The other day Silvi and I took a walk to downtown Linden Hills (not even a block away, I love where we live!). We popped into Sebastian Joe's for an ice cream. As we were leaving I saw a lady walking with another young lady into Bibelot (a fun, girly kind of shop). I noticed that the young lady only slightly looked like she had Down Syndrome. I followed them into the store even though I had not intended on going in previously. Ok, so I've kind of gotten a little bolder in my old age...I observed the two women as they shopped. When the older lady was separated from the younger and went up to pay I walked up to her. I asked, "Is that your daughter?", "No, actually she's my niece", she said. I then asked, "Does she have Down Syndrome?". Her smile faded as I asked the question. "Yes, she does.", was her response. I then said, "My son has Down Syndrome too." She immediately stepped out of line, eager to talk to me.
Jenny is 25 years old. She had just moved into a house with some other girls. She graduated from High School and reads such books as Hannah Montana. Now this part really amazed me, Jenny has had "0" surgeries, I mean none! I couldn't believe my ears. How wonderful for her and her family. I wish that were the case for my Ian and for all others with Ds.
6 comments:
Welcome to the world of DS stalking!
I'm really glad that you made the connection.
More than likely, if she only had slight physical characteristics, she had mosaic Down syndrome. Mosaic Down syndrome is a rare form of Down syndrome where a percentage of cells have the extra 21st chromosome and the remaining cells are unaffected. Many individuals with mDs do not have all the physical characteristics, so it is harder to determine.
If you would like more information, please visit International Mosaic Down Syndrome Association at www.imdsa.org and my personal blog Mosaic Moments at www.mosaicmoments.today.com
Great Blog! Thanks for sharing!
That's the thing with a syndrome - it's a collection of symptoms, some of which apply and some which do not, but it varies from individual to individual. I remember being so relieved that Meg didn't have the bowel problems often associated with DS. But then I once spoke to anther father who's son did have the bowel problems but was so relieved he'd not had to deal with the heart problems and surgery Meg had had.
elbog- I know, it's crazy. Anytime I see someone with Ds now I HAVE to talk with them and find out their story! I feel compelled to do so!
Kristy- I had heard of Mosaic Ds but didn't know what exactly that meant. Thanks for letting me know. There is a mom that I've met through our Ds Group that has a son with Mosaic Ds but I've never met him before. Thank you for educating me. Thanks for the positive feedback on my blog, very encouraging! ;0)
Kim- Always delighted to hear from you! It is very interesting/difficult how Ds manifests itself. It's so strange how it affects some more severely than others. I wonder what the contributing factors are for that...
Hi - I stumbled upon your blog - and really enjoyed reading your posts. How old are your children? I have twins - 3yo - one of whom has DS. I don't know that because the physical features associated with DS weren't as obvious that the person would necessarily have mosaic ds? Some people (I mean other parents of children with ds)say that it is hard to pick in my Hannah - but she sure has it - it is just all mixed up with those traits she inherited from us as well as her own unique bits ds or no. Anywasy - I just wanted to say that I enjoyed reading your blog.
Shelley-Thanks SO much for stopping by my blog. I'm very glad you like it! It has been very encouraging to me to be in touch with others whose lives have been touched by Ds. Best wishes to you and your family.
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