The last few weeks have been really tough for us. I know that for some people it is sort of a badge of honor to talk about how busy they are. I don’t feel like I need people to ooh and ah about how awesome we are as a family, and I know that there are people out there who are going through much tougher trials than ours, but I also think it’s OK to state that April was a rough month for us. I have never had my calendar so completely stacked with meetings — both for work and for school. And Brain Balance, while awesome, seems to be getting tougher.
I know that most of my posts on this blog have been about how everything is sailing along miraculously. I think that part of the reason I haven’t written for the past couple of weeks is that everything is NOT sailing along anymore. Anahí continues to make great strides in some areas, but in others she seems to be stuck still or even sliding backwards. She used to stick everything in her mouth, then when we started Brain Balance she stopped, and now she’s doing it again. Her speech is much clearer at times, but then she will slip back into her old echolalic ways. She is still socially pretty withdrawn. She has started throwing huge tantrums.
Kimball has also started to fall back into some of his old habits. The weather has been pretty windy and cold lately and it’s been tough to get the kids outside. It seems like every time we turn around Kimball is engaged in some activity that doesn’t help him — spinning the wheels on the stroller and staring at them, or lining up his cars, or playing “crane” with any stick attached to a string, or laying on the floor watching my feet on the treadmill. It’s really tough to get him to snap out of it sometimes.
All of this, combined with the rigorous diet and the exercises and the thrice-weekly trips to St. George, adds up to a lot of stress at home.
Lately I’ve started playing my guitar and singing to the kids in the night to try to wind us all down. I’m not really great at it, but it’s very relaxing for all of us. I don’t know what got into me, but the other night I started remembering some of the old Garth Brooks songs that I loved when I was a kid. So I started trying to pluck out the chords to one of my favorites: “The Dance.”
I’ve heard this song a million times, but I had never thought of it in conjunction with being a parent of special needs kids. Heck, I think it’s worth thinking about even with my “neuro-typical” kids. What if, I thought, someone had sat me down eight years ago and explained to me the details of the pain that I would feel in my life because of my children? They would have told me about the stress involved combining autism with school and parenting and marriage. What if, furthermore, they had given me an opportunity to avoid all of that pain? This is just a thought experiment for me. I’m not talking about abortion. I’m talking about a trade. “You can have children with autism, or you can have children without autism.” I like to think that I would have been very noble and said “I want the children with autism,” but I’m pretty sure if given the choice I and most other parents would choose the second.
I love the honesty in “The Dance.” I am glad that when Betty and I got married and started our family there was nobody hanging around waiting to tell me how it all would end. It’s like the song says: “I could have missed the pain, but I’d have had to miss the dance.”
Is life as a parent of kids with autism hard? You bet it is. Is the Brain Balance program hard? Absolutely. But so is parenting in general. So is LIFE.
I recently changed the desktop image on all of my devices to this.
It’s a panel from Joss Whedon and John Cassaday’s Astonishing X-Men. In this scene, Kitty Pryde is talking to Colossus and she says:
Everything is so fragile. There’s so much conflict, so much pain…you keep waiting for the dust to settle and then you realize it; the dust is your life going on. If happy comes along – that weird unbearable delight that’s actual happy – I think you have to grab it while you can. You take what you can get, ’cause it’s here, and then…gone. (Issue 22)
Life is tough, but it is also beautiful. My kids bring and joy to my life not in spite of but because of their unique qualities. This image reminds me every time I look at one of my devices that life is short. The music is playing. It's time to dance.