October is both Disability Awareness Month, and Down Syndrome Awareness Month. Awareness is a life or death reality for children with Down Syndrome. Molly was born January 29, 2003. She's one of the lucky 15% of babies with Down Syndrome to be allowed a live birth according to Global Down Syndrome Foundation statistics. I wish I could go back to the mom of eleven years ago and paint the beautiful picture that is Molly's life and reject the dismal picture painted by our society.
In the hospital after Molly's birth I was having a hard time with the "what ifs." One of the pediatric nurses in Spokane said firmly, "You don't know what the future hold for ANY child. Don't put a box around Molly. Let her show you what she can do." Molly, like most kids with Ds had an accompanying health problem, in Molly's case, Herschprung's disease (corrected with colon surgery when Molly was three weeks old). Molly's first few weeks were a medical rollercoaster ride; it was a ride that redirected my role as mother...to advocate.
Molly is now 11. She has been a source of entertainment that only a Molly boogie, or off-tune karaoke of "Let It Go" can bring. She has an adoring family. Her two sisters keep me in check especially if they feel I am spoiling Molly by telling me, "Molly can pick up her stuff too!' Molly has an older sister Madelyn (14) and a younger sister Chloe (9) who are the unsung heroes in Molly's life. One day after school last year, Chloe, in tears, said, "Molly doesn't hug me long enough at recess." Molly will be in fifth grade this year with Mr. Lux (aka Mr. Yucks, one of her favorite people). His daughter Whitney was P2P Volunteer of the Year in 2013.
As parents, Lawson and I worry about inclusion, puberty, and the tricky balance of pushing too hard or not enough. Molly is reading at a Kindergarten/First Grade level. She loves her iPad and our dog Gus. She loves chickens and elephants. She loves her friends and being the mother hen to younger cousins. Can you catch the theme? Molly loves. I am only aware of three things Molly does not love; hurrying, taking showers, and spiders.
This summer our family visited Yellowstone National Park in Wyoming. (Did you know that persons with disabilities can get an Access Pass that allows free entrance for the family and 50% off on campgrounds?) The whole car erupts in cheers for Molly every time we enter a National Park for free. Molly loves the wildlife, hiking, and camping. Molly has completed three Junior Ranger Programs, at Glacier, Crater Lake, and Yellowstone. She has the badges to prove it.
In Walla Walla we have found lasting friends through Parent to Parent, a community that shares and supports each other in the often turbulent seas of disabilities. Even without paid services, we have benefited greatly from the P2P Parent Workshops learning about PAVE, developing skills for future employment, WA Endowment Trust, and so much more.
The last three summers Molly has enjoyed P2P Summer Camp (thank you Blue Mountain Community Foundation!!) and her time at Camp Meadowood Springs (Speech Camp) at Tollgate, OR (a forty-five minute drive from Walla Walla). She comes back after a week at camp with better articulation and stories than an entire year of speech therapy.
P2P basketball coach Patrick McFetridge and Challenger Baseball coach Mike Spiess have shown me how investments of time can transform lives. We are so grateful for their volunteer service and kindness. Other early heroes in our world include Karen Gaffney, self-advocate and athlete with Down Syndrome, who recently received an honorary doctorate at the University of Portland, Oregon. Speaking of heroes, we are very fortunate to live close to my parents who are a huge support to our family.
I am passionate about bringing awareness to the abilities of our children. Molly has taught me to look outside the box, to stretch in ways that aren't always comfortable. She has taught me that ignorance is to be feared more than lack of intelligence. Funny, when I stopped putting Molly in a box, endless possibilities opened for both of us. Shouldn't it really be called developing abilities, not developmental disabilities!