I didn't know if my heart was bursting or breaking

And can that happen at the same time?

It’s a typical summer scene. Your child goes to camp and comes home with a crush. But it’s not so typical when your child has a degenerative and fatal neuromuscular disorder.

Let me set the stage. When my son gets to go to sleep away camp, it’s a BIG deal. For him and for us.

For him, it’s rare. He has Duchenne Muscular Dystrophy, is in a power wheelchair full time, and needs support for all of his activities and personal care in a day or night.

Signing him up for summer camp is not something I can do on a whim.

But thankfully, there are some summer camps for boys with Duchenne and some for kids of all types of disabilities. (No lie, if I win the lotto, I am gifting all of these camps a wad of money! These people are angels in human bodies.) They gift these kids the week of a lifetime and we get some respite from caregiving. It’s a win-win.

And the scene at pickup is the same every time. He sobs and shakes because he is so sad to leave. And I mean he is sobbing! We are so thrilled he has had that much fun but at some point, we have to remind him that he does actually live with us and needs to leave 😂

But I get it. He has just had the experience of being with other kids who also struggle physically and/or cognitively, making him no different. He has just spent a week without his family so he feels as independent as he can be. He makes bonds, shares stories, dance nights, and gets to hang out in a way he never does at home where he has no friends coming over. And he participates in activities like swimming, canoeing, even archery!

It’s pretty much a dream week for him. And since he is getting older, the camps are ending as he ages out. Which makes the pick-up day sobbing even more intense.

So this year, he went to a camp for the last time because he will be past the age limit next year and we knew he would be a shaking bucket of tears when we picked him up.

What we didn’t anticipate was that he would also be crying because he had a new crush, a big one.

We didn’t get the whole story until after we left. But we learned it was one of the camp counselors. And he was definitely smitten. He wanted a phone, which he has never had, so he could text her and possibly a social media account so they could ‘follow’ each other.

He was giddy and even talking about going to the same college as her (in San Diego, mind you) and how much he loved hanging out with her.

❤️ My heart burst open literally watching him have emotions and feelings that we all want to have. A crush, a dream. He was hopeful. He felt excited. It all felt so, dare I say, typical and normal…

💔 But my son’s life is anything but typical and normal. And watching him hope for the normal shattered my heart. All of a sudden he was talking about wanting to go to college in San Diego and even thinking out how this could possibly work given he can’t do anything without us. He was talking about dating like it was no big deal.

The aside that this young woman likely thinks of him as a friend now that I know the backstory is not even my biggest heartbreak. Crushes happen and they aren’t always reciprocated.

But it’s not just that. It’s that he wants so badly to have a life where the things we take for granted are also available to him. He wants so badly to dream like you and I dream. As if it can possibly come true.

So in one simultaneous instant, my heart soared to watch him experience these ‘regular life’ hopes and wants. And as high as it soared, it also shattered as wide as I reminded myself these dreams were not available to him because of his cruel twist of genetic fate.

I literally didn’t know whether to smile or cry so I found myself doing both. I felt his giddiness along with my grief. I felt his excitement along with my deep sadness that my heart would not let me fully fantasize with him, because it was just too painful.

As the days after camp went on, we heard more and more about his new love. More about his excitement and dreams. I felt like my whole body was going to burst with this tense tug of war, waiting for my heart to finally settle on either sadness or Joy.

And it hasn’t. It has stayed in the middle.

Because that’s the human part of all of this.

My son’s life is not typical, normal, or even fair. But it is human. And he wishes it were different. He talks to us about how hard it is. Yet, he let his heart soar into this crush. He let himself dream of the possible.

So is it careless of me as a mother to not halt the delusion? Or is it more of an act of compassion to let his heart soar in the way he wants it to?

I won’t answer that here. What I do know is that if he can oscillate between his suffering and Joy, that may be the most typical thing a human can do. It may be the most normal part of life.

And no matter his condition or prognosis, maybe he is figuring out what is truly typical about all of us. We love and dream and we despair and grieve. Sometimes all in the same day.

Once again, I learn that the point is not always how to ‘navigate’ or manage my grief. But maybe it’s how to flow in and out of it with more ease and grace.

So today I will see him excited to check his texts and take long minutes to compose a sentence reply back. And I will know that he is just figuring out how to be human. And so am I.

As always, share any reflections in the comments. I love hearing from you and if your heart is in a tug of war of any kind. My favorite thing is watching you all respond to each other and hold space for the community. May we all feel more human, together.