Thursday, September 1, 2011

Baby's Got Down Syndrome, 4: She's Got My Legs

I watch her tromp across the kitchen floor after her pink ball. She has on navy blue shorty shorts and tiny boy-looking New Balance sneakers. I am captivated by the shape of her legs. Those sleek calves, rugged knees, and straight-lined thighs... How can it be that she has legs just like mine?

By the end of my pregnancy, I had so many fears about what a child with Down syndrome might be like. Surely this child would be chubby and have a flat face. Stubby limbs, a giant tongue, droopy everything... Isn’t that what the literature from the doctor’s office said?

And then I delivered a baby that looked like... a baby. She was fairy tale pretty. Three years later, that baby is gone, replaced by a little girl with my legs. But something still isn’t right. Meningitis turned her mind into a labyrinth. Words cannot escape, images are lost, neurons get rerouted. This is not the typical development of a child with Ds, is it? Specialists brushed off my concerns contributing every difference in her physiology to the extra 21st chromosome.

On blind faith we adopted two more little girls, a three year old and an infant with Down syndrome from a village orphanage in Ukraine. The moment Masha and I locked eyes, she burst into a smile and reached for me to pick her up. She then wriggled away and ran for the swingset. From there she rode a tricycle down the walkway, and then she took her baby stroller for a walk. A little while later she climbed into a real stroller parked on the porch and began strapping herself in.

Later on I found that Masha will brush my hair, try on my shoes, dress and undress herself, and sing into a pretend microphone. She puts her plate in the sink, carries her own backpack, plays soccer, and plays tricks on me. She feeds her dollies, enjoys tea parties, understands English, and picks berries with her brother Jade.

Life with Masha confirms what I have wondered about, suspected, worried about... that Kimani’s brain trauma changed everything for her. Thus it is bittersweet for me to know that children with Down syndrome are so very much like ordinary children.

Baby's Got Down Syndrome, 1: Lunch at Pizza Hut

Baby's Got Down Syndrome, 2: Crossing the NICU Styx

Baby's Got Down Syndrome, 3: Seeing in the Raw

This is the final article of a four-part series.


Meriah said...

It does me a number when everything is ALWAYS attributed to the extra chromosome...or whatever other disability the child has. And our gut hunches as parents are brushed aside.

Beautiful post.

Anna said...

Since bringing out little one home a year ago I have learned some of the same things you speak of. Having her in our life is no big deal,She is more like our older three children than not. The biggest problems we encounter are dealing with the medical and educational community... then other peoples opinions. sigh. I agree- beautiful post.

Ann Kroeker said...

What a journey, TUC! Thank you for helping us see through your eyes--your story--the beauty of your Down syndrome babies. Your journey throughout Kimani's childhood has been so complicated by the meningitis...those doctors brushing off your observations is really something. But you knew.

Not a Perfect Mom said...

Every time I see another feature in Brooke that is from our family and not her extra chromosome I'm tickled pink...because surely she was supposed to look nothing like any of us...just another child with DS...

Leah Spring said...

I have the same thoughts. Angela had two strokes for sure before she was 12 months old, and possibly another when she was 10. (something happened at 10, symptoms show something happened at 10, but brain scans don't show the typical evidence of a stroke.) The effects she has to her motor skills are what hold her back so much! Then we brought home Axel, who is a very typical little boy who just turned 11. Axel also has DS. He has bypassed Angela in many areas already and he's only been home for 9 months, 7 of which have been spent dealing with extremely limited physical activity due to the fact he has (had?) AAI and a spinal fusion, and just got out of a halo 3 weeks ago. And still, he's bypassed Angela. I agree....bittersweet.

Unknown said...

a Mama knows...I have to say I love to read you!! and have missed your writing!! but I know you are to busy with those wonderful kiddos!! I am not a fan of chalking things up to the triple chromosome...but I am a huge fan of girls who get there Mama's nice legs! smiles

Jennifer said...

I just want to thank you for sharing your journey. God has given you a gift -- these children, yes, and then the ability to share your life in such an honest and beautiful way. I'm really just grateful for how God made you ... every one of you. -- Jennifer Dukes Lee

Penny Green said...

One of the very first things that struck me after having my son and being given a booklet about Down's Syndrome was a photo of 3 sibling, the youngest of whom had the extra chromosome.

Despite everything I had just read and the undoubted similarities between the photos of all the individuals with Down's Syndrome, here was a family photo where there was no doubt that all 3 youngsters were indeed siblings. Suddenly I realised that the characteristics of the syndrome are just one part of the individual and there is so much more genetic material that comes from their parents and will influence there appearance too.

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