I'm finally joining the Blog Hop from The Bates Motel. Almost didn't make it in time, but here I am! The question she asked was, "What mysteries do you want to see unraveled for the future for your child with Down Syndrome?
My first thought after reading that sentence was, the mysteries of aging. Beth is 28, will be 29 in just a few months and her 'twilight years' as they've been called, make me nervous. When Beth was born people with Down Syndrome lived only to their 20's. Now though, they live to be 50 or 60 and if that's true, Beth is middle aged. So what does that mean, exactly?
I've wondered lately if I need to schedule her for a mammogram. Does she need one? Is now the time to start having those?
I'm in my 50's and I know the aches and pains I'm starting to have... is she having them as well? Sometimes when we go for walks she'll start walking funny, with her arms swinging wide and her back is arched. She says her back hurts. Is it due to her excess weight? Or does she have narrowing between the discs in her spine? My doctor says it's more common in people my age. It's just what happens when you reach your 50's. Oh joy. Is that happening to Beth as well?
If they don't live as long, do their bodies go through the aging process earlier?
What about menopause? Should I be looking for signs of that already? And Alzheimer's. That scares me too. I know some of this could be answered by a simple trip to the doctor, but I also believe the doctors don't know everything about people with Down Syndrome.
I was just reading over at Grown Ups and Downs that she was at a conference where they talked about scientists who are studying the exact things I'm nervous about. I'm a little relieved to know I'm not the only one thinking about these things. I'm also grateful there are people out there doing something about them.
Blog Hop!
6 comments:
Oh Cindy, I LOVE your blog! I've wondered these same things and Ben is only 2 - I know I have a lot of time before he gets big, but my mind often drifts to his aging process. My birthday was last week and I thought about Ben at age 35. I really can't imagine it but I know it will be here before I know it! And thank you for sharing the blog Grown Ups and Downs. It is so nice for me to read about a young man with Down syndrome:)
I'm glad we're talking about these things, thanks Bates Hotel, because I think it will lead to better understanding. Also, I have lots of info to update with your questions, so stay tuned! :)
Ps. Also thanks for the shout out. :)
I, too, was thrilled to find Mardra's blog when she joined the hop - having so much insight from the parents of adults with Down syndrome, like you are, Cindy, is really valuable right now. I have to remember that while Sammi is only 7 right now, the time is passing quickly, and there's no time to waste to begin research and get some treatments for this premature aging we're all likely to see in our children. I'm hoping answers will come within Beth's and Marcus' lifetimes.
Wow, this was excellent Cindy!! I have actually had those very same questions! I have always wondered why our kids looks so babyish for so long in their childhoods, and then as young adults it seems like the aging process speeds up drastically. Very interesting subject!
I've read multiple times in books and medical journals that people with Down syndrome do not get tumorous cancers and I wouldn't think that she would need mammograms. I would check her or have her check herself for rashes on her breast because the one type of breast cancer that is not tumorous is Paget's and it starts as a rash.
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