Tuesday, September 9, 2014

Do We Celebrate Only "Inspirational" Individuals With Down Syndrome?

Last night I found myself at church, helping a large team wash/dry/organize the toys in all the nurseries. As someone who greatly benefits from the nurseries (and has a child in almost every one!), I thought it was good that I be there.

Driving there, I was regretting agreeing to it. I was exhausted from a very long day. My eyes were mad at me so I had to take out my contacts and put in my glasses and I hate having to go out in public wearing my glasses. But upon arrival and chatting with people-who-i-am-not-ultimately-responsible-for-how-they-turn-out-in-life, I discovered that this was the perfect way to spend my evening after a trying day down in the trenches of Motherhood.

Biting away my tendency to be overly sarcastic when I get super tired, I was pleased to meet some new, really lovely people.

In fact, one lady who I met blew me away with what was going on in her life right now. I started a casual conversation and it ended impacting me far beyond what I could even explain to her.

I was bent over a sheet of Duplos, trying to dry them, when she introduced herself to me. About two sentences in, she revealed that she is a caregiver of two adult women with special needs. About three sentences in, she revealed that one of these women is a 46 year old who has Down syndrome.

My first response to this was delight. "How cool!" She looked at me a bit quizzically, so I explained that I have a daughter who has Down syndrome. Normally when I tell people this, they get a light in their eyes as they no doubt imagine the little cutie in my life that I have been blessed with. But this caretaker who had been working with this woman for a month had a different look in her face. A look I couldn't understand.

So I probed, asked more questions, put my nosey little self right in her way until she told me more. (Yeah, my social skills go downhill fast when I get tired.)

She explained to me that she has to help this woman do very simple things- like take a shower; that she is completely nonverbal; that they are working on her not hitting everything with her arms…and banging her head, and that she gets extremely frustrated a lot and does a guttural sort of whine. Her face was full of love and tender caring as it was obvious that she was an amazing caregiver, but the words that she spoke could not be disguised. This was her reality right now.

I have to admit, hearing this put a ginormous knot into my throat. I have spent a lot of time imagining Addison as an adult, and when I got her diagnosis, this is the type of life that I feared. These are the types of descriptions that kept me awake at night, sobbing into my pillow and desperately pleading to God to let this prenatal diagnosis be wrong. It had to be wrong. That couldn't be my daughter. No. Please no. Just hearing this description last night brought all of those emotions and memories rushing back. Emotions and memories that haven't come to me in years now.

Because as Addison has introduced herself to us, fought for her life, worked like crazy to achieve so many things, and wormed her way into residing Princess at our house- I forgot about these descriptions that used to haunt me during those long nights of pregnancy. But every once in a while, this memory will poke its way back in with "She won't be a cute little girl forever!" or "She is becoming more and more different from her peers as she grows older" or "Look at that IEP! Can you imagine all the modifications she'll need in twenty years?"

And last night as I bent over Duplos, working like anything not to have my tears re wet all of the blocks that I just carefully dried, I felt like I just got punched in my stomach.

I think the disability community has done a great job sharing stories of individuals with Down syndrome who have broken through stereotypes and achieved great things. He owns his own restaurant! She sells paintings to the Prince! She writes books! He is a professional musician! He went to college! She is a dancer!

My newsfeed is constantly full of these stories, and they always put a smile on my face and give me such hope that Addison too will achieve great things with her life.

But what if she doesn't? Are the adults with Down syndrome who aren't breaking stereotypes worth less celebration? If their story isn't shared in a Facebook article that gets hundreds of thousands of likes and thousands of "AHHHHH this is amazing and so inspiring!" comments, does it make their story less amazing and inspiring? What if their achievement is not running a restaurant but mundane, day-to-day achievements that the rest of us could do since we were 5 and never thought a second about it being an actual achievement?

What if Addison gets to 46 and has to go move in with someone else because Aaron and I are too old to care for the constant care that she needs just to go through the day? Is she not an inspiration then?

I have been thinking a lot about this lately, because if we put "inspiration" only on the stories that seem "normal" and amazing, then I think we downplay the lives of those living a very different version of Down syndrome. I think for every one story of "inspiration" shared online, there are hundreds of individuals living with the same diagnosis, but a very different life path. Should we celebrate these people too?

Yes, yes, a million times yes.

The dream I have for my daughter is not that she breaks through some sort of invisible Down syndrome barrier and accomplishes "WOW SHE DID THAT???" things. The dream I have for my daughter is that she takes every day and lives it to the best of her ability. That she is happy. That she learns to love the Lord. That she finds her spot in life and lives the heck out of it. That she finds something that she loves to do (whether it be writing books or bagging groceries or greeting people at church or simply offering a comforting hand to hold) and seizes each day with a zest unique to her. That we can settle on some sort of communication (whether it be verbal, sign, or an app where all she has to do is push buttons) so that she can tell me her needs and wants, her wishes and her dreams.

BREAKING NEWS! Adult with Down syndrome went shopping with her mother today! They bought matching necklaces, and then the adult (named Addison) asked specifically for ice cream to go with her lunch. They walked all around the mall and didn't say much, but they held hands and seemed to really enjoy each other's company. Addison was asked for a quote on their day, and she said "Mommy didn't get me ice cream. But she promised it this weekend at Papa's House."

I think life with disability is more than the big stories. Do I appreciate and love these stories? Yes. But I think that there is more to life with disability than inspirational stories. I have learned and been inspired more from the day-to-day with Addison than I have learned in all of those articles combined. Simple, everyday tasks and actions combine to make her life worth more to me than I can even describe to you. Her achievements do not define her worth. Her achievements are hers to pick and choose. I am here only to celebrate with her no matter how big or small they turn out to be.

And if there comes a point in life when she needs to move on to live with another family like a typically developing adult would "move out" and my role as primary caretaker isn't my reality any more? I have a feeling that Miss Addison will just move her inspiration along with her.

Last night I chatted with this caregiver until she needed to go home to be with her new charge. I wished she had been there last night, because I can't wait to meet her. Will I feel awkward and worry about what to say? Probably. Will the conversation go completely different than the one I envision in my head? No doubt. But will it give me another picture into one of these "different paths" of Down syndrome? Yes. Knowledge can't hurt me. Knowledge only makes me aware of how to love, how to embrace life challenges, how to open my heart to those different from myself, how to put myself out there and unconditionally accept someone for the inspirational person they are. Not because of what they have DONE or ACCOMPLISHED but because of who they are.

Does that sound inspirational? You'll never guess who taught it to me…. #hint #addison #theonewholovesicecream

I can tell you this. A certain little girl will be celebrated around here. No matter what her career path looks like or how high her dreams send her. Because that's not what it's about. Not even a little bit.
Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.

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