Why It’s Hard to Believe My Daughter Is Chronically Ill

My child is chronically ill. At least, that’s the term doctors have been using. I’ve tried saying it out loud a few times, but it often feels like a lie.

When I use the term chronically ill, I feel chronically overdramatic. She’s fine, I tell myself. Just look at her dancing to Taylor Swift in the living room mirror! Look at how she lined up three chairs and scaled the kitchen counter to get a biscuit for the dog while I tried to use the bathroom. She’s fine!

And she is fine. For a week or two or maybe even three if we’re really, really lucky. And then she’s not.

It starts slow. She has a quiet day. Our ball of energy is missing. She wants to snuggle everyone and give kisses. She doesn’t want dinner unless it’s ice cream. Around the room she goes, hugging brother, sister, Mommy and Daddy. She looks us in the eye and gives us her biggest smile. Kisses for everyone. Her siblings think it’s so cute. It’s cute, except that it’s actually not because it means things are about to get really bad. The lovey-dovey behavior is her hurting body’s last call for attention. It always feels like a bon voyage from the child I know as she checks out of normal toddlerhood and enters into one of her episodes for the next few days.

She’ll start throwing up within 24 hours of all the hugs. Cyclic vomiting syndrome people call it emesis. I guess emesis is the professional term for losing one’s lunch. It’s actually a lot more than losing one’s lunch, it’s losing every single ounce of fluid in your stomach over and over again until all that is left is green bile. And still the bile will come.

We’ll spend the next few days changing her clothes and ours, the sheets and the couch covers. We’ll clear our schedules for the next few days. We’ll pace the living room with her for hours at a time as she writhes around in pain, exhausted but unable to sleep.

We’ll pray our favorite babysitter can make it or that grandma can drive up from Virginia so we don’t lose our jobs. We’ll try to trick her into drinking Gatorade or Pedialyte or anything at all. We’ll start to go stir crazy. We’ll start to bicker with each other. We’ll worry constantly. Is her diaper wet? Is she making tears? How are we going to afford another hospital bill? Our kids will worry constantly. Is this going to last forever? Is she going to die?

After three or four days, it stops. She starts drinking and then eating. Her diapers are wet again. She smiles a little. She wants to play with her blocks. After a day of regaining her strength, she climbs into the windowsill and gets scolded. She laughs and darts down the hallway in hot pursuit of a toilet paper roll she can unravel. She’s happy. She’s healthy. She’s back. For the next week or so anyway.

Is my child chronically ill? She fits the description, I guess. She does indeed have a medical condition or illness with long duration or frequent reoccurrence. I don’t know. It’s just hard to believe she’s really chronically ill when you’re in the middle of a game of hide-and-seek.

Follow this journey on No Bohn’s About It.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. 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.