I wrote a week ago about my son's upcoming camp and how I hope, despite his condition, that he enjoys it as much as I used to enjoy school camps. You can read that post here, if you wish. Well, we went. And returned. A bit earlier than I expected, and while he enjoyed himself, he found it tiring. More tiring than I anticipated.
And this is where it is difficult. Because I see him everyday, so I forget that Duchenne muscular dystrophy (DMD) is a degenerative condition, and that each day his muscles are getting weaker. I forget that completing any task, for him, is 30% more difficult than for healthy children his age. I forget that steroids, which are the only line (albeit a poor line) of defence against a more rapid decline in his ability to walk make him put on weight. I forget that he likely has ASD as a result of the DMD and that neurodiversity means that he has a limit on how he interacts with people and how long he can remain away from his comfort zone (home).
Everyone had finished dinner just before 7pm on Thursday evening and his teachers announced the evening activities and I was wondering whether he would take part in the talent show again. I remembered that last year, he'd declined the talent show because he was tired, and that's okay. The teachers and I are striving to help him have a good time for as much of the camp as he can. So after the teachers had dismissed the students to prepare for the evening session, Dominic asked to go to the toilet. After he'd finished, he started crying and told me that he wanted to go home. He was at the end of his tether and had tried valiantly to keep up with his classmates, but it had all finally overwhelmed him and he'd had to draw a line.
Wednesday
The camp began on Wednesday with the first bus load of students arriving at the camp site about an hour and a half late. I'd been waiting for most of that time with the van and electric wheel chair (EWC) that we'd hired to trial. I was glad to see Dominic was on the bus that had arrived, because it turns out that the other bus overheated and the students on that one were stranded on the side of a freeway while they waited for another bus to be dispatched to pick them up. I know that if he had've been on that bus, he would've pulled the pin immediately and asked to go home then and there.
He was happy and in good spirits. It took me a while, but I convinced him to have a go in the EWC - he doesn't like using mobility aids in front of his friends because they make him look different. his is in his head, not something that the other students have put there by teasing him, or anything like that. I actually really like going on these camps because I can see, first-hand, just how great his peers are with him. I finally got him on the EWC and within two minutes of using it, he was struggling to move it through the soft loamy soil. The driving wheels were getting bogged, and because the chair was a rental, I was hesitant to use it if we were likely to destroy it with sand.
Dominic was happy to leave it, and we decided to make use of the beach wheel chair that we used the year prior. I checked with his teacher, and wouldn't you know it, this chair was in the trailer and stuck on the side of the road with the overheated bus! Plan C was to let him walk around and I'd carry his shower chair which he could use to sit on to provide his legs with rest. The only problem with this plan was that being stationary isn't the main problem - getting from one point to the other is the problem, but there wasn't really anything we could do. I was just glad that his teacher had placed him in the group that was remaining at the camp site for the afternoon activities.
The descent was always better than the ascent!
Still, the walking and the physical nature of the activities took it out of him, and he wanted to participate as best as he could, so he was already expending massive amounts of energy within the first couple of hours of being there. The second activity, in particular, got his attention. A bouldering wall, kind of like a rock-climbing wall, but on this one, the aim was to traverse from left to right, rather than climb up. He wanted to have, not one, but two shots of this! So, with my assistance, he was able to move a couple of meter along, and the little giggles I could hear coming from him made it all worthwhile, but for him, also very tiring.
After the activities had ended, those that were present were able to go and check out the dorms and get settled in for a while. Dominic chose a dorm with his friends and was happy with his bed selection. I had a room a few metres across from the dorm, and was within easy reach if he needed me for anything.
The other students arrived shortly after, but it wasn't until about 6pm that the luggage and the beach wheelchair arrived. I assembled it pretty much immediately and Dominic gratefully hopped in without so much as a peep of a protest - testament to how tired he was. The evening activity was a mini olympics with a variety of fun activities, and after that students were allowed to brush their teeth before getting into bed. After we'd brushed teeth, Dominic asked if he could sleep in my room, and I was happy for that to happen, especially if it gave him peace during the night. DMD makes sleeping difficult, yet it's vitally important so batteries can be recharged.
