Monday, March 21, 2016

3/21:World Down Syndrome Day

I am forever indebted to your sister for giving me the gift of Motherhood. She is my absolute pride and joy, that one. My only girl. My firstborn.

She came into the world easily, all rosy and pink. But once she arrived, she curled into a tight little ball and stayed that way for the next two weeks. It was as though she wasn't quite ready to be here. I would often try to unfurl a skinny arm or leg, interested in seeing her tiny fingernails or ten miniature toes, but as soon as I pulled a limb toward the sky, she would snatch it back like a turtle returning to its shell after a breach. 

You came easily, too, and were likewise flushed. However, there would be no constricting into a ball for you.

You, my little friend, were as loose and as floppy as they come. You melted onto my skin like thick, warm molasses and allowed me to examine any extremity I wished. You were more flimsy - unaware of your soft muscles and unsure of how to use them -  but you always moved freely and remained unabashedly open. 

Both of you were born with a supernatural ability to love. While you love with abandon and glee and absolute unrestrictedness, your sister loves fiercely and intently and deeply. I pray constantly that I am raising you well - your sister all cocooned and sensitive and kind. And you all loosey-goosey and bold and effervescent.

I don't know how to do that, by the way - raise children. People don't arrive with manuals. And they certainly don't come with rules or one-sized-fits-all packaging. 

Your sister doesn't have a syndrome or an illness or a disability. I don't have to advocate for her as loudly as I do you. I haven't had to fight for her in meetings or had disagreements with specialists, educators or doctors over her well-being. But there is still a part of me that worries about her non-stop. A part of me that fears her heart may get broken before it's fully formed.

I know she will one day grow up and find her passion and leave me forever. Of course, that's ultimately what I want for her. It's just that I will miss her SO much. I will miss scratching her feet and smelling her hair and holding her tight and whispering in her ear: iloveyouiloveyouiloveyouiloveyouiloveyouiloveyou.

I pray no matter how big she gets or how much she accomplishes, that she will always be my little girl. That she will always know I'm her number one fan and a safe space to return to should she ever need.

And guess what, sweet boy? I pray those exact things for you. But I have to admit, I didn't always have similar invocations.

When you came into this world, my heart swirled with a love so deep and fierce that it scared me. But my mind was late to the party - it was foggy and bogged down and overwhelmed with foreign words and medical terms and inaccurate stereotypes: 

Trisomy 21. Down syndrome. 

Low-functioning, hypotonia, developmentally delayed, medically fragile, simple, slow, stubborn (okay, they weren't all wrong), limited

Those words came at us like a cannonball and they were interwoven with other words like cardiac defect and open heart surgery and NICU and therapists and interventionists and then, oh God, cancer

It all came so fast and we didn't know what to do with any of it, but we moved forward and we warriored on and we shouted things like, "Down Syndrome Rocks!" and "Cancer Sucks!" and other various cliches that made us feel better, but none of it meant a thing, really. Because cute phrases and lofty platitudes have nothing on you, baby. The ideals and buzzwords and anecdotes that I post to social media and even to this very blog are not real life. 

You are real life. 

Do not be mistaken, son. You are the person that is changing this world. Not me. Not my words. Not some stupid blog post or popular hashtag.


I was so ignorant when you were born and for that I'm sorry.

I didn't pray that you would always be my little boy, because I just assumed you would be. I didn't pray for you to live a busy, successful, fulfilled life because I was too busy praying that you would just live. I didn't pray for you to have equal opportunities because I was too worried that you would face discrimination and cruelty simply because you have an extra chromosome.

I had no idea that we would one day want for you the same things we want for your sister. I thought you would live with us forever. I never considered that you, too, might one day grow up and find your passion and decide to leave. 

But baby, I know better now. Of course, I still pray for you to be healthy. I still pray that life isn't too difficult for you and that you face any adversity head on. But I also pray that you find whatever it is that makes you happy. I pray for you to make lifelong friends and play sports and go to college and even get married if that's what you want.

We are just at the beginning of our journey, you and me. I am not naive enough to think it will all be easy. I understand that most everything will be more difficult for you and that your life will not mirror your sister's exactly. I don't want it to - I want each of you to spread your wings however you see fit. 

But I want you to know that there is not one single thing for me to say about Down syndrome, because there is not one single thing that I would change about you. 

Some people may try to tell you otherwise, but you came into this world perfect. Pink and floppy and almond-eyed, you taught me everything I needed to know about life. And you continue to teach me still.

I'm so thankful to be your mother and I love every hair on your head - the ones that were there before you lost them to cancer and the ones that grew back afterward. I love your delight and your energy and your uncanny ability to bring joy to everyone you meet. I love your big, smart brain and your rapid, beating heart.

And I love every single chromosome in your body - especially that extra one.

Happy World Down Syndrome YOU Day, my sweet boy.

Spread your wings and fly.

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1 comment:

  1. Just finding your Instagram and your blog. I love your story. Keep it up


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