A few weeks ago, I had two encounters--a day apart from each other--that made me stop and think.
Encounter #1--I went by myself to a new fabric shop here in The Village for the first time. The lady that runs the shop was extra chatty...and to make a long story short, she mentioned something about working on quilts when she spent a long time in the hospital while her informally-adopted son was sick with brain cancer and then he passed away. I said something about knowing about hospitals because my daughter had had a congenital heart defect. She then asked if that had stunted Miss B's growth. And I told her that yes, she is little, but she has Down syndrome, so who knows if she is little from that or from the heart defect or the combination of the two?
As soon as I mentioned "Down syndrome" the lady, who had been pleasant (pushy, but pleasant) made a face...like the "I just smelled something really stinky" face. Then she went on to say that she has "a r*tarded brother"--and she said "r*tarded" in the slang way, not the medical way--"who only has the brain function of a four year old...And how when he was born, the doctors didn't think he could live so they just left him in the incubator pushed to the side to die...but he didn't die...And how he rides horses and does the contests where they jump over fences and bushes and such...and how everyone says how great he is doing at it and what a wonderful rider he is...when really it's just a great horse and her brother can't really do anything..."
Every sentence was full of disgust and irritation and...embarrassment maybe? I'm not entirely sure. But not positive AT ALL. She went from being chatty to venting...and then after she vented about her brother, she couldn't get rid of me fast enough. It was eerie and unsettling and offensive...I mean really, didn't I just tell her my daughter has Down syndrome? Did she expect me to wallow in her intolerance with her? I know that life can be hard on siblings of kids with special needs--that is something I worry about with T-Man and Fearless--but I certainly hope that in our family, Miss B brings out more tolerance and patience and love in all of us...not bitterness.
Which brings me to Encounter #2--I went to another fabric place--a furniture factory warehouse where you can get upholstery fabric for $4/yard and under (LOVE that place!). As I pulled into the parking lot, I noticed a truck that had the same Down Syndrome Awareness specialty license plates that we have on our van. I got excited because I VERY rarely see other people with Down syndrome...just a handful of times in the past two years...so I figured I'd have to walk in with my radar on ultra high, just so I wouldn't miss them. As I was unloading Miss B and Fearless from the van, an older typical man walked out, alone, and headed to the truck. I was disappointed that I still would not be seeing anyone with Ds, but either way I didn't want to pass on the opportunity to speak to someone else in The Club.
So I said hello and pointed out that we had the same specialty plates...and instantly, I went from strange-lady-in-the-parking-lot to a close friend. The man had an 8-year-old granddaughter with Ds and he told me all about how she was just wonderful. And he wanted to meet Miss B and hold her and talk about any health issues she'd had and tell me about his granddaughter's health issues and on and on. He ooohed and aahhed over Miss B just like she was his own granddaughter. We stood there talking for 15 minutes in the hot, humid Southern summer...simply because we both loved someone with some extra genetic material. When the conversation ended, I was on cloud nine.
I've been rolling these two encounters around in my brain...trying to figure out the difference in reactions. What happened in the first lady's family that caused her to be so bitter? What about the Grandpa made him so loving of not only his own granddaughter, but even toward my daughter--whom he had never even seen before? Is it just different personalities? What do I do to encourage T-Man and Fearless turn out more like the Grandpa and less like the fabric shop lady? Why do some families embrace and encourage their family members with special needs while other families splinter because of it?
I don't have any of the answers to those questions...but the stark contrast between the two encounters has deepened my resolve to do whatever I can to foster good relationships between my all of my children. To teach them all to respect each other and support each other. I know it can be done.
Oh, how I hope we are on the road to that place!
2 days ago