As a full-time, single mother to a son with Duchenne Muscular Dystrophy, Camp Promise has been the only answer to respite care that my son and I both desperately need. For four days in a row, once a year Zak gets to be free to be himself and I, I get to be anything besides a caregiver.
The lead-up to camp starts with a countdown. 360 days. Yes, literally from the moment I load up the van from camp one summer, the clock starts ticking to the following summer. Zak begins thinking about who he might bunk with the next year, and I start fantasizing about the next place I will jet off to and discover for the first time.
“Yes, literally from the moment I load up the van from camp one summer, the clock is starts ticking to the following summer.”
We both eagerly anticipate the arrival of the email in the late Fall telling us the dates of the following year’s Camp Promise-Rockies. Early spring brings the camper applications, and we are one step closer to respite. It includes the standard request for a yearly physical, doctor signatures, shot records, and a list of medications and adaptive devices along with waivers. It also includes the personal side that makes this camp so special. Camp Promise inquires about Zak’s likes and dislikes, his preference for his counselor (there is a one-to-one ratio), and the activities he most enjoyed the previous year. The final step on that side of things is a phone call; it is an actual “Congratulations, you’re accepted! Now, how can we make this an amazing week for you?” phone call. This is key to showing that Camp Promise really cares about what they do.
“With a little elbow grease, I Tetris the heck out of the van, leaving a small pocket to fit Zak, and we head off to camp.”
On the home front, the preparation is not so much clerical as it is a mad dash to make sure that everything and everyone gets to camp and home in one piece. It starts with pulling the suitcases out two weeks before the big escape, airing them out from nearly a year stored in the garage, before packing them full again: shirts, jackets, socks, pants, toothbrush and charger, soap, shampoo, etc. The real challenge is all of the medical stuff that also goes along for the ride: a sling for the lift, the cough assist, the AVAP machine, the braces, the charger for the wheelchair, the pressure relieving mattress, the medications, the 1,943 extra pillows, and the list goes on. Most items have to be packed the day we drive to camp because they are still in use up until the eleventh hour. With a little elbow grease, I Tetris the heck out of the van, leaving a small pocket to fit Zak, and we head off to camp.
I used to worry incessantly about leaving Zak for a short week at camp. Now, I cannot get out of there quick enough. Four days to myself. No one to roll in bed two to five times a night. No one to feed every bite to. No one to live every breath for. I do it because I love him with every bone in my body, but I am still an individual with a zest for freedom. This past summer, I fulfilled my dream of seeing New York City. I saw it all. I was in the City fifteen hour hours a day, and slept through the night long for three nights in a row! I rode a bike in the streets of the Big Apple, saw a play on Broadway, visited the Statue of Liberty, ate at a local ma and pa Bavarian restaurant, rode the subway…I was a New Yorker for a few days. The city embraced me in a way I could have never believed possible. There is nothing like a run in Central Park to trigger a reset button. I could have stayed away forever, yet when I returned, I could not wait to be Mom again. It is true; absence makes the heart grow fonder.
“There is nothing like a run in Central Park to trigger a reset button. I could have stayed away forever, yet when I returned, I could not wait to be Mom again. ”
The best part of respite care is coming back to an exhausted son who talks my ear off the entire hour and a half ride home. He tells me about his entire week. I do not hear stories about feeling like an outcast or being stared at. I hear stories about his days. He talks about getting to know the other guys better. He talks about the counselors making it the best week ever and the general debauchery that takes place. And I know that it is all safe and healthy and done out of love for these guys. Duchenne takes the fun out of most days when medical needs outweigh the normalcy of our lives, but Camp Promise puts the fun back at the forefront. It is quality that counts especially when time is not on your side.
Respite care. All caregivers need it. More importantly, these guys need a place to get away from it all.