OK, I know it's not politically correct to use the word retarded. But, what if it were not a "bad" word? What if you hadn't had a negative reaction when you saw it in my blog title? Search your heart. Rethink this. My son has Down Syndrome. He lives in a world in which everybody treats him like he's "retarded." I'm his mom. My son teaches me so many valuable lessons that I am often too "slow" to get. I'm the Retarded (Loving) Mother.
My brother-in-law, Gary, sings opera, loves opera, and knows opera. Gary has often said that the tenor, Mario Del Monaco had the kind of voice that could awaken the soul and music in anyone who heard him. Yesterday, Taylor heard Del Monaco sing. Right here in our kitchen. Aunt Martha worked the computer. As soon as brother Cole saw Taylor's response to the music, he began filming. Taylor sang from his heart. Unabashedly. Openly. Freely. With gusto.
His soul was talking/connecting/singing back to the tenor who had awakened something inside of him.
This is a rendering of a raw, unfiltered music connection ----straight to the heart/ears/soul of a precious human who has no preconceptions about what "good" music is. Taylor just sang what he heard. Would that we could all sing and dance----as if no one were watching.
Sing on, Taylor.
Sing on---each of us.
Taylor is 31. Thirty one.
I have had 31 (thirty one) years to do this life with him. I gave birth to Taylor when I was 31 (thirty one.) So, I knew myself and had grown all sorts of beliefs and convictions on my own before this imperfectly perfect child was placed on my chest and on my heart. Now I have spent 31 (thirty one) years undoing or re-doing or redefining or trying to make sense of my life----and my life with Taylor. My life with words like retarded, inclusion, special needs, handicapped, mentally challenged, "suffers from", "debilitated by".....
Don't you think 31 (thirty one!) years should have given me plenty of time to figure this all out?
Spoiler alert: No. There has not been enough time yet to figure out this life. Even given the 31 years. I am such a slooooooow learner evidently.
Yesterday when Taylor was using his arms again in the pool---for the first time in maybe 8 (eight) years----I was struck dumb with the "miracle"---medical, divine, mysterious-- miracle of it all. For years we have gone to this same pool to swim. For the past ten years and though five massive spine surgeries, I have spent most of the time in the water weeping as I have held Taylor's head so he could float on his back. It was the only position in which he seemed to not be in pain. I have prayed a million prayers and sobbed on a hundred Thursdays that my sweet son might feel better---might be able to do something in the water other than just float. And look-a-here.
"Well, darn if it ain't a miracle right here and now on this ordinary Sunday." I heard myself mutter.
Taylor used his arms. Pain free.
I might have missed this miracle because I was thinking about how fat I looked in my bathing suit----how I needed to color my hair---how I can't seem to make intelligent conversation about books or music anymore.(Could I ever?) I might have missed this miracle because I was thinking I needed to go to Lowe's to get some carpet cleaner or had lost myself in counting all the calories I had eaten since lunch. I might have missed this miracle because I get so caught up in the intoxicating myth that everybody else (you) has it all figured out. I let thoughts like that distract me and I fling myself far from my center-----don't barf now....but from that center that is the divine and "whole" place in each of us. Yep, I can go way off course and lay myself out in my own self-made ditch. Ditches sometimes feel safe. I find comfort there. (Another myth)
But then I miss miracles. Extra-ordinary miracles.
Taylor used his arms. He swam without pain.
Maybe this is all I have to know.
Maybe it's all figured out.
Life is just waiting for me to notice.
Mysterious. Miraculous. Divine.
Pay attention, all ye...and me.
Driving down Alps Road in Athens last week, Taylor reached over and took my hand. In his gentlest voice, he said to me, "Taylor perfect." A thunder-clash of emotions clutched my insides---and then found a soft resting place deep within. "Yes. Taylor perfect," I vowed. Taylor perfect. And so it is. And always was.
I pretty much cried every day the first five years of Taylor's life. Now I just cry on Sundays. (Card by CC Louie)
Welcome. You're brave to be here with me.
"The test of the morality of a society is what it does for its weakest citizen. " That's kind of heavy, but it is something that has tugged at my life for the last 33 years. So, here's my story. I am a mother of a son with Down Syndrome. Pull up a chair. Sit with me in my life. Teach me something.
Look at all of these incredible people below!! You can be one too!
My son is 33 and has Down Syndrome. I did not get the manual when he was born. I am making stuff up as I go. I want to be the best mother I can be to him. My son is "complete." He' is perfect. I'm the slow one. I'm trying to catch up.
