found out 24 hours after she was born about the Down syndrome, and 5 days later about her heart defect. During my pregnancy I declined the quad screen, a test designed to give your risks of certain types of chromosomal issues. I didn't have this test for either of my other pregnancies, and felt no need to for this one as well. My reasoning? The quad screen has very high false positive rates and does not give definite answers. I also felt at age 29, my risk was minimal, and if our child had a chromosomal issue, it wouldn't make a difference, and we would chose to keep the baby regardless.
The days following Charlotte's birth, to put it bluntly, sucked. If I could go back and "re-do" those days, I would take away all the sadness and grief, and only feel joy as I held my newborn baby. However, as most everyone who has received a Down syndrome diagnosis will tell you, one needs time to grieve. I have yet to meet a pregnant woman who says "I hope I have a child with Down syndrome!" It was a hard diagnosis to swallow, but I often reminded myself it could have been worse.
After the grief, there is joy. Joy like I have never experienced before. Everyday when I walk into Charlotte's room to get her up from her nap, I am overcome with feelings unlike anything I have experienced before. When I sit back and watch Charlotte play with her brother or sister, there is more joy. Since Charlotte's birth, I feel like I have become a better mother. I am more patient, I take more time to play with my children or read them an extra book, even when I should be catching up on laundry. Why the change? Because I am more aware of what I have and how grateful I am for it.
I realize this post has taken an odd path, but my hope is, that I will touch someone, even just one person facing a T21 prenatal diagnosis. My wish is for them to know, it will be okay. Your child may face extra challenges, but I truly believe that when raising a child with special needs the lows may be lower, but the highs are higher...much higher.
If I could go back, would I want to know prenatally that Charlotte had Down syndrome? At this point, no. Yes, those first few days after her birth wouldn't have sucked so bad, but had I known, I probably would have been crazy with worry during my pregnancy. Everything happens for a reason, and it is only afterwards that we sometimes know why.
*For further blog reading on this subject, please visit this post on the blog, "Pudge and Biggs." She tells it like it is, and I whole heartily agree with what she writes.
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