When I Miss Events in My Kids' Lives as a Chronically Ill Mom

I’m headed to my son’s college graduation at Clemson in South Carolina. His birthday falls on Mother’s Day, just as it did when he was born 22 years ago.

What a great reason to miss Mother’s Day brunch back then. What a treat to be looking forward to sharing it now.

Even though I’m still struggling with the disabling illness that felled me when he was in high school, I’m better. And I’m so grateful to be able to enjoy this big triple-header.

But it’s bittersweet.

Here’s the bitter: Everything I have missed in the lives of both my kids. No making wonderful mom-kid memories that would stay with us for a lifetime.

Housebound and often bedridden, I was too sick to go even once to my daughter’s university just two hours away to take her out for pizza with her new friends.

Four years later when she graduated, I was no longer always housebound, but I was still extremely ill. I hid in the bathroom and sobbed several times that weekend in debilitating pain, then did my best to put on my game face.

Then I pushed hard to go watch her walk down the Lawn at the University of Virginia, my alma mater. I remember it felt like the effort was maybe going to kill me — but that was one moment I was not going to miss.

Meanwhile, my son was in high school. Often I wasn’t able to get groceries or stand up long enough to cook his favorite meals. My brain was so scrambled by Lyme disease I couldn’t help him with his college essays. Me, the writer and editor who could no longer think.

So many once-in-a-lifetime occasions slipped by like breathtakingly colorful toy sailboats floating past on a river, too far away for me to touch.

When my son came home from school, I’d be in my usual spot on one red sofa. After his homework, he’d throw himself down on the other, and we’d have a chat or maybe watch some TV.

His company was comforting. But I remember with horror the day he suggested I’d feel better if I “just did more.” It’s something people often say to the chronically ill.

I lost it, poor kid.

I was yelling and crying all at once, saying something like, “Do you think I like living on this sofa? Look at the middle cushion, all crushed from my butt because I’m lying there all the time!”

“When I get well, I’m going to take this f-ing thing out in the backyard and set it on fire!

Not my proudest moment as a mom. As mothers, we don’t want our kids to feel our pain. Yet — don’t they need to know real emotion?

The worst wasn’t my own suffering. It was the loss for my kids, missing out on a mother who was fun and creative and active. Who could give the support teenagers need so much.

That wasn’t my fault, yet I feel it is heartbreakingly, unforgivably awful. They must have felt so alone.

I’ve grieved for us, and for all the families who have missed out on events big and small because of chronic illness, pain, fatigue, or depression. We’ll never get those times back.

But here’s the sweet part: Treatment is working, and I can do some things on better days. I’m coping pretty well now.

My kids have given me such great love, my son making me laugh, my daughter calling every day when I was in the thick of it.

And the losses have taught me a thing or two.

I’ve learned to appreciate even a scrap of time with them, and to be excited about their futures instead of wallowing in grief about the past. I’ve wasted far too much time wishing for “more.” Now I’ve learned to be grateful for “enough.”

And I’ve learned to accept help. The first time I had to use a wheelchair at the airport, I wept. Now I’m simply glad for the fabulous assistance today that makes this trip possible.

I know I’ll be smiling and relaxed in the graduation photos this time around.

I’ll be able to enjoy celebrating his birthday and Mother’s Day along with graduation. And in my heart, I’ll also be celebrating a fourth event properly: my daughter’s college graduation. Three years after the fact, better late than never.

Finally, I’m becoming the mom I used to be when they were little. I’ve found that encouraging steps toward recovery and a lot of learning make it possible to take the bitter with the sweet.

I’m in a new place and fervently hope other moms in my situation find their way here to such sweet emotions­­. I can’t think of a better Mother’s Day gift.

Follow this journey on LifeLoveLyme.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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