Thursday, October 02, 2008

Blogging for Down Syndrome!

Ok, so I'm off to a rocky start! Once again, I have committed to blogging each day in the month of October in recognition of Down Syndrome Awareness Month. And...its October 2nd, and this is my first post ;)

Life so gets in the way of documenting our life!

Paige has been to CHEO several times in the past few weeks. At first she had some bloodwork come back funky, and we thought she would need to be transfused. But after some retesting, everything seemed to stabilize.

And then she had regular appointments, her vision and hearing tested, a trip to the dentist, etc. Yesterday she had a barium swallow to look at her esophagus. She's been having a bit of trouble eating lately, and we just want to make sure everything is o.k. before she heads into surgery.

Her surgery date for her hip is November 4th. Ugh. I am really dreading it. It will mean a full body cast for another 12 weeks or so for her. Its not so much that its because its obviously a lot of work, and that she can't go to school, or any of those things.

Its more that Paige is really not able to understand why she is going to go to the hospital, and then wake up in a body cast again. Its that nagging Mommy fear that she will somehow feel like she is being punished, that she has done something wrong to deserve this, or whatever. Its that I can't know what she is really thinking about it, and I can't explain the "its for your own good" concept to her.

Its that mom thing that would willingly take twice as much hurt and inconvenience to save her just half of what she has to go through.

At the same time, I'm also so grateful and so thankful that so far, all of her "boo-boo's" have been fixable; that there are amazing doctors that have laid their hands on her, and with the help of God, kept her healthy and alive and with me.

Every single day, without fail, she comes to me, and just soaks me in. Without a word, she will hold my face, and run her fingers through my hair, and just look into my eyes, with such love and joy and innocence, so unassuming and so in the moment. She will listen as I talk to her about her day, and laugh when I sing to her, and babble away to me the way she often does.

Its as if her body is transparent, and her soul visible. I have never, ever lost that feeling that I had the very first moment I laid eyes on her - I remember saying, "I can see her soul" while we were still in the delivery room, and now, 11 years later, that is still so true.

Every day, someone is touched by her, every day I tell a sweet story about her, or someone tells me something funny she did, or something nice she did for another classmate of hers. Wherever we go, kids recognize her and speak to her, and exclaim excitedly to their parents, "LOOK! There's Paige!"

Sometimes, we talk about having "feather" moments - when a little feather floats into your busy day just to remind you of something bigger than you, greater than you - and it brings back a wonderful memory, or fills your heart with happiness for a moment, or simply offers a deep breath to carry on...

As I sit and type and look out my window at the gold leaves falling from the tree, I think about Paige, and know that this is very much her destiny, and thank God, mine as well. Just like that tree, her beauty takes my breath away, reminds me of how blessed I am, and lets me know that all things are renewed.

What an amazing girl she is.



luvmypeanut said...

Beautiful post Betsy!!! And while Paige is a beauty, so is her mommy!!!

I will be keeping her in my thoughts and prayers as she nears surgery...

All 4 My Gals said...

Every time I read your writing, my breath is taken away and I sit with tears of joy in my eyes. If only everyone could have the privilege of knowing you and Paige, of having their life changed for the better by your love, her fortitude and the joy you both so easily give to those around you. I love you honey, I Love you both, more than I can express!

New Orleans Live said...

Betsy - thanks for reminding me about this month being Down Syndrome Awareness Month. You may remember the film "Think of Me First as a Person" - well, The DVD is finally available. Please visit for more info.

While finally having the DVD available is great news, I write with sad news as well. Dwight Core, the subject of the film, passed away earlier this week at the age of 48.


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