Momming With Chronic Illness :: When Sick Gets Real


None of us likes to admit when we’re not 100%. I’m working on this. Taking baby steps. Here we go. Sometimes my genetic disorder gets in the way of being all the mom I can be. It made becoming a parent a real you-know-what. And now that I actually do have three healthy, active children, I often have a devil of a time keeping up with them and getting to all my doctor appointments. Bringing those boys isn’t an option. I’ve tried. They get rude and don’t know how to act. So arrangements must be made. I’ve got reliable child care now and a few tricks up my sleeve for keeping small folks safe and sound when dog-tired, so I think I’m ready to discuss if you are.

One of the biggest challenges moms with chronic illness can face involves finding your place in the family and perhaps redefining that role. Moms on t.v. are forces of nature, in constant motion. They cook. They clean. They plan fun family adventures in which cherished memories are made. Think June Cleaver. But if you’re under the weather, that’s not happening. You might need to pace yourself, sneak a nap here and there. You may not even be able to pick your kid(s) up. Forget hauling them to the park. I have been there, Mamas. When I wasn’t able to pick my babies up, sometimes I just had to lie down next to them and pet them, like puppies. They seemed fine with it. Just make it work and don’t beat yourself up. All they remember is the love, so stay flexible about what time together as a family will look like.

Now that my boys are preschoolers, I try to stay connected with them by incorporating innovative sick day games such as “Hibernating Bear” and “Sleeping Beauty”. Perhaps you note a theme? These games all involve me lying on the couch under a blanket and the kids kissing me until I “wake up”. Everyone’s deliriously happy and bonding without Mama getting run ragged. When I do feel good, I race the kids down hallways. When I don’t, the kids run to the “finish line” and come back to me for high fives. It’s taken a little creative, positive thinking but I’m here, present, involved. They know I love them … just perhaps not enough to break a sweat or pick their stuff up off the floors. I kid. Kinda. 

On this note, I would like to mention a major perk of momming with chronic illness. It makes for self-reliant human beings. My boys were dressing themselves, brushing their own teeth, etc. early on because it wore me out! I had to pass that burden on ASAP. You’ll be surprised what your kid can do! The boys now help set the table for dinner, bring dirty dishes to the sink, and take their clothes to the washing machine. Do they do this without complaining? NO. Does this result in a dryer full of Micro Machines? YES. There may even be mountains of sparkling clean gravel in my laundry room because four year olds don’t check pockets. I can live with that. They’re developing good attitudes about pitching in (one hopes!), and that’s probably more important.

Another good thing that comes from momming with chronic illness is that partners often have to pitch in, perhaps more so than usual. Traditional gender roles don’t apply when Mama’s not well. And that, my friends, is a beautiful thing. My boys get to see their strong, handsome daddy sweeping the floor each night like a boss. While I’d like to think that my genetic disorder is in some small part helping smash the patriarchy, at bare minimum, my sons’ future partners will probably owe it a politely worded thank-you note.

Finally, moms with chronic illness can sometimes fret about missing out on time with kids due to hospitalization or other medical treatment. Lord knows we like to torture ourselves unnecessarily over this. In case no one has mentioned it yet, kids are very forgiving creatures. It will be ok. Absence may even make the heart grow fonder. Have you ever noticed how kids are sooo glad to see you when you get home? I spent almost two weeks in the hospital for surgery, and mine haven’t held that against me yet. Of course, they are probably saving this guilt trip up for new tablets, but I digress.

Sometimes sick gets real, Mamas.

Please share your coping strategies and thoughts below! 😉


  1. Dori wrote this–always by necessity, she has been determined, strong and a trooper. She was a little girl with a big attitude, which (as her mom) I encouraged and admired, even still (thus the FB blowouts between us bother other people more than us). Her individuality is a source of pride (and yes irritation sometimes when I KNOW I am right) to me. I feel her heart in my heart, and know from her first “hello” when things are going south. Having a daughter who has had to struggle more than others just to have a “normal” life …who then far surpassed “just normal” a long time ago makes me appreciate and love her even more. Grateful for every day, Dori Whitehead Pekmezi.

  2. You are amazing. Simply amazing. And don’t worry – we all have that sparkling clean pile of gravel in our laundry rooms. 🙂

  3. My 3 year old son has a genetic disorder, Digeorge Syndrome (22q11.2 deletion syndrome). I hope he too finds the strength and determination Dori has as he gets older and grown. We have began a nonprofit state organization, 22q Alabama. Thank you Dori for sharing your story.

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