Let's face it, our children are pretty mysterious. Down syndrome is not a simple thing with simple answers, and every day parents, caregivers, educators and physicians struggle to figure out what to do. What works for one may not work for another. Therapies, lesson plans, behavior plans, medical interventions, treatments...everything.
There are some pretty commonly-occurring factors in the lives of people with Down syndrome, some or all of which are important to each and every one of you. I have my own list of issues and unknowns that I would love to see resolved within Samantha's lifetime, certainly sooner than later.
For one, CHD (congenital heart defects). Samantha was born with a hole in her heart, allowing oxygenated and un-oxygenated blood to mix. It required surgery when she was 4 months old. Approximately 50% of people with Down syndrome have some sort of heart defect. It's a lovely product of that extra chromosome. I can only count ourselves incredibly lucky and fortunate that she did not have some of the other health "products" such as lung issues, leukemia, thyroid issues (although I have heard it's a case of when she will develop a thyroid problem, not if...), and so, so many others, too numerous to list. And, while Samantha's heart was fixed by the brilliant surgical team at CHOP, there are others that may be too complex to treat, or may need to be monitored closely for life, and children with Down syndrome are still being born with this condition that I would love to see gone one day. For now, not enough is known about its cause other than it just happens. Perhaps one day...
Another mystery my daughter's genetic biology holds that is so important to me is the link between Down syndrome and Alzheimer's disease. That link is definitely there, but when, when, WHEN can this be fixed? When can we find a cure? I'm honestly shit-scared (pardon my French...) of this. Both of my grandmothers had Alzheimer's when they died. It's called the long goodbye, and with good reason. It's heartbreaking and tragic, and I know this particular card is doubly-dealt to Samantha. People with Down syndrome are likely to develop Alzheimer's at some point in their lives with much more frequency, generally much, much earlier than someone with a typical chromosomal make-up. Find the mysterious link here, and perhaps a cure can be found for the entire human population as well. Our children hold a key to a very big, very far-reaching mystery indeed.
Cognition is a hot-button in the Down syndrome community. I will touch it very gently here. I'm not saying I want to make my daughter different, or to take away Down syndrome - on the contrary! I LOVE who she is, and Down syndrome is certainly a part of her. But I know what kinds of struggles await her and others with Down syndrome. Will she be able to effectively count change to make purchases? Will she be able to remember and learn the tools necessary to live independently and safely? Short-term memory is a big issue riding on the extra 21st. If I can help alleviate some of those struggles by increasing her memory, by helping her to retain the tools she'll need to be a productive, healthy, independent person in society, then I'm all for it.
Many struggle with apraxia, gross motor development issues, vision and hearing loss, etc. What would you like to see explained, researched, lessened?
Today I am braving the unknown of another sort...I am creating my very first, my very own, my very experimental, Blog Hop!! This is really a big deal for me, and I'm seriously hoping it doesn't fail to produce. Then I guess I'd have to call it a Blog Hop Flop...har har har... Anyway, my point is, this is a conversation that I really want to get started amongst bloggers, and amongst friends. I have ulterior motives here, and would love to hear what you've got to say on this topic. If you are not a blogger or you don't want to post on this topic, please, please leave me a comment with your thoughts below!
We all have different points of view, different experiences, different dreams for our children and loved ones with Down syndrome, all of which shape our lives, our very existences. And somewhere, sometime, someone will come along to help us answer our questions, to hear our pleas, and to bring results. I know it. But as a first step, I'd love for you all to bring it to the table by telling me what mysteries about your child you would like to see unraveled in the future.
I'll run the Hop through Saturday, July 13th.
In the Link Title/Blog Title field, please type the name of your blog and the name of the post, in this format: Blog Name: Post Name. In the link field, please paste the link to your post. Click Enter.
And, somewhere in your post, please link back to this post and encourage others to join the Hop. Share it on Facebook, in your groups, wherever. Trust me, this is not something I will do often, but as my first attempt, please humor me and play along. :-)