Chasing Our Own Kind of Independence on the Fourth of July

by ParentCo. June 30, 2017

A boy sitting in a whell chair listening music

For me, the Fourth of July requires a series of pep talks, deep breathing exercises, and yoga poses that are supposed to open your chi or balance the yin and the yang or whatever. I'd feng shui the house if I thought it'd make a difference. From an outsider's perspective, this holiday speaks all my love languages: grilling, swimming, setting things on fire. But because I'm not living in a Coca Cola ad, it's what's on the inside that counts. And inside our house, we're parenting a child with special needs who dreads this day more than any other. It's too hot, too loud, too exhausting, too technicolor. He cries and covers his head like he's expecting shrapnel every time a firework explodes. And it might as well be shrapnel, because it blows his life to bits. Our first Fourth was epic, in all the wrong ways. He was only a few months old and newly graduated from the NICU. For months, his soundtrack had included the instant beeps of the heartrate monitor and the vicious alarms when his oxygen dipped too low. One alarming siren song carried us back through the emergency room after we'd finally gotten him home. By the time Independence Day hit, we were ready for some freedom. We wanted and needed a healthy dose of good old American normal. We wanted it all – the charred hotdogs, the pool, the sun, and John Mellencamp urging us to "R.O.C.K. in the U.S.A." against a backdrop of fireworks. What we got was a kid who desperately wanted to be away from any and all forms of stimulus. He had a tracheotomy and was still learning to breathe. He struggled to drink what felt like thousands of gallons of milk I pumped and fought to bottle feed him. He just wanted to eat and sleep and be left alone. The day was too hot, 85 degrees by 8 a.m., and the grill didn't work – a fun fact we didn't figure out until half an hour past starving. When darkness finally settled, I was at DEFCON 2 approaching 1 and needed a margarita and sleep more than any firework show, so we skipped the hour-drive into the country that would take us to the party scene. In the years since, we've figured out a system of sorts…something to stem the barely contained chaos of the day. We bottle it up as best we can and dole it out in smaller doses, like leftover Halloween candy. We visit the pool at the crack of dawn when no one else is there so my son can achieve a bit of that Zen status that weightlessness brings. It's amazing what happens when he can be free of his wheelchair and move. Because he's breathing easier, we don't worry so much about smoke from the grill. Because we're not sleep-deprived, we remember to buy gas for it and actually get to eat the hot dogs. We consider it part of his feeding therapy. We take siestas during the hottest part of the day, like any sane person should. But we haven't conquered the fireworks. The jarring noise is too much, shaking the center of him. It's my unicorn, though, something I want him to learn to chase and embrace. So, we're trying something new this year. Headphones. A pair of Baby Beats is all I’m asking for this Fourth of July. If noise is the enemy, lure it in and tame it. He loves the lights, something we've verified by trailing every televised firework show from time zone to time zone on cable. Now we just need to make the live thing a little less…lively. I've engineered a Spotify playlist of all his favorite tunes and, come nightfall, we'll be rocking out to the Wiggles. It may not be Mellencamp, but if it carries him happily to the encore, we will have achieved another piece of the independence we've been chasing for him. And that's the freedom I'll be toasting with my margarita this year.



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