When My Family Taught Me the Importance of Sitting Down As a Parent With Chronic Illness

My 7-year-old was telling us both not to move. She had my cell phone in her hands, and was taking a picture of us. She didn’t like the first two pictures she took and looked disgusted with them. She walked over to the recliner chair where I was sitting with my feet up and looked at the 70 pounds of white fur sitting on top of me and said dryly, “Look at me. Don’t move. Make that face — you know the one I mean…” and backed up slowly. I was afraid to laugh, move or talk because I wasn’t 100% certain, but I am sure these two understood each other. After all, he was her service dog. Data, a 4-year-old Goldendoodle, was my 7-year-old’s service dog since he was11 months old. They’re quite a team. She is on the spectrum. They’re both in the 1st grade together. He’s learned to detect her seizures and alert for her ear infections as she’s on her sixth set of ear tubes. I have written about them before. What I did not intend on writing about was myself.

At 43, the divorced mom of two daughters under the age of 9, I have been diagnosed with an autoimmune disorder. Along with this comes a handful of “not fun” things. Throw in taking care of a child with a disability, well, things can get a bit complicated. Once able to do a lot of things, I am now very winded and tired. I have lost a lot of weight. I had two heart procedures. I struggle with Raynaud’s syndrome, esophagus dysmotility, gastritis, fatigue, migraines, rashes, premature ventricular contractions (PVCs), brain fog, irritable bowel syndrome. It feels like a mess! I have a little device that keeps “watch” on me and my heart rhythm now. It’s very a high-tech “Beam me up Scotty” type of device. I find myself hearing things like, “It has a 3-year battery life” at appointments or I will say, “My diarrhea wasn’t that bad this month.” So attractive, right?

There are days I find myself nodding off once I allow myself to actually sit down, because I find if I keep moving, it’s better. My Raynaud’s is so severe and incapacitating that my fingers turn blue and white. They hurt so badly, I shiver involuntarily. I can become consumed by it. I can’t think of anything else. I am sure it’s odd to people. But until you live it, you just can’t get it. I will wear my hat or mittens around the house.

My list of diagnosis codes from doctors is huge. I find myself annoyed by it all and I don’t really want to go through it with some people, as they don’t really understand or want to understand it since I “look normal.” “Normal” to some is up, walking and talking. I don’t have the energy to debate it. It is what it is. I just can’t.

Explaining undifferentiated connective tissue disease to people is complicated, as is saying my “platelets are elevated” or “I am anemic right now.” It’s difficult to tell others you have a disease where your body is mistakenly attacking its own tissues. It’s hard to comprehend. The prognosis is often dependent on whether or not the disease is systemic and the quality of treatment(s) patients receive.

This has been my “beginner’s year” and it’s been a roller coaster ride to say the very least. On this picture day with my daughter and her service dog, I did something I rarely do — I sat down because of a migraine. (The last time I had a migraine that felt this bad was after my cardiac ablation in November – but I am pretty sure nothing will ever top that one!) I took my migraine medication and it didn’t work. I was making my squinty-ouch-face and I knew I wasn’t going to be “any good” to anyone. So I parked it, so to speak. I am always telling my kids to rest when they’re sick, yet I don’t do it when they’re home — ever. I am in constant motion.

Well, a funny thing happened when I “parked it” — all 70 pounds of Data doodle climbed on top of me on the recliner chair on my lap.  He has never done that before, where literally all of him was on my lap on the recliner, as if he was a lap dog. He just sat there. He sniffed and licked my forehead and stared at me. I started laughing, realizing I wasn’t going anywhere. Then my 7-year-old came in and that was where we started off. Our dog was putting me in my place. What my daughter was amazed. Before she asked for my cell phone to take a picture, she said the reason she really wanted one (other than it being so cute) was, “Mom is actually sitting down!”

Lesson learned. I need to practice what I preach.

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Getty Images photo via Wavebreakmedia