World Down Syndrome Day

Today is World Down Syndrome Day. March 21st, or 3-21, to remind us that Down syndrome is a genetic anomaly--a triplicate of the 21st chromosome, such that folks with Down syndrome have 3 instead of just a pair, of them. Three 21's.

I have wanted for quite some time to write again here; in the back of my journal, I have been keeping a list of essay ideas as they present themselves to me. But these have been hard months, and I haven't felt much like writing, except for myself in the comforting privacy of my journal pages. After finishing my doctorate in December, I nearly collapsed from the effort, and am still working to pick myself back up and rejoin and construct a usual life, a life without the pressures of doctoral studies and a dissertation. And, as many of you know, my friend's son Eddie passed away over a month ago, and that devastation--the hope of his lung transplant followed by his death within 24 hours thereafter--has only increased my tiredness, my grief, and my anxieties about what Life (capital "L") is really about, and what we can expect, and how we can keep ourselves from being just so damn disappointed by our experiences of it.

Which is why I wanted to write today, on World Down Syndrome Day. Because in the midst of real fears, made-up anxieties, exhaustion, grieving, and the suffering I witnessed this winter, I have a four-and-a-half-year-old girl who is saving me.

This is not what I expected when I discovered Moriah had Down syndrome in the minutes after her birth. In those early hours, I began calculating the many ways in which Moriah would need me, would need us. Some of those needs were immediate--milk and hospital stays, open heart surgery and medications. When she contracted seizures in her first year and I was tasked with giving her a shot in her thigh every day for a month, I made myself do it by telling myself that I had to save her life. And we have saved her numerous times--times when she turned blue and we called 9-1-1 and made yet another ambulance ride to an emergency room for respiratory distress. Or even in less dramatic ways--like when I caught her before she fell off her swing set ladder, as most moms and dads have done.

I am her mom, and this is my job: to save her when I can. And in this life with Down syndrome, that is more often than it might otherwise have been.

But I did not expect that Moriah, a person with Down syndrome, might save me. And yet, that is my experience of life with Moriah this winter.

In February my meditation teacher suggested we choose an informal practice to increase awareness during our day. Many yogis choose brushing their teeth or stopping at a traffic light to remind them to pay attention to their breathing and to return to the present moment. After a week of forgetting to use these ordinary opportunities for breath, I was searching for a daily experience that would help me remember to pay attention to my life, to live in direct experience and get out of my head, if only for a few seconds. What do I do every day multiple times a day that would remind me that peace is available, that Love is here? And then I realized--Moriah. She hugs me, multiple times a day. And I decided to use those hugs as reminders to breathe, to whisper thanks, to bask in Love.

Moriah makes a distinction between two kinds of hugs. One, a shorter and gentler version, she calls a "hug." The other, longer and powerful and even a bit rough and sometimes silly, is what she calls a "squeeze." Both are absolutely disarming because Moriah is, whether hugging or squeezing, an amazing hug-er.

There is a stereotype of people with Down syndrome that says they are always, and even indiscriminately, affectionate. Sometimes Moriah can be. But not usually. Usually when she is greeted by someone, as when I come home from work after a long day, she yells "No!" or blows raspberries or (our least favorite of late) spits in the person's general direction. She can be moody, as all toddlers can. What I'm saying is, a hug from Moriah means something, because she doesn't just give them away to everyone she meets, every day. They are special, reserved for moments she chooses, and they are usually not given on request.

They are also highly empathetic. I have had a touch of stomach flu this week--not enough to keep me in bed, but enough to make me feel unwell. While I was lying on the couch the other morning, Moriah made it her business to give me hug after hug. "Oooooh, Mom," she said comfortingly, "It's okay. Don't worry. No cry. All better." She hugged my head. She hugged my belly. And my neck. Jason kept insisting she needed to get out the door for school, and still she could not stop hugging me.

Moriah's hugs call me back to what is good in this life. We suffer, but not every minute, not all the time. There is beauty here, too, and goodness. There is kindness, love, and tenderness. Moriah's hugs--and she reminds me here of a hugging guru I read about recently--are one of the foundations these days of my spiritual practice. They pull me away from myself, and from suffering, and push me into hope.

The day after our friend Eddie passed away, I was helping Moriah in the bathroom when I suddenly burst into tears. The unfairness of it all, the tenuous gift that life is, the impermanence of our children's existences...suddenly, I was crying and crying and feeling terribly, of course, for crying in front of Moriah.

As I sat on the bathroom floor in tears, Moriah's little arms encircled my neck. "Mom, squeeze!" she commanded. And I did. I squeezed as hard as I thought her body could handle, and she held on to me, tightly. I breathed, and I cried, and I hung on.

On World Down Syndrome Day, many folks may learn some more about Down syndrome, and what it is, and how challenging it can be for families. But I also hope that when folks hear about Down syndrome, they also hear stories like mine. Because the truth I continue to discover is not just that I have some responsibility for saving--or advocating for, or helping--Moriah. One hug, one squeeze, at a time, she rescues me.

On World Down Syndrome Day, may more of us welcome the opportunity to be hugged and loved by someone with Down syndrome. May Love, expressed in the ways we have least anticipated it, save us.