Finding Joy in the Heartache
I recently had a two-hour conversation with a friend I haven’t talked to in too long. So much has happened in life since we talked last that just the question “What’s going on?” or “How are you?” felt like a daunting task to figure out where to start. We decided we would start conversations differently, “What doesn’t suck?”
So while I could unleash on all the things that are so hard right now, I will choose to bring up the things that don’t suck first:
Caleb and Dunky’s infectious smiles. We have so many days as parents filled with tears, but then we get one glance at our kids and are quickly reminded that they are happy and filled with joy.
1:1 time with each kid. Caleb and Dunky are the epitome of the phrase “you can’t live with them, you can’t live without them.” They fight a lot when they are together, but they also can play so nicely. Dan and I don’t often split up the kids, because then the other parent doesn’t get a break, so the kids are used to being together ALL THE TIME. So when this idea of me taking each kid separately to Florida was brought up, they were skeptical. But we did it and found so much joy in spending quality time with just one kid. For once, they got undivided attention from one of us. There was no yelling, fighting, screaming, melt downs, there was just beautiful and special time. Most importantly, the kids got to do what they wanted to do, not what the other person wanted. Dan and I would exchange pictures during this time and it was so on point. Caleb spent time playing school and teaching his minions math, while Dunky played in the rain, begged for starbucks everyday, ate ice cream and swam for hours.
Caleb’s play date. We have found the best school for Caleb. They have welcomed Caleb for exactly who he is and have embraced the Kasner family, while learning about Duchenne along the way. And Caleb had a play date….at a friends house…….without me there. That’s no big deal for most 7 year olds. But for Caleb, that’s a first. His face lit up when I told him his buddy wanted him to play. I never thought we would do it. Not because he wouldn’t be asked, but because Caleb’s body is so fragile and I always worry about this safety, I didn’t think I would feel comfortable. But this family is so kind, the friend is as nice as could be, the parents both have learned about Duchenne and they were willing to make it happen. So it did. I provided Caleb’s cliff notes, brought him over with some of his favorite stuffies and after a few hours I got to hear about the joy he experienced on a playdate without his helicopter mom.
Swimming. We were at a pool party with other families that have kids with Duchenne. We were fairly new to diagnosis. But I watched a boy with Duchenne get up out if his wheelchair, take a few steps and jump into the pool and swim, independently, with the biggest smile on his face. I was in awe and thought that…..I want that for my boys. So we’ve been doing just that, investing in swimming and it’s been so rewarding. We have gone from two boys that were afraid to put their toes in the water to two boys that would now choose the water over land.
So there are some things that don’t suck. But there are plenty of things that are hard right now, physically and emotionally. Duchenne is no joke. While we live in the moment, I still find it hard to not look at my kids and be slapped in the face with this disease. I share these hard things not so that you feel bad, but so that you can send love and prayers our way, in particular for Caleb. We always feels the love and it makes the difficult times a bit easier.
Caleb is going into surgery on Friday. His gait is so imbalanced that he was close to being off his feet but yet is still fairly strong. We will see if it buys Caleb time on his feet.
Caleb was advised to get 6 teeth pulled! Six! Is that even a thing? Oh and a lifetime max of $1,000 for orthodontia treatment. Is that even coverage? Does that even put one brace on one tooth?
Caleb is shopping for adaptive equipment to help with his mobility, I can barely say a wheelchair. I can barely admit he needs that. But we have started that process because we see Caleb struggle and we know he needs help. He currently uses his orange little jog stroller that swallows him up and is hard to get in and out of. I hope the freedom he feels with this new equipment will bring a smile to his face and a joy in his heart that takes the pain away from me.
Caleb needs wheels to help him be independent. I always thought I would be 100% prepared, emotionally and logistically for when this time comes. Nope, not one bit. We live in S Mpls and have multiple stairs to all 3 different entrances into our house.
Caleb has to go pee, ALL the time. So imagine every 30-ish minutes you have to go to the bathroom but yet getting there, maybe even the thought of getting there, is fatiguing. This has been such a struggle, more for us then him. We just carry around lots of extra clothes and never make him feel bad for what we know he can’t fully control.
Caleb’s disease is progressing. I see it when I look at him, I see it when I watch him toe walk on his right, I see it when Dunky gives him one little push and he falls to the ground, I see it when I watch him play outside and he can’t do things he used to be able to do, I hear it when he says, “Mommy, can you carry me to bed?”, I even feel it when I pick him up because his muscles in his armpits are weakening.
All of that with Caleb, meanwhile we watch Dunky’s stronger than normal body struggle through anxiety issues. But I believe in COVID blessings, because COVID allows Dunky to hang out all day, everyday, with the best kindergarten “teacher” he could ever have, his daddy. It would be remiss of me to not recognize how wonderful his “real” kindergarten teacher is, but Dan is right there with Dunky to help him through his day, every, single, day. It’s the most special bond and time they would never had together if it wasn’t for COVID.
So that is why I write, to put my feelings on my sleeve. To discuss the good and the stuff that sucks There is so much good, but Duchenne sucks. We could not do this alone, but together we can #kickduchenne.
Thanks for supporting Caleb, Dunky and our family. We love you!