I think the writing was already on the wall, but I didn't see it. Despite all of the energy he burned through that afternoon, he was having fun, and I was there to help him participate as much as he wanted to.
Thursday
It was raining when we got up, and it persisted for most of the morning. It was nice and refreshing after a week of high-thirties (Celsius). Dominic's group had a big day scheduled - the morning session was a beach walk and tour of the area and the afternoon session was raft-making and fishing.
Having the beach wheelchair made this day much better. The morning session was really interesting and included a look at some seals and a trek through the sand dunes to look at some indigenous camp sites. Dominic loved the walk through the sand dunes, me not so much! I was pushing him the the wheelchair and the sand made it almost impossible in some places, but the thought of not letting my son miss out spurred me on.
The bus ride back to the camp site was a relief that gave me a chance to rest a bit, and the afternoon session was just as fun, with students dividing into groups for raft-building. Dominic was adamant from the outset, that he would be one of the students powering the craft when it was ready, so I lent a hand wherever I could, helping to secure lashings as much as possible and just generally giving the students advice, because I had no intention of getting into the water that afternoon. As long as the raft remained afloat, I'd be okay, but I've seen this kind of activity on a lot of school camps, and most of the time, the students end up in the drink. I wasn't too worried about Dominic getting wet, and the sections of the river they were going in was very shallow, but if he lost his footing, standing back up was an issue. His standing time is very slow, and his core isn't strong enough to keep him upright if the raft was to come apart or capsize.
Happily, the raft did remain lashed together and didn't capsize, however, after only a minute or so in the water, Dominic wasn't able to remain in a seated position, and he slowly lay on his back. He was okay, but I just needed to watch him because his head was getting very close to the water, and I was ready to go in as soon as the water hit his face, but he was able to keep himself above the water, and I remained dry, which was a win for everybody.
Laying down on the job! I taught him well!!
Fishing was great - carp are a problem here, a big problem. They're an introduced species, and have pretty much taken over the Murray River, so if you catch one, it's actually illegal to put it back, so the second part of the afternoon session was fishing for carp, and any that were caught were to be terminated. No one form this group caught one, so we didn't get to see how the kids would react to a fish being quickly introduced to the end of its life.
The small group packed up the area and headed back to the camp ground for some free time and to get themselves ready for dinner.
Hearing him cry and ask to go home - it was like a horse kicking me in the chest, because I realised for the first time in a while of how much of a bastard DMD is. I was reminded of how it is slowly sucking his strength and the integrity of his muscles. That it is robbing him of life.
We packed quickly that evening and I was sad for him, that he wasn't able to see the camp through to the end, but more than sad, I was proud. I was so proud that he'd made it through as much as he did. Thirty percent is a lot, and if he's expending that much more energy that the rest of the kids there each time they do something, then he's truely an amazing little boy.
Now that I've had a little over a day to reflect, I can pick many moments where I didn't realise at the time, but can see clearly now, where he struggled much more than he did last year. It's the first real reminder since we had the diagnosis that his body isn't growing as it should be. This year's round of annual check ups are due to start soon and I'm now concerned about the results we'll see. This will be the second year of tests since benchmarking, and last year nothing much had changed, but I'm not eager to begin these tests this year.
I'm not sure if I can keep watching what this condition is doing to my son. So I'm going to make a difference for these boys. I'm going to run a fundraiser this year to raise money to help them. I was originally planning on using it to use for research grants for a cure, but I'm thinking that now, maybe I'll use it for something else. Either an inclusive campsite or for research and development of a better mobility aid. Don't laugh, but I'm thinking of some sort of exoskeleton that will aid with standing and walking that can be used instead of a wheelchair. Or, if I can raise enough, all three.
