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Saturday, March 21, 2009

World Down Syndrome Day



Today, March 21st, is World Down Syndrome Day. This date is chosen because it is 3/21 and Down syndrome is also known as Trisomy 21. 3 copies of the 21st chromosome.

This year also marks the 50th anniversary of the publication of Professor Jerome Lejeune's discovery of the extra copy of chromosome 21.

I like this message:




Although I'm almost 6 years into this journey I never expected to be on, there are days that I do struggle. I love and accept Kayla for who she is, and I don't struggle with the diagnosis itself, I do struggle sometimes with the challenges that diagnosis brings with it. I struggle to find the best way to parent her - to do right by her and figure out the best way to teach and discipline her; and I feel that I fail her in a lot of ways. I'm not patient enough (even though everyone says having a child with special needs will teach you patience, truthfully, I'm still waiting for that to happen!) I do worry about school and friends and her future; and while I'll worry about things with Lucas too, admittedly I know it'll be a different kind of worry - it just will.

So I do struggle sometimes, as all parents do, but today on World Down Syndrome Day I celebrate my daughter and all that she is and all that she is yet to become.

Because even though she frustrates me so much on some days, my love for her is greater than that :) I wanted to make a slideshow celebrating what she means to me, but just haven't had the chance...so instead I'll reach back to the archives and repost this one from her 3rd birthday. It still holds the same sentiment.

17 comments:

Sunny said...

Happy World Down Syndrome Day! You summed up exactly how I am feeling today. I loved the slide show of Kayla. She is such a doll!

Nancy said...

We talked about "Williams syndrome pride" at our convention. I really struggled with that concept at first, but I am pretty proud that my son is a member of an awesome group of people who happen to that his syndrome. I think it is important to have a day like World Down Syndrome Day and to celebrate your beautiful child, diagnosis and all.

Junior said...

Beautiful video, Kayla sure has grown.

~ Teresa ~ said...

Michelle,
Your video made me cry... Such a beautiful girl... and a great tribute. teresam

Karen said...

I know those fears and doubts, but I also know that neither of us would trade what we have for what we dreamed of once. Happy DS Day to you guys1

Lianna said...

You're not alone in any of your feelings, Michelle. We love our children for all that they are, and we do our best for them as best we can.

Happy World Down Syndrome Day from Ottawa, Canada.♥

Sari said...

Happy World Down Syndrome Day Michelle to you and your family.

A beautiful honest post that we all relate to.

Julie said...

I struggle with the same things you do. You are a great mom.

grandma said...

I cried the first time I saw that slide show of Kayla but they were happy dears brought out by the love that is in my heart for our little girl and I cried again tonight when I watched it for the same reason and because I see how much she's grown and learned in the last 2 1/2 years. Happy World Down Syndrome Day my precious, beautiful granddaughter.

I loved the Special Olympics msg from Sarah Palin.

Michelle said...

Happy World Down Syndrome day from one mom to the next....she is BEAUTIFUL!

Bonita said...

It appears that Kayla has been photogenic since day one. What a cutie!

Thanks for sharing the video of Governor Palin and her little boy too. I hadn't seen him since he was a wee little baby. Wow! He's got him some hair going on!

I don't think I've ever told you that my kids and I have helped out with special Olympics for the last couple of years and we always have a blast.

Kim said...

Happy World Down Syndrome Day....belated :-) Kayla's music video is beautiful!

Nancy said...

Okay, you made me cry! Partly because I know I'll never have a little Kayla, I'm happy with my 3 boys, but there's a tiny part of me that is a little sad that I'll never have a little girl like yours. But mostly because your Kayla is so beautiful and I was very touched by your video.

Happy World Down Syndrome Day.. sorry I'm late.

mommaof4wife2r said...

kayla is so lucky to have you as a momma...you rock it out, girl! i love that girl...

Jeanette said...

I just bawled through this whole video! Gosh, I am such a sap! She is SO beautiful! I loved this! Thank you so much for sharing. BTW there is one shot where she looks EXACTLY like Lucas!

Tracey said...

Don't worry about be patient - we are all human. NOBODY is always as patient with our kids as we would like to be. Your daughter is destine for wonderful things... She is beautiful and truly a special gift. Your blog shows the ups and downs of parenting. The good times and the bad. Your family is such an inspiration for all!

Anonymous said...

I love the slide show!! What a beauitful little girl you have!!Happy World Down Syndrome Day!
love ya, mimi