Wednesday, May 25, 2011

Down Syndrome from a Mother's View

The following is a post by my Mother. As many of you already know, I have a brother with Down Syndrome. I asked her to write about him and I am so glad she did. My mother is an amazing writer and her honesty is commendable and inspiring. Enjoy....

What does Down syndrome mean to me? It’s being shockingly pregnant at 42. It’s never doing the testing – it wouldn’t have mattered. It’s the unacceptable silence at birth. “Paul, is the baby okay?”
“Yes, he’s perfect.” Why did I not recognize this foreshadowing?
“Have you ever heard of Down syndrome? I think your baby has it.” The doctor moves away from me. I am alone.
It’s the sledgehammer effect. They present the worst case scenario. They offer to take this child away. Then comes the parade of professionals (I credit the term to my friend, Paula Collins, the mother of a Down syndrome child, Tucker, born five days before Mark). A blur of faces. A table full of brochures, information…overwhelming. I dig in. I move on. I present the best face I possibly can to my children, Jeffery, 27, Adriana, age 13 and Sammy, age 7. The baby is no different than these others to me. Simple as that. But, what the future holds (I don’t even know anyone disabled!), is much more complicated.
Paul is devastated, too. We are moving in a blurry surreal world. The air is thick with the shock of it. We can’t possibly be in this place. Our relationship has not been on steady ground. But here we are.
We start Early Intervention. I begin to manipulate and try to mold his little body to do the things it will need to do in this life. He needs to be stronger because his muscles are weaker. I cannot sling him on my hip as I did with my other children; he must be held side saddle in front of me to prevent pelvic spread. He has weak respiratory – he’s hospitalized three times for pneumonia – once on Christmas Eve. He scoots in the strangest manner. He walks at 27 months. We cherish the milestone. I potty train him for about a decade. He gets it. Regresses if emotionally upset. There can be no conflict, no upset in our life. Try keeping things always on an even keel. Try doing that through a fairly hostile separation. Try doing that with a now 13-year old rebellious, in-your-face teenager in the home.
That magic number 13 has appeared again. Now it’s Mark. Yes, he is rebellious, independent, and sometimes “in-your-face.” He’s also the greatest, most fantastic kid ever. He is a born musician. He plays his guitar morning, noon, and night. He loves Dispatch and Creedence and Neil Diamond. He rips on his Djembe drum like the guys at the Respite Center taught him. A friend, Rhonda Matson, allows him to play backup drum for her at Open Mic night, and he performs on the bongos with the high school chorus. He listens to youtube and has his own facebook page. He doesn’t like school work, but he does okay. Occasional and sometimes random behavior issues.
He goes to the Respite Center. A place beyond mere human words. A decade of going there has helped Mark to grow, to socialize, to learn. I meet others with a wide range of disabilities. I meet the parents. I find myself at the funeral of one of these children and it is so very, incredibly sad. I look around and think how lucky I am to be in the presence of such great people. How did God find me so deserving of this great gift?
Mark goes to Special Olympics. He loves it. It is as much social as it is athletic. I gather with the special parents and we talk about stuff that is important to us. Gone are the days when I fit in with the other mothers. I’m old now and my son has Down syndrome. The landscape, the communication has changed. At the meets, we parents cheer the other team (almost) as loud as we cheer on our own. You would never see a fight in the bleachers or a foul word being slung.
Not always so in the neighborhood. Sometimes there are little spats between the neighborhood boys, but just like any other kids, they make up and move on. They fly down the street on their scooters. The playing field is leveled. I can hardly believe my eyes (and I couldn’t look at first, not wanting to see him hurt and afraid, too, that I would somehow jinx him) when I see him flying down with such grand ability. That’s my boy! The one they offered to take away… The one a little test and a little procedure would have taken away. The one I have been blessed with.

Oh, and the foreshadowing? It was absolutely accurate. I wouldn’t change a thing. He’s perfect.

Thank you so much Mom for sharing this with my readers. I love you!!


  1. Beautiful story about Mark, raw and.real. He's the best and iam proud to be called Mema by him.

  2. This gave me chills. Your mom is a beautiful writer! I would love to read more from her.

  3. Beautifully said... I can't wait to see him sing and play guitar again, he made my day : )

  4. That was so beautifully written!

  5. i am a very proud mummy of a beautiful angel with smith magenis syndrome and i love your mums words. they are so honest. thank her for writing them for me and thanks for posting them xxx

  6. A story well written and oh so worth reading. We all know how SPECIAL Marky is But his MOM sure is too.We love you all.Give baby Hendrix a kiss and hug from us. Love Auntie Carol & Uncle Tom

  7. had to stop and wipe my tears... more than once.

  8. This is such a sweet story. My future husband's aunt has down syndrome and is my favorite person in his family. She is always up for fun and a smile and is more full of life than most people I know.