Simple Happiness

No posts last week because we were on “vacation” in Wilmington, NC. The quotation marks are to signify the status of Vacation for the kids, Endless Parenting Tasks for Matt and me. We had a lot of fun, except that David had a lingering tummy virus, and has not taken to the ocean any better than on our trip last year. Simon had a blast, on the beach, at the zoo, fishing on the pier … he is never going to stop talking about it, never.

Last Wednesday I had one of the greatest feelings I’ve ever experienced. Matt and Simon (and our friend Derek and his 2 kids) went to this Monkey Joe’s place, with all sorts of indoor bouncy castles and slides. I really didn’t think David would enjoy it enough to justify the price of admission (next year, I bet), and although I felt a little guilty about that, I’m so glad I didn’t take him in, because of what happened next.

He and I scooted a few doors down to the Harris Teeter, which has a small Starbucks café inside. I was a little apprehensive – David was getting fussy and sometimes those places don’t have anywhere to sit. There were several small tables at this one, but while we (I) ordered he was so grumpy I was afraid to try having him in the vicinity of a hot cup of coffee. But then the lady gave him some free juice, and that plus his regular snack of a cereal bar saved the day.

It’s a little hard to describe exactly how this was so great, because it’s such an ordinary happening, getting coffee. But my latte was extra-good, and once David settled down he seemed to enjoy himself. He looked at everyone who passed by, and he got lots of grins in return. He did great with his snack (no crumbs), didn’t offer to reach for my coffee, and did a couple of really good “please” signs (he’s picked that one up really quickly, only about a week) and even one “more, please.” He’s such a little delight, to everyone who sees and meets him. I remember looking at him several times and thinking, “I’m so glad he has Down syndrome.” That likely sounds odd to those of you who are not parents at all, or parents of “typically developing” or “neuro-typical” or whatever you want to use instead of “normal,” but … while of course we want people to see him as DAVID, not just as his diagnosis, and he is (much) more than his diagnosis, but wow, it’s in every single cell of his body and yeah, it is who he is. It affects how he hears and sees and learns and speaks. It affects the way his heart beats and the way his lungs work, and it’s the cause of his “short stubby fingers” and the extra space between his big toes and the toes next to them (he uses this to hold everything from crayons to small books).

There was a wonderful feeling of peace and calm, and I had one of my “it’s all going to be okay” moments, which have been few and far between of late, but this one was extra-long. Usually it’s only a few seconds, and by the time my brain really registers it, it’s gone. But this was … nice.

We had another lovely snuggly moment later at the beach, when David was busy being unhappy with sand, waves, and life in general. We’d tried holding him up on our waists while the waves hit our legs, dipping just his feet in the water, sitting him in the sand – you name it, it was disliked strongly by Mr. DM. At one point he was really crying hard and I had him standing on my lap, facing me with his arms around me and his head on my shoulder. I whispered over and over, “Don’t worry, I’m not going to let you go … I’m never going to let you go.” Part of that was literal – I would’ve sworn a blood oath that he’d never get so much as a bath again, if he’d just stop crying; but part of it was (a) overall parenting love/concern and (b) flashback to our time earlier, and my reluctance to ever let him out of my sight – to protect him from anything and everything bad in the world. And of course that’s impossible and not even (exactly) what I would want, but hey he’s only two so for right now, I’m okay saying, I’m never going to let him go. J

A less-blurry standing photo ...

David hanging out at Grandpa's 

Sy in the Surf

 Several of my pages (“Shiphrah/Puah,” “Exodus Things,” and “Selfish Scriptural Interpretation”) take Biblical passages that either (a) simply sound nice, like the Psalms, or (b) contain something I feel I can apply to our situation with David, without stretching it too far. In “Shiphrah/Puah” I talk about the “I drew him out of the water” verse in Exodus, and since I read that I’ve looked for a lot of passages having to do with water, the most recent being Moses parting the Red Sea. I read Exodus a lot, to find other stories about Moses. I’ve read a number of essays by parents or educators of children with developmental disabilities, and those that imbue such kids (especially those with Down syndrome) with some near-mystical, spiritual quality are almost always painfully hokey. Perhaps they have just never had my gift for words J, because I think I’m starting to see David Moses that way, a little. As if he is my guide, and as long as I stick with him everything will be okay (see above re: this feeling). He has changed our family and has changed my life, so much for the better. All the fear and fatigue we went through those first six months are repaid a million times over every time he makes one of his goofy faces or tackles his older brother in the middle of a tickle-fight. If he gets leukemia as a child or dementia in his 40s (he’s at risk for both) then yes, that is going to suck. And the first time some kid calls him a “retard” I will likely end up incarcerated (simple or aggravated assault, depending on how big of a jerk they are), though I would hope just for a short time. But right this instant, YES, I am so glad he has Down syndrome.