31 for 21: Day 1: It’s Down syndrome Awareness Month!

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It’s Down syndrome Awareness Month! It’s a month where those of us in the community raise awareness and celebrate our loves that happened to be born with a little bit extra. One way I like to do this is to participate in our cyber-buddy Tricia, over at Unringing the Bell‘s creation 31 for 21. Currently this is hosted by Michelle with Big Blueberry Eyes.

Here’s the skinny- and hop over there to sign up if you would like to play along: You post every day, at least once day, for 31 days (each of them in the month of October, which is Down syndrome Awareness Month) on any topic, to raise awareness about Trisomy 21. 31 for 21! (Topics about Down syndrome are not necessary, though it’s encouraged that you mention why you are taking part in the challenge at some point during the 31 days.)

I’m taking part again for my fifth year because Disability Awareness and Acceptance has always been a part of my make-up. But in February 2009, it hit closer to my home and heart. When the Quail came to us in all her glory we learned after her birth about that little bit extra residing on her chromosomal pattern in every cell of her being. And we believe that about her with all of our hearts- she isn’t lacking a thing. She’s all there. And a little bit extra.

Just like her sisters, who very few, other than the geneticists in our lives; would describe as “typical.” She’s a wonder. We’re blessed to witness the growth of these sisters on a daily basis. That said, I don’t think I’m going to go on rants about stereotypes, or resource listings or basic Down syndrome information this year. That’s already out there. Check back in my archives to the month of October in 2009, 2010, 2011 for my versions of that. I would reckon they still hold water. Or for more up to date information go visit our cyber-pals who are also participating in 31 for 21 and get schooled by them with a personal touch. I know I plan to and Michelle will keep a list of where to find them!

Last year I did something more simple. I shared 31 ordinary things about my extraordinary girl. I had spent almost 4 years going on about what a wonder she is and decided that my contribution to Down syndrome Awareness efforts would be to show the beauty of how ordinary life continues when you have someone with a little something extra in your life. In January 2013 I changed my blog from The Tao of Tulips to Ordinary Afters. This change was significant, primarily to me. It represents a systemic shift in my heart, my mind, my focus. A shift to focus my documentation of our family life as a whole so that the other girls don’t feel diminished or unseen in my eyes or heart. Of course I’ll still note and advocate for those with disabilities and specifically Down syndrome and still talk about how it affects the Quail. Because it would be naïve to say it doesn’t. It does. What matters most to me though, is my continual search for our family’s ordinary afters. A way to show our children one day how beautiful their lives are because they are their lives. To train myself to look with gratitude on what I am blessed with rather than dwell on what others might see in our family as lacking or burdensome.

Life is what you make of it. Those happy, joy filled moments- they are just as real and authentic as the pain-riddled sad and chaotic-3-ring circus angry ones. Both pass in the blink of an eye. Some days there are more of one than of the other. Some days what we are grateful for is the fact that we get to wake up and try again.

Over the last year what I mostly want to write about is inspired by the images my camera shows me along with my addled thoughts that I nurse to in the middle of the night about the domestic scenes from earlier in the days and weeks. Most weeks on Fridays I have taken part in Lisa-Jo Baker’s five-minute Friday writing prompts. I fall in love with these writings as I often come back to them and see them as the momma diary of my heart.

These bits of prose coupled with our favorite family storytelling photographer- Ms. Molly–  coming to visit us this past year where she showed us what she sees in our life is what I want to share this month.

When I got my first glimpse of the session, I quickly wrote to Molly to tell her how with each photo, I could have written a narrative. The whole of them pulled together by Molly’s delicate eye and heart delighted me as much this time as the time she spent Saturday Morning with us a couple of years ago. Seeing these images that represent both a few moments as well as the whole of our family with all of its life and light and shadow and work and play- it makes me proud that I get to spend my days with this dear collection of people. Yesterday morning as I was uploading some pictures to the blog of the Quail from the last year I knew which one I wanted to start with. Molly took so many pictures- but one in particular, this one in particular, of the Quail shone through with the light of her spirit. As I was scrolling to it though, I kept stopping at other ones of her that I still felt that desire to tell a story about. And then it hit me. These images, the way they make me feel, this life that we have created; this is what I want to share this year for 31 for 21. So I’m going to use Lisa-Jo’s format to write for five minutes on one word that comes to mind on these individual images that dear Molly Flanagan* took.

