Thursday, February 28, 2008

Down syndrome

Down syndrome awareness day is March 21st, and I am planning on doing a few posts on the subject in the coming weeks.

I very consciously not dwell on Maeve having Down syndrome here on the blog, as I don't want it to define her. She has so much potential, and is such a delightful girl, I don't want her to be put in a box.

But I don't try to avoid the subject either, and welcome anyone to ask questions, or have a discussion about it. And Janet and I share our joys and frustration with it as it may come up in normal conversation.

So I guess as I plan some of these posts, feel free to post questions about it here, or shoot me an email. I suspect some of you may have questions, but are afraid to ask that it might embarrass us, or make us sad. Don't be afraid. We are tough people.

Some things I think will come up...

The recent bombings in Iraq, with suicide bombers with Down syndrome
The language of Down syndrome
Maeve's developement in comparison with other kids

Again, I hope you ask if you have questions about this subject.

Comments:
Oh, I'm so looking forward to your posts. I was wondering myself why you seldom write about down syndrome. Would love to know your insights on the matter.

Kisses to Maeve and Cecelia.

Cheche (Philippines, mommy to Raphael, ds)
 
Hey Matt/George :) George Matt,
Good talking to you today. You guys have a great blog. See you all soon. Tracy
 
As a teenager with a disability and a person with a passion for all special needs children, I have often wondered a parent's opinion on both the best things about raising a child with Down Syndrome and the worst things about raising a child with Down Syndrome. What's your opinion?

Did Maeve have any of the more common heart or stomach complications?

Your videos are adorable, and I hope to hear from you soon!
 
Thanks for checking in! Glad you like the videos Erin. I want to spend a little time before I answer your first question, but can answer the later.

There were some concerns with Maeve's heart initially, but it wasn't serious, and it corrected itself within a year. She did have a simple procedure last year to correct a kidney reflux problem, and spent a couple days at the hospital. Fortunately it was successful.

http://linkert.name/blog/archives/2007_02_01_archive.html
 
What is your biggest dream or goal for Maeve?
 
When you spend time with Maeve, we forget she has Down Syndrome. We are truly blessed to have a healthy Maeve who can give Grandma and Grandpa hugs and kisses. Who loves to be read to and will play any game with us. Who will jump down the step and if you take her for a walk be prepared, she doesn't like to stop or turn around. Maeve just like our other Grandchildren our blessing to us and we thank God for them all.

Grandma Jo
 
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