Life with boys ...

Matt and I had a pretty eventful weekend. Friday was a fundraiser for Simon’s preschool; it was slow to start but ended up being a lot of fun, with a good turnout. Then Saturday was the Flip Flop Hop in Asheville, to raise money for the WNC Down Syndrome Alliance, specifically to assist families with sending their kids to summer camp. I hope people don't start thinking we have tons of money to give, 'cause we, uh, don't.

We didn’t realize this until we were almost there, but this was our first trip back to downtown Asheville since David came home from the NICU. We’ve been to Asheville a hundred times for appointments, but those have all been in the same medical park, about ½ mile off the interstate. We were not prepared for the emotional impact this had – driving up Biltmore Ave, there was a memory associated with nearly everything: there’s the ATM where Matt was on his cell phone with Pastor Randy, talking about baptizing David the day after he almost died; there’s the sign for Givens Estates where we stayed for awhile, there’s the Nature’s Pharmacy where I got the domperidone, there’s the Subway where Matt got lunch the day he was waiting for me to be discharged. Etc., etc. As I say, we did not anticipate the emotional whallop this packed – we were both pretty overwhelmed for awhile. I got a little teary thinking about how well David is doing now, rolling over and grinning all the time, and how distant that seemed during all those horrible weeks in the hospital.


The Hop ended up being a huge event; I’m not good at guessing these things but Matt & I agree there were about 250-300 people in attendance. I think only about four of them had Down syndrome, the rest were people on the Board, corporate sponsor-type folks, and I guess some other parents like us? We are now introduced as Joanna-and-Matt-their-son-has-Down-syndrome. The first performance of the night was a young man named Alex, who sang along to a taped version of the Black Eyed Peas song, “I’ve Got a Feeling.” He was a very enthusiastic singer, but it was really difficult for me to watch/hear – he has a pretty significant speech impairment, and he was basically kind of yelling into the microphone. I blinked back the tears for a minute or so, but then turned to Matt and we both cried a little. We were thankful for some fake palm trees that provided a little cover. When we talked about it later, I said it’s not really an embarassment factor that I’m worried about for David, it’s more just a general, you don’t want anything to hold your kid back from doing whatever they want to do, you know? I mean, Simon is perfectly physically healthy but is currently being tested for some behavioral issues; I don’t want there to be anything “wrong” with him either. … thinking about all the things that might hold David back was discouraging. There were a lot of other things, too, but going into each and every one would take about 10 pages, probably.

And of course I have since reframed this quite a bit – that David has Down syndrome, but we don’t yet know what challenges he (or for that matter, Simon) might face. He will have his own dreams and stuff he wants to do, and I’m guessing he is not going to feel any more “held back” than anyone else trying to achieve something. And Alex? He was having a blast up there on the stage, everyone was cheering like crazy, and hey, this is the perfect place for him to showcase his talent – a place of acceptance and caring, where people are forking over thousands of dollars to make sure kids like Alex can attend summer camp. … I am thinking of it differently now, but it was still hard at the time.

And Alex later demonstrated he is a much better dancer than either of us, so what do I know about anything?

Then a boy named Hunter participated in singing along with that Jimmy Buffet song, “It’s Five O’clock Somewhere.” He led us all in doing all the little hand motions, and chimed in on the chorus. I questioned the appropriateness of the song for a kid who appeared to be about 9 years old; Matt said that’s only twice as perfect as getting an adult to do it. We met Hunter and his mom later; I didn’t realize until then that since we found out David has Down syndrome, Hunter is the first person I’ve actually met who has it. He’s a nice kid and his mom is Chair or something of the Alliance, so I’m sure we’ll see them again sometime. I hope so, because the music was so loud I couldn’t make out anything either of them were saying.

Today I watched a documentary called Up Syndrome, filmed by the childhood neighbor/friend of this (at the time) 23-year-old man with Down syndrome, Rene. What I likes best about the movie was rather than interviewing his parents or teachers, or talking about how hard life is for Rene, it was just about him, and how much his life is like any other guy’s. He likes karate and doing daredevil-type bike tricks, playing basketball and going bowling, playing guitar and dreaming of being a highway patrol officer. I had a brief moment of, wow he’s still doing all this early-adolescent stuff at age 23. But then I thought hey, probably most 23 y.o. guys would love doing all this same stuff, they just don’t get to because they are offically responsible people. And how many other 23 y.o. guys get fired from their first job, break up with their girlfriend for some mysterious reason, and still live with their parents but are dying to move out? Probably a lot, right?

And oh my goodness, the funniest thing ever. Rene was being interviewed in a lovely park, sitting on a bench. He said, “I have Down syndrome. I don’t use a wheelchair, I can walk.” And he paused and I’m thinking, oh here comes the depth, whatever he says about human nature or disability or God is going to be worth keeping. What he did was … very deliberately lift his left leg, pass an enormous amount of gas, and then fan the odor toward the camera, saying, “here you go.” Awesome. Life with boys, right? You’re expecting or hoping for something with incredible meaning, and what you get is farting. Oh, well. I was right – it certainly was memorable.

So lots of things to digest from the last few days. Many thanks to Grandma Harriet and Aunt Tara for babysitting the boys so we could have 2 night out in a row (we’re now broke, so it’ll be Netflix and microwave popcorn for the next few months). And many thanks to Chad for the loan of the downtown condo on Saturday night – it is beautiful, just the right size, and only about 1 ½ blocks from the event. We had a great time, both nights.