This past weekend I had the privilege to be a part of the Expressing Motherhood–South Bay Showcase. Created by Lindsay Kavet and Jessica Cribbs in 2008, it’s a stage show of writers, sharing or performing their pieces on motherhood. Any take is welcome. You will laugh, cry, be inspired, and be validated or encouraged as you listen to diverse stories that resonate somewhere within us all.
I poured my guts and tears into my piece. (I was the Serious One on stage.) It’s a re-vamping of an earlier blog post, yet much more revealing, raw, and honest.
Here it is:
I didn’t ask for a disabled child.
But he was given to me on Friday, June 27th, 2003.
My son–Ryan Bradley Patay.
No mother puts on her pregnancy wish list—“unhealthy child, with a genetic syndrome that NO ONE HAS EVER, EVER heard about, tremendous heartache, a side of stress, preferred moments of depth and wisdom, plus personal injuries like a bruised tailbone.”
No mother. And certainly not me.
I cry, I cuss, I pray.
But then sometimes, when I look at my little Ryan, all snuggled-up on the sofa, I momentarily forget about my anger and my angst, and my hacked-up heart, because all I see is his beauty and peaceful face.
I see his long, skinny limbs outstretched, mouth open, breathing loud. Not quite a snore. His own sounds. It’s family movie night, a Friday. And of course, Ryan, our little narcoleptic, lasts half an hour before he is asleep. He even missed the popcorn! How did that happen, when that is all he REALLY cares about?
When I look at my sleeping prince, I am overtaken by an avalanche of love and compassion. I think about his brain, all wired wrong thanks to missing parts of chromosome 15. I think about his muscle tone, so low, so weak, contributing to small frame. How his muscles had to be taught to move, activate and strengthen. Until, at last, at age 3 he walked. FINALLY. With his own Ryan-gait-and-rhythm.
I think of his little hands that can’t give a firm handshake. Straw-like fingers with nails that grow way too fast. Nails that undue my skin during meltdowns. The fingers that struggle to close buttons, and zippers. He has yet to learn how to tie his shoes, but I refuse to buy any more baby Velcro sneakers. He is 12 years old now. With pubic hair and hormones.
For a moment, ever so brief, I forget about Prader-Willi syndrome.
I forget about calling 911 when he was so out of control that he lurched at me from the back seat while we were driving home. It too, was a Friday. He was out of his mind anxious and agitated, like a cat ready to pounce at any moment. I pulled over to the side of Via Del Monte, a main artery in our neighborhood. He was clawing and scratching and grabbing at me, practically sitting in the driver’s seat with me. I was then balling uncontrollably and could barely get the words out to the 911 dispatcher. We were tracked by my iPhone. Of course, as friends passed by, three cops are trying to help us and I still could hardly talk through my tears. Eventually Ryan calmed down, and one of the officers kindly followed us home.
I was mortified, scared, angry, grieving, and this time, this crisis, I was without compassion. Once again, I could not believe this was my life. This is my Motherhood? Dramatic, traumatic and uncontrollable. When I was breathing in Ryan’s newborn smells, I never imagined this happening 12 years later. I never imagined being AFRAID of him.
I look at him and think how tortuous it must be to have his level of anxiety. So riddled daily with insecurity about potential changes or his next meal. He asks and asks and asks about his food schedule and his menu.
“What time am I eating?”
“Where am I eating?”
“Why do I have to wait until 6?! Why can’t I eat at 5:30?!”
“What are you making me? How many things will be on my plate?”
In rapid-fire succession over and over.
Only us Prader-Willi families talk about food all the freaking time. All day, every day. It’s exhausting.
Sometimes, in a “normal-happy” moment, I just see God’s gift to our family. That I get to unwrap every day.
I just see the ONE child of mine that everyone says looks like me, with his blond hair and blue eyes.
I just see his grateful heart, and recognize once again HOW MUCH he has taught me–to be grateful for the tiny-priceless-life-moments.
And yet–I don’t unwrap this gift every day with joyful expectation.
I flip. I flop. I grieve, I grit my teeth, or I get lost in my love for him.
If this Motherhood Journey were easy-peasy, I wouldn’t need an effing tattoo that says GRACE on my wrist. It says GRACE to remind me every day, that I AM ENOUGH, and I DO ENOUGH as his mom.
I needed this inked on my body permanently, because I forget and doubt myself, ALL THE TIME.
I take deep breaths and look at Ryan. I stare at him. I drink in his innocence, his goodness, my boy who’s so polite and an immense pain in my…heart.
And in those pure moments, I forget all the “WHAT IFs.” And I wonder–how many Fridays do we still have left together?
***By the way, friends, I will be in the next installment of Expressing Motherhood in Santa Monica, May 3, 2016, with a different piece. I will be Funny One on Stage this time. 🙂
Please come! Tickets on sale now ($25) and they ALWAYS sell out. Go to expressingmotherhood.com TODAY.