Friday, January 24, 2014

She is different and that is OK

Thinking back over the past few years of blogging, it's amazing to me at times how much my perspective has changed towards Down syndrome.

When I first got the news, I was very torn up about it. I've written quite a bit about those raw emotions and how they have evolved since.

After she was born and we worked through some pretty major health issues, I came to a place of peace about it all.

Then- during that first year of blogging, I put on my rose colored "I love Down syndrome" glasses, and blogged quite enthusiastically about something that I frankly didn't know anything about.

"She can do anything she sets her mind to do!"

"Nothing will hold her back!"

"She is a rock star!"

"Watch her wow the world one unexpected achievement at a time!"

"Her extra chromosome gives her extra super powers!"

In a sense, as I stared at my cute little baby who wasn't THAT far off from other cute little babies her age, I worked my words to make her life and future achievements seem as normal as possible. But even more than normal. I put her on a pedestal of "AMAZING" while insisting that she wasn't special...she was just a little girl. She had Down syndrome, yes, but she was MY child therefore she would be the most NORMAL child with Down syndrome to ever walk this earth. She probably wouldn't be affected much by it. She was a perfectly normal little girl wrapped in the gorgeous attire of Down syndrome, using that label only when necessary. The hard stuff and the difficult times didn't exist because in my mind she would be pretty darn normal if it killed me to get her there. Therapies, school, adorable outfits, gymnastics classes, swimming, skiing. SHE WOULD LEAD A NORMAL LIFE and I would push her there. An extra chromosome wouldn't hold HER back!

But as life would have it, the parade of time has marched on and my adorable little cheerleader has fallen further and further out of sync with the other cheerleaders her age. She has fallen so far behind that she is now marching in a completely different group. A group that I didn't sign her up for. It just- happened. Her carefully coordinated outfit doesn't match her new group, and yet she can't keep up with the pace or coordination of her age-appropriate group that has the matching twirly skirts and batons.

And there have been moments during this falling behind that I wanted to grab her arm and push her along to keep up. YOU CAN DO IT! You're a ROCKSTAR! Let's wow this crowd with everything that you can DO! Throwing myself into the parade and carrying her where necessary- I wore an "DON'T PANIC you can still be NORMAL!" smile plastered on my face as she stumbled to keep pace with the cheerleaders effortlessly doing things that she just couldn't.

And somewhere in those first few years of panicked frustration, I slowly realized- she is going to be different. She IS different. No matter how much I try to normalize her- she will always be different.

But more importantly? I realized- that is OK. Different is OK. Her pace is OK. Her goals, hopes, and dreams are OK- even if they aren't "rockstar" status.

Different can be beautiful. Different can be awe-inspiring all on its own. Different isn't something to be afraid of.

Being Different is OK- even more than OK- it can be a wonderful, amazing thing. Addison doesn't need to wow anyone. She doesn't need to "overcome" Down syndrome. She doesn't need to prove anything. She doesn't need to keep up pace with the crowd that was born 4 years ago.

She is just...Addison. And her name brings with it such a mix of personality, difference/normalness, amazingness/not amazingness, achievement/non achievement, happiness/sadness, brilliance/slowness- a mix all her own. A mix that I have come to accept slowly over the past years. A mix that I have come to love all on its own not because I created and pushed it to happen but because she did.

She will march in the parade of life to her own beat. She will wear her cheerleader outfit with pride and not make a big deal that she is no longer in the group that she started out with. She will fall behind and my job is not to push her to where I think she should be. It is my job to stand on the side lines and cheer enthusiastically for how beautifully she is marching and twirling her baton. At her own pace. In her own group.

I am not responsible for pushing her to achieve normalcy in life. I am responsible for accepting her- for exactly who she is. I am responsible for loving HER- not my expectations for her. I am responsible for seeing that she is different- and loving her for it.

Don't get me wrong- I do intend on helping her get the best- education, opportunities, and life experiences. But how she marches the parade of opportunity in front of her is her choice. This is her life- her diagnosis- her best work. Not mine. And I accept her for who she is and her best for the achievement it is...

...even if the parade is picking up pace while her marching speed is slowing. Because if you knew how long we worked for her to be able to march on her own? You would understand the fantastic celebration going on on the sidelines.

A celebration of difference. And achievement. All at once.

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