Because this family and life- the ability to have it, to live it the way we choose- this is the gift of the advocates and families that have come before us. Because without them- if the Quail were born to another time and place- I might not have had the gift of her in my life. I might not have the privilege to both raise and be raised by her. I might not have the support and knowledge and confidence that those who have paved the way before me have gifted. I might have been forced into believing that giving her up at some stage along the way was the best thing for her, for myself, my family, my home, my community. I get to keep her though. I get to raise her where she belongs because of the hard work of those that came before her. And that, I can’t say it enough- that is an endless privilege and not one I take lightly- the gift of our family’s Ordinary Afters.

*All images categorized with 31 for 21 this month are courtesy of the talented eye of Molly Flanagan.

five minute friday: last

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

Go:

Dear Sugarplum, she is the last. The tiniest and most intentional of our dear ones. We didn’t know if or when she would come. We thought maybe our Quail would fill that role of baby in our heart and homes. I made peace with this. I ruminated while putting on socks and shoes and changing diapers over the pros and cons of adding on and into our already bursting to full days. And then the pressure let up. No more pumping, no more nursing, no more daily illness and breathing treatments. She walked. She started to talk. The sisters they played together the best of friends- their giggles and tumbles heard throughout their days. Where once they held hands while nursing, they now moved on to holding hands through playground fences and our days filled a regular but routine pattern. And it felt manageable. Ordinary even.

Then one day at an appointment where we opened our calendars to write in a date and time for open heart surgery; instead, the good word that there would be no surgery in our Quail’s future came as a gift from above. No opening of her heart.  That small fact alone opened our own, the trickle and twinkle of a thought that well, just maybe we could welcome one more into our lives. And so we did, that month we made the decision to have another. And 10 months later she came. Her birth, her pregnancy the easiest and yet most traumatic of them all. The room it filled with misunderstanding as I pushed and contracted. Somewhere in the trail of paperwork a note was sent that we were welcoming a second child that would also have Down syndrome like our Quail. Suddenly my world shifted through pain and pushes and dropping blood pressures. I knew this wasn’t the case but in the middle of all of this it was hard to know what was true and what might come. I labored on with insistence to these nurses that filled the small space of this birth. I knew who my children were despite what they read on a chart. My dear doctor, she came in and as we pressed on into the last bit of delivery she stopped me and made us wait. The cord it was tight. Coiled around this dear girl of ours. She pushed back against my pushes and rearranged this young life so that she could take her own deep breaths. That moment when I expected her wail to spread out between us came and passed. Silence instead. Just as piercing that empty sound was. We waited with baited breath for her own first one- and then, after the questions hung between us she wailed and I cried. She was going to be fine.

At last.

Our last.

Our Ordinary After.

Stop.

five minute friday: small

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

Go:

First she was small and it was big. At least bigger than not existing. This hole, this tiny absense of tissue that once spanned a mere 2-3 mm of space in the center of her heart shouldn’t have existed. A VSD. A tiny missing piece at the very core of her.

That’s what people see and assume when they see her, when they hear about her, when they read about her- that’s she is missing something. Both in her genetic make-up and in her understanding of the world.

But that’s not true. That’s not what Down syndrome is or what it means. She isn’t missing part of her brain, her chromosomes, her understanding, herself. She’s all there and a little bit extra. A little extra genetic material on that infamous Twenty-first chromosome. How it impacts her, how we understand that it impacts her, that is changing. We used to think people like her shouldn’t exist. They should be locked away. Given away. Terminated. An example of an error on the part of nature and God. Slowly, person by person the world is coming to understand that, that “fact” just isn’t the case.  Her existence is not imcompatable with life. It’s quite the opposite. This dear girl, she’s a person, a human being who thinks, learns, understands and acts with choice and free will just as any other human being. She just needs to do it in a little different fashion than other people. In her own way In small ways she is different, yes. But in the big ways, when we take the time to get to know her we find out that those differences don’t have to be big. It’s us that choose to see her that way, not her. That when she and people like her are given the same care and attention that any other human would, that they have the same potential to grow.

To grow like the tissue in the center of her heart has over the last 4 years. Now, that absense of tissue, that space, it’s miniscule. About the width of two hairs according to the doctor as of yesterday.

“She has no restrictions. Don’t limit her.” is our new prognosis.

I have to agree. We won’t, in big ways and small.

Now the differences are small, now that she’s big.

Stop.