Down Syndrome Awareness -- A "NORMAL" Weekend

I know I still owe you all Part IV of my "Back to School" Grass Roots Advocacy Efforts but I need a chunk of uninterrupted time to sit and write out what our "talks" are about and all the various topics we may or may not cover during our themed, question-led discussion. See, I've been away -- away from home on a mini vacation and away from my computer -- so I haven't had that chunk of time to commit it all to paper... or screen. But, here's another, different thought... Here's a little story about my life with 3 kids... two of whom happen to be genetically identical to each other including a little something extra on the 21st chromosome (aka Down syndrome).

Can you hearken back to a time when things felt "NORMAL"?

Before I had my "special" children, I never minded the word "normal". Normal meant no fever. Normal meant things were as I expected them to be. Normal meant, as it does in the dictionary, "the usual condition". The "Status Quo"!

Well then, I'm happy to say I had a very "NORMAL" weekend with my special kids. That is, my SPECIAL kids -- without quotes. I mean special because they're unique and awesome and MINE and I love them to bits just the way they are. Yes, some refer to my kids as "special" -- with quotes -- for other reasons. Namely, my 4-year-old identical twin boys -- who are so very different from one another despite looking so very much LIKE one another -- both have Down syndrome. Chances of that happening approach the 1 in a 1,000,000 mark so I guess that makes them pretty "special" (with quotes). But, for the record, my old soul's just as special in her own way. So, me and my special kids had an absolutely wonderful, if not sometimes worrisome, "normal" weekend pseudo-camping. That sounds like an oxy-moron but, truly, it is not!

My cousin has 2 acres of wooded land behind her house in Connecticut and a nice trailer which she hid in the back acre for us, under some trees... fully equipped for me and my family. We visit Connecticut about twice a year. Once to attend the Deep River Muster, the oldest colonial parade in the country, and to swim at Cedar Lake. And, the 2nd time to camp at Hammonasset State Park in Madison, on the north shore of the Long Island Sound. This past weekend was the Deep River Muster which I've been attending nearly every year since I was a child (40+ years) and have instituted as a tradition with my own children. Unfortunately, Hubby had to stay home to work which conveniently relieved me of the trouble of making pet care arrangements. Besides missing Daddy, it's not a total loss as he doesn't actually like the parade all that much. So, I made the trek, not by myself, but with my 3 beautiful and special kids.

On our first night there, we shared pizza with our cousins. Then 6 of us -- my family of 4 plus the oldest two of my cousin's 4 young daughters who joined us in the camper -- weathered a mighty thunder and lightening storm in the trailer beneath the branches of a mighty oak tree. There were 5 very brave kids and a tired Mom in that trailer... But, there was no evidence of Down syndrome.

On day two we went for a walk down town with my Aunt Dolly and a slightly different set of kids -- my 3 and my cousin's two middle girls this time. That's two double-strollers riding down some seriously big hills to a quaint little village filled with artsy shops and a general store where we popped in for snacks and cool beverages for all. Along with the 3 girls, my boys followed me into the store and -- after I dissuaded Michael from a fancy-looking can of JOLT soda (that could have been interesting, huh?) -- chose for themselves, just like every one else, a bottle of apple juice each... Their beverage of choice. All the children drank their juice outside the store while gently petting a 4-month-old Springer Spaniel named Oliver before my Aunt and I pushed -- huffed and puffed -- back up those seriously steep hills to my cousin's house-on-the-hill and our waiting trailer-in-the-woods. And, let me tell you, that was some serious huffing and puffing because I was pushing 80 solid lbs. of boys in my stroller... That's 40 lbs each which, at 4, puts them in the 50th percentile for weight (and height) on the "normal" charts! So, again, not even a glimmer of Down syndrome entered into the picture.

A little while later, we made our annual trip to Cedar Lake. YES, I worried about being able to watch both of the boys in the water despite the presence of two very capable-looking lifeguards. I worried NOT because they have Down syndrome but because they're 4-year-olds who don't swim all that well... And because there's TWO of them and only ONE of me! But, they listened well and played in belly-button-deep water staying safely near Mommy's legs. Yes, they drank some lake water... just like I did when I played in this very lake as a 4-year-old... Just like "normal" kids. And, they screamed and splashed and watched the fishies swimming around their toes... Just like their mama did 42 years ago and for many years since. On the way out, we stopped at the snack shack and ate our ice-cream on the steps -- Like I used to do when I was a kid! What a picturesque summer, family vacation scene... devoid of even a hint of "special" needs.

Saturday morning, we packed the extended clan into 2 mini vans... off to see the oldest colonial parade in the United States. Fife and Drum Corps from all over the US come to participate in this 3-hour-long parade. Though the occasional musket- and cannon-fire were a bit loud for all of the kids, every one marched to the drum beat and applauded the passing paraders. Back at the house-on-the-hill, we had a big family-and-friends barbecue in the post-Muster tradition. I'd say it was all rest and relaxation but the truth is, my cousin's house is bordered on one side by a 30'-50' drop-off to a pond and waterfall, in front by a 2-story-high stone wall drop-off to the garage below (no fences or guard rails) and on every other side is woods... Woods riddled with poison ivy and ticks (2 towns from Old Lyme, Connecticut where Lyme disease was first discovered and named). I know I sound totally paranoid but it's a potentially dangerous spot for any kid. So NO, it was not very relaxing. I was counting kids from one end of the property to the other, My one-two-three and then my cousin's one-two-three-four... OK, all accounted for. With 10 seconds of peace before I'd start counting again. I cannot imagine how my mother (5 kids) and Aunt (10 kids) did it. I was in a constant state of worry that one of my children (or hers) would wander off either drop off or into the woods. Not relaxing... but totally and 100% "normal" in the normal sense of the word. I was a tad relieved when I finally saw their little eyes droop and the mouths stretch wide open in a hippo-sized yawn. It was nap-time -- code word for "hit the road" so the boys would sleep the whole way home.

Two and a half hours later, we backed into the driveway and when I shut off the car, my well-rested boys stirred, looked around and excitedly said, "HOME!!!" My husband came out to meet us as the boys ran to him yelling, "DADDY!!!" A beautiful, special, normal welcome-home scene for a beautiful, special, normal family!

Perhaps someday that word -- NORMAL -- won't mean what it has come to mean for so many of us with "SPECIAL" kids. The sort of exclusionary disclaimer it's become! Hopefully, someday we can get back to it's old meaning of "business as usual" and the "status quo". I don't mean I wish to get back to a life without my special, or "special", kids. I mean I'd like to get back to a life without those "special" meanings. The days when special was special and normal was normal... with no underlying connotations. I like the words -- and life -- better that way.