Emma's been sick off and on for the better part of the last two months and recently got worse. We've been juggling her various doctors' appointments and work and, well, just getting through the week.
In the process, time has slowly slipped away from me. September quietly faded away. The weather grew colder at night. We've had endless rain.
And, October - Down Syndrome Awareness Month in the United States - has arrived.
I've been thinking a lot over these past few days about what that means for us, for Emma.
Is it a focus on what is possible? On what the real limitations are? On a combination of both, while emphasizing Emma's value and inclusion in the larger world?
Of course, it's all of the above. But, it's also more simple than that.
It's about always recognizing her humanity first - before her diagnosis, before what she can or cannot do, before the limitations of her physiology.
It's about recognizing that she is, first and foremost, a little girl. A beautiful little girl at that, both inside and out. If you've met her, you know. Emma shines. She shines like the sun when it's one of those crisp, clear, blue-sky, breezy kind of days where the light cast is orange-yellow, and everything looks and feels beautiful.
It's also about recognizing that she's a little girl who, despite her limitations, will likely achieve most of what her peers are able to accomplish, just at a slower, more deliberate pace.
By chance, I was able to meet with a group of twelve or so moms in my neighborhood recently, all of whom have children with Down syndrome, other genetic disorders, or who are on the Autism Spectrum.
When I learned that there were twelve of us convening, I was overwhelmed by the number of families within walking distance of our home who are confronting similar issues to us. I was heartened by the community of it all; the notion that there are twelve other moms in walking distance of us who understand in a way that one can understand without words spoken, thoughts conveyed.
A mom in the neighborhood who happens to know many of us individually through school, community events, church, the Down Syndrome Network, or other venues decided to convene everyone so we could get to know our neighbors - so many of whom share our experiences with myriad doctor visits, educational institutions not including our child to the degree we (or the law sometimes) expects, and fears about our child's ability to ultimately live an independent life.
But, it wasn't intended to be a group of mothers gathering to mourn our children.
It was and is intended to be a group of mothers gathering to celebrate our children, share information, gather resources, schedule play dates, and create an echo chamber on issues important to us in our local school system and community.
During the gathering, everyone shared their story. Most moms, unlike me, had several children - a mix of "typical" children and those with special needs.
I learned from those moms that the biggest difference between a child with special needs, like Down syndrome, and a child who is "typically" developing, is something I already knew from my limited experience:
That most everything with Emma requires intention. From teaching her to swallow, lay on her side, or roll over, to teaching her to crawl, climb, purse her lips (to drink from a straw for example), or walk...it's all intentional and daily and requires repetition, repetition, repetition.
Whereas for a typically-developing child, it's not, or at least not nearly as much. As the informational sheet I received from my daughter's pediatric practice - following her twelve month visit - said regarding development (of a typically-developing child): "Your child will soon begin to walk, then climb, then run. These achievements are inherently reinforcing for the child, and parents need to do little else to promote this development." (emphasis added).
I recall reading this after the appointment, feeling the knots in my stomach begin to tighten, the tears well-up in my eyes.
For me, awareness of Emma's Down syndrome is awareness that as a parent, I must do a great deal to promote her development. But, if and as I do my job, Emma can and will grow and learn with leaps and bounds. Emma absorbs, and practices, and sometimes regresses, but is always moving forward on some aspect of her development. In this month of Down syndrome awareness, I celebrate her many achievements.
Awareness for me also means that I am blessed to bask in Emma's light, her joy, and her love.
I find that I do more and more each and every day.
How about you? What does awareness of Down syndrome mean to you, your family, your community?
p.s. Here are a few photos of Emma's most recent achievement. She's up on one knee and has started moving forward a few nudges with her tummy off the ground. It's not a full-fledge crawl, but it's progress from her commando-style dragging to crawling and the eventual transition to walking. yay!!!!
No comments:
Post a Comment