Well, I would like to say a big THANK YOU! To all of you who stayed with me through a very long week. I wrote a few articles in our local paper as well and a few people have thanked me for my articles or said, “Wow, it is really great that you are getting involved.” To which I reply, “It is the least I can do.” And it is.
Bear with my disjointed post but you need to understand that as a parent of a child with Down Syndrome if it were not for all the parents and professionals before me, I would be fighting the system to keep Ella out of an institution. You also need to understand that DS changes your life. The things you took for granted with your “normal” children become huge victories for us. I just finished reading a blog, in which the mother was raving about her son who just learned how to pass a ball. Or a mom who’s son just learned how to point to her nose, or blow a kiss, or crawl, or walk, or pull up to standing. After months of intense practice, enormous patience and a lot of hope, victories are won.
Three last questions which I am more than happy to answer.
Lola asked: Wow, I hope someone hasn’t asked this question yet but I was just wondering what some of your fears for Ella are as you watch her grow up? And also what are some of your proudest moments with her?
Fears? My fears are that of any other parent – if you read the last post you will see a glimpse of that. Beyond those however, I can only take every day as it comes, and trust that the God that gave her life, will protect her.
And as I alluded to, everything is a victory! Small victories everyday, like signing for milk and food, or pointing to her nose. Big victories like when I look to the living room and see that she has pulled herself up on the hearth. She is continually giving me more reasons to make me proud.
And Beth said: I know that typically DS people are portrayed as happy and optimistic… do you think this is an accurate portrayal, and if so, why is this?
Hmmmm, I don’t think I am qualified to answer this. I can only speculate that when you one has faced as many challenges as them, you learn what really matters in life. They aren’t looking to be the best, or the most popular, or prettiest – they just want to be accepted.
Last but not least Wendy asked: Finally thought of a question – Are there two types of down syndrome; one found in women who have babies later in life and one that can happen at any time, regardless of the age of the mother?
It’s a good question that I fear I do not have an answer for and I am pretty sure no one else does either. Although older women have a greater chance of having a baby with Down Syndrome, clearly, from Ella’s case, we can see it does not discriminate. Did you know, though, that there are 3 different types of Down Syndrome. I had said before that an individual either has DS or not – they have an extra chromosome or they don’t. It isn’t a matter of how badly they have it (which is what people often say to me – “oh, she must not have it very bad.” This statement doesn’t make sense.
But there are different ways this “extra chromosome” manifests itself.
There is Trisomy 21. This is what Ella has. All cells tested had a 3rd copy of the 21st chromosome.
In Mosaic Down Syndrome only some of the cells have the 3rd copy of the 21st chromosome.
And in Atypical Down Syndrome, instead of an extra copy of chromosome 21 there is extra material on one or both of the existing pair. When I tried to google it to check my facts (no comments please) only a few links come up and it is all the exact same excerpt from a case study. But we have a little girl in our pool physio session that has it.
Crazy isn’t it!
Thank you all again for being a part of this very important week. And now for the winner. Psst, I am stealing the photo idea from lola…except she is a way better photographer…
Congrats Kiko….sorry we missed Gyoza night. I’ll drop your winnings by sometime this week!
Lots of Love Everyone! Here is to Daylight savings time and the start of new week.
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