Monday, March 23, 2009

World Down Syndrome Day

Although I'm two days late posting for World Down Syndrome Day, I didn't not want the day to slip by without comment from me.

I'm so happy that people from all over the world celebrate Down syndrome on March 21st. Its a wonderful feeling to share that kinsmanship with people I will never know, and with many, many people I have gotten to know simply because one tiny little extra chromosome happened in our lives some years ago.

Before I had Paige, and admittedly, perhaps even for a while after I had her, I never understood when parents who had children with disabilities would say they wouldn't change a thing about their child.

Surely, that must not be true. O.k., its easy to say that you love your child just as they are, but wouldn't you really want them not to have Down syndrome, or any of the other number of things that a tiny genetic blip could make happen in a body?

Just last week, when I was discussing genetics with my sister, she said, "well, of course, if there were some magic pill you could give her that would make her walk and talk and...."

Hmmmm....I began to think. What if there were a magic pill? Would I be rushing to get a prescription written? Excited to give it to Paige right away?

To be honest, if there were a magic pill that would have taken away the medical issues she has had - esophageal atresia, gall bladder problems, reflux, orthopedic problems, the list goes on and on and on...I may just sign up for it.

Because its never easy to see her hurting, to face another surgery, or another health set back. Its ingrained in my body as a mother to want her to be healthy.

But being "healthy" has very little to do with her developmental delays, or her extra chromosome.

I really have no interest in THAT magic pill. I truly do understand now what it means to love your just child as she is. I love every single part of her - her silly giggle, her sweet hugs, her goofy little ears, her starfish hands, her brushfield spots, her long skinny legs...

I love the good stuff and the rough stuff. I love how she has this intricate way of communicating with me that involves very few words. I love strolling through milestones, and jumping up and down with excitement at goals that have taken forever for her to meet, when I might otherwise have missed them completely had she raced through them.

I love the journey - the people we meet along the way - the experiences we have - the way the world looks a little more beautiful seeing it again from her eyes.

I love this little soulmate that God has given to me, keeping her just a tiny bit closer to me, tied to my heartstrings with a tiny little extra chromosome, that will allow me a few more years to claim her as mine, all mine.

I love the wings she will sprout, that will slowly let her fly away from me, and the beautiful eyelashes that will look back at me and flutter, and make my heart soar.

I love every single thing about her, and no, I would not change a thing. Not a single thing.


Tara Marie said...

What a beautiful post Betsy. I"m so blessed that your little girl is part of my life.

Happy Birthday Dear Paige.

and I want to thank you for this post, as you speak my heart. Many times I say that I would not change a thing about my daughter and accept her unconditionaly and exactly the way she is......and there are many who are on a mission to find that pill and love to bash me [and a few others who feel the same way] and it is so refreshing to read you post and feel at 'HOME' with someone who feels the same way.

I love you and your sweet Birthday girl.

simplycamille said...

Hey, I could have written this post! As God is my witness, as I have the privilege to personally know Paige, and you my dear friend, to personally know Emma, my heart is always celebrating when I think of, look at, talk to or about those 2 girls of ours. How could we wish it to be different?

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