Over 4th of July weekend Jon got a couple of phone calls from his friends. That weekend was pretty busy. But, phone calls for Jon to attend parties are rare; we almost never give up any opportunity for him to attend a party with his friends. We always try and make it work.
Jon usually hates to use his wheelchair for anything. But his friend that was hosting the 4th of July party lives near the park where the fireworks are shot off, and everyone at the party planned on walking over to the park. I heard Jon on the phone with his friend. “You want me to bring my wheelchair? How come? Oh we are going to walk to the park? OK, I’ll bring it. Will someone be able to push me to the park?” The conversation ended. Jon hung up and said “Mom, my friend is having a party for 4th of July, can I go, it’s Saturday”. I said “Jon, remember we got tickets to Watkins Glen to see Shea Holbrook race. You can go when we get back, what time does the party start?” Jon said 5 or 6. I said “Well ; the race will end sometime between 5:30 and 6pm.” “You can get to the party around 7:30 or 8:00, will that be too late?” Jon called his friend back. It was agreed that Jon would still attend the party .
Jon and I had a fun day at the races, but Jon was excited to be with his friends and celebrate the 4th of July. My husband dropped him off at the party and we waited for Jon’s call. It was midnight when he called to be picked up. Jon was tired came home and went straight to sleep.
The next morning I asked, “So, how was the party?”” Did you get over to see the fireworks?” Jon looked at me with a huge smile on his face and said “Yup, the party was good; the fireworks were awesome!” I said, “So, how did you get over to the park, did one of your friends push you?” Jon answered;, “Yup, one of the bigger guys pushed me.” “He hit a couple of divots in the grass and some bumps in the concrete.” ” Mom don’t worry it was all good. I had a blast.”
It was really hot that weekend, Jon got a phone call on Monday, to go to a pool party. Jon was looking forward to going, it was 95 degrees and he wanted to go swimming. I said “Jon do you know what kind of pool they have?” “”Is it above ground or in ground?” Mom, it’s above ground.” I said, “How you are you going to get in it”. Jon no longer can use stairs or ladders, so I was worried. Jon said “ Mom, I can figure it out with my friends, they will help me.” My husband dropped him off for the party. Jon called around 5 and asked if he could stay longer, he stayed another hour.
When he got home I asked him how he managed getting in and out the pool. He said that two of the bigger guys helped him in and out of the pool and he really enjoyed hanging out with his friends.
Jon is always telling me that I worry too much. As a Mom you want your kids to enjoy themselves and have a little independence. But has a Mom dealing with Duchenne you worry 10 times more and watch your child loose what little independence they have. While most kids at 16 have their drivers license and can borrow the car to hang out with their friends, Duchenne kids need the support of their parents more as they get older.
Jon once told me, “Mom you worry too much, I’m doing fine, but I agree it does suck having to rely on your parent’s for everything.” “I don’t really miss my friends normal, because my normal is not the same as everyone else’s”. My husband and I try and let Jon have as much independence as he can handle. It is a tough balancing act for all of us.