I went camping this weekend! The whole crew got out there: Zeke, Dylan, and I (and our dog Lexi), with my sister Lindsay, her husband Tom, and their two boys Griffin and Sully.


Growing up in Vermont, camping was a regular summer activity that I have really fond memories of. I remember going to a small island in Lake Champlain as a kid, sleeping in the lean-to, and enjoying all of the classic camping clichés: campfires, s’mores, swimming, waking up to a raccoon in our lean-to because we left our trash out.


Let’s just say the mechanics of camping are a bit tougher in a wheelchair. But these are all great memories that I want Dylan to have! We have talked about trying to figure out how to camp for a few years and this year Zeke and I were determined to make it happened.


For someone in a wheelchair camping presents several issues. One ever-present consideration for someone with a spinal cord injury is potential skin issues. For most people camping means sleeping on a thin pad and the discomfort that comes with it. That’s part of the charm. But someone with an SCI can’t feel that discomfort, which can lead to pressure sores. We bought a big blow up mattress that we could blow up with an electronic pump from our car (yes, we’re talking car-camping…). This may not seem like “real” camping, but protecting my skin is so important and this works. We bought a big 6-person tent so we have our big air mattress but also have enough room for a travel crib for Dylan (and the dog bed). Dylan and Lexi were obviously going to come with us and having enough space for the whole family was huge.


Another challenge is having a bathroom that I can use. I can always go in the woods but that just presents some more challenges for someone in a wheelchair. The campsite we picked has an accessible restroom on the grounds so I could go use that. The bathroom even has a shower with a bench in it if I wanted to use that. Glamping!


We also wanted to find fun stuff to do during the day. The campsite was located right on a rail path that a lot of people bike. We brought my offroad handcycle, Zeke’s mountain bike, and the trailer for Dylan so we all could go. Sorry we didn’t get a picture! We were a pretty tough looking crew! We also went swimming in the little lake and canoeing around.


Maybe the biggest challenge was (as it often is) mobility. At one point during the weekend Dylan was climbing up into a folding chair and I knew exactly what was going to happen next. Call it a mother’s instinct. Zeke was doing something else and I watched in slow motion as Dylan climbed up into the chair, stood up, leaned over the back, and proceeded to faceplant on the hard ground. Tears, blood, and snot were the result, mostly hers but a bit of mine too. I get it, we can’t protect our kids from every mishap, but this was one I saw happening and I just couldn’t get to her quickly like I would have been able to if I wasn’t in a chair. It was definitely a frustrating moment for me and a realization that as she gets more mobile and agile I’m going to have to find new ways to make sure I can keep her safe. Within a few minutes of the fall she had moved on and was laughing. We’ll have a tough kid!


We only went for one night and even though it was pretty luxurious (with nice bathrooms close by, the car with us, and a giant air mattress) it was still camping! We made it work and I would do it again for sure!


Dylan Update:


We have a walker! Despite Zeke joking that I’m a bad role model for Dylan (which get’s a mixed response…), she is now walking all over the place! She still crawls sometimes but now uses walking as her primary mode of transport. She has also started talking a lot more. She says mama, dada, hi, bye bye, night night, ball, dog, eat, all done, and probably some more that I can’t think of. It’s been amazing to watch her words exploding! She is following direction more and obviously understanding a lot of what we are saying. She has definitely started to have times when she gets frustrated because she wants something and she can’t say what. I like to think we’ve been pretty good at figuring out what she needs or else we can distract her away from it pretty well! She is incredibly interactive and loves to be goofy with people or wave to random strangers as they walk by. It feels like she is at a time of huge developmental gains but maybe this is going to be our new normal. Either way I’m enjoying this time!