When I Feel I've Given My Child the 'Raw Deal' of Having a Sick Mom

I failed this week. Not necessarily by the definition of what non-family members expect from me, but according to my almost 7-year old’s definition (and by proxy, my own in a way), I sure did. And I failed big.

One of my band directors used to tell us that if we were going to mess up, we might as well do it big — make it grand, and I wish that carried over into more areas of adult life. Miss a work deadline? Apologize and dance it out. Forget to pay a bill? Pay it, straighten your line, and just keep marching forward. Too sick to go out with friends? Take a rain check and listen to your favorite playlist that would have been on in the bar. Too sick play with your kid? Now that’s a time-stopping, record destroying needle scratch.

I had an unexpected flare-up of symptoms this week that became unbearable within a matter of hours. It was one of those “drop the rest of the next few days and retreat to bed,” pain at a nine – and all of the snowballing symptoms, debating about whether you should call 911 kind of experiences that leaves you with a sharp reminder that a couple of good weeks doesn’t mean you’re not vulnerable. And although my daughter is about as well-versed in my condition as a kid her age can be, she’s still very much “almost 7.” I was propped in a recliner somewhere between coherent and incoherent, doing my best to smile for her, and she asked me to get up and play with her. I whispered that I couldn’t. She asked again, loudly this time, “Mom, pleeeeaaaase play with me!” And I had to say no. In that moment, she gave me the most heart wrenching look — sad eyes and an angry frown — and the tears started. And then came the real knife to my hear, “I hate it when your body doesn’t work right! It makes you not want to play with me!”

“Not want to play with me.”

Record destroying needle scratch.

We eventually worked out a compromise by snuggling and watching a movie together, but that didn’t alleviate her disappointment in not riding bikes and playing in the sprinkler together. She did do those things on her own eventually, but I felt like it wasn’t the same for her — she wanted some specific momma time, she didn’t get it right when she wanted it, and I spent the rest of the day beating myself up over disappointing her so much, and over “giving” my only child the raw deal of having a sick mom. (We’ll get to misplaced responsibility in a second.)

So let’s pause here for a moment: Rationally, we all know that disappointment and adaptation are facts of life, and that learning to deal with them is a life skill. We also know that no one with a chronic or life threatening illness “gives” anyone in their families a raw deal. It’s a circumstance of life — a genetic inevitability — and not something that we have any control over.

But back on the skipping, scratched record again, the emotional tidal wave of fear, guilt, sadness, and misplaced responsibility rolls over you, and you think, “I just made my child hurt.” The reality, though, is I didn’t make her hurt, but that is something difficult to rationalize in the moment. Parenting is a bundle of love, joy, pride, stress, and responsibility all rolled into one, and we put unbelievable expectations on ourselves, whether we have a chronic illness or not.

What is important to remember is that parents are never expected to be perfect, we will never be perfect, and neither were our parents. (And we turned out fine! How do we somehow forget this in the moment?) Most importantly, parents have needs too, and sometimes, those needs have to come first. If I don’t allow myself to rest and heal when I’m flaring, I will only get worse. If I don’t practice self-care, I won’t be as equipped to be physically and emotionally present for my daughter. Sometimes I have to put myself first, and in big ways if I’m going to be as present for her as I can be in the long term. But I will never be perfect. And that’s a good thing.

So this is not the first time that I’ve disappointed my daughter, and it won’t be the last. This is also not the first time that I have asked my daughter to adapt in big and small ways, and it won’t be the last. She’s going to have to adapt to my changing physical condition as we both get older, and in that process, she’s learning how to adapt to everything else that life is eventually going to throw at her, too. When we exercise self-care as parents, we teach our kids how to think for themselves, how to change when it is warranted (and how to know when change is needed), and most of all, that they can handle what life throws at them, and that they can and should practice self-care too. It’s the kind of agency that will serve them their whole lives.

As awful as it looks on the surface, disappointment can be a positive force in our lives and in our kids’ lives. It’s a teachable moment — for them and for ourselves. So since my own process of practicing self-care has been a two steps forward, one step back experience as I was reminded this week, I’ve created a litmus test for myself. When I start to feel guilty or afraid in moments of parenting self-care, I’m going to stop and ask myself, “Does she know she’s loved?” and, “Is this teaching her to be independent and to adapt?” 99.9 percent of the time, the answer will be an immediate yes. And with that “yes,” I’m going to have to remind myself to lovingly let her adapt. That this is helping her big picture, even if the snapshot is not what she anticipated in the moment.

Did I really fail this week, then? Yes and no. Maybe a little in beating myself up over doing something healthy, but not in taking care of myself, and not in creating teachable moments for my daughter.

Getty Image by LightFieldStudios