Stay tuned - exciting stuff is coming.
Great to see he is having so much fun! I think it's great you took him there and that he's trying out difficult things! Great job!
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He definitely enjoyed himself despite the tiredness that quickly crept in. He was adamant that he was going to paddle on the raft and he enjoyed most of the other activities too.
This is such a touching post man.
There are not many people in this world who could do what you do with your son. Your love and dedication to giving him the best life possible shines through your photographs and thoughts, and is very apparent.
His joy is apparent as well during these moments. That three wheeler is super cool and it looked like he had a blast on that raft too!
I love how you think in ways to help people with this condition in the future as well, like with the exoskeleton idea. This is feasible with AI I think.
Hey, thanks for stopping by.
The wheelchair is great. I looked into getting one after his camp last year, but they’re pretty expensive, so we borrow this from another family. It has a heap of different attachments too, which make it super versatile.
It’s touted as a beach wheelchair, however, I’m yet to get it onto an actual beach. The dunes the photos were taken in are the closet we’ve got! The rear wheels in the photos mean when you take the chair into the water, it won’t float, and remain submerged. You can get these big white inflated ones, similar to the small front tyre and if these are on, it’ll float on the water. There’s also a ski attachment, but there’s not much call for that in Australia!
I’ve read about an exoskeleton-type device that’s being developed already, but that was over a year ago now, and I’m not sure how progress is going. If there enough support in a fundraiser, I’ll reach out to them and see what’s happening. I love the idea because it could benefit not just people with DMD, but potentially many who use wheelchairs due to other conditions. Plus, who wouldn’t want to look like a crazy cool superhero!!
Wow, my heart is on a roller coaster ride reading this story. At first I felt deep sadness for you both, then came the pride - in both of you and finally....hope! I hope and pray you accomplish all three of your your goals, it is such a worthy cause and your son has a true champion in you!
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Thanks so much for reading and for your comment. It means more than you’ll know. I’m glad that I was able to convey the experience in a way the brought emotions to those who read about it.
I think that watching him sit in the back of the hire vehicle in the electric wheel chair, really hit home, and got me thinking of all the times concepts from science fiction became reality. So why not in this instance too? If I can find people smarter than me to make it, I’ll raise money to pay for production and then give them away.
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You are so sweet and so he is your son!! It’s marvelous that you could encourage him to go to the camp and to do all those healthy activities. I’m sure he will never forget that experience. It’s also great that you were there taking care of him.
Thanks a lot for sharing! This will be an inspiration for many people!
Hey there! Thank you so much for reading and for your comment. I’m so very grateful that his school recognises the uniqueness of this situation and allows me to attend. Without their support, I (and my son) wouldn’t have been able to go.
I was a little sad for him at how quickly he got tired this year, but it’s more about him being included for whatever amount of time he can manage. So I have to make sure I see the positives more than the negatives, and they definitely outweigh the negatives.
Thanks for giving him a great time. You will always be his hero and just know he will never forget this. Wishing you all the best in reaching your goals.
Thanks for leaving your comment. I think it’s fair to say that he’s my hero. The way he stares down his struggles and never gives up are nothing short of inspirational.
As far as the goals go, I hope that they will be met and that the ideas behind them are successful in bringing joy to those who live with DMD.
It’s refreshing to see a father pay so much attention to his child and be present in their activities and reading this I can feel the level of understanding you both have.your son is so brave and I wish you both best of luck in your future endeavors
He’s very brave. I don’t often get glimpses of what he’s thinking, but I know that as he gets older, he struggles with not being able to keep up with his friends.
Thanks for sharing your thoughts here.
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Am proud of the love you showed your son,in deed you are a great dad
Thank you for being his great support system he deserves even the best.🥰
Thanks for your comment. He does deserve the best and hopefully I’m able to offer that. I know I fall short sometimes, but I’ll always give him 100% of my efforts.