Managing motherhood and caregiving: Where is the beauty?
With 7 children, including 3 with DMD, my days roll one into one another
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My mind is spinning like the wheels on my son’s power wheelchair in the freshly fallen snow. You did not read that wrong, and it’s not a hypothetical. Here in Nebraska, it snowed this last week of March. It feels like a second winter.
As if the spring snow isn’t enough, life is going full speed here in the Vertin house. I have three sons — Max, 18, Rowen, 15, and Charlie, 13 — who live with Duchenne muscular dystrophy (DMD). They keep me busy. But I also have four other children: Lexi, 22, Chance, 16, Mary, 9, and Callie, 2, and they keep me hustling all the time, too.
I’m trying to think of just one thing that’s happening with my family this week to write about, but my brain is like a computer with too many tabs open. I can’t concentrate on just one thing long enough to write 600 words about it.
In my experience, however, that’s what motherhood is like. We’re the keepers of all the things, and we’re programmed to worry about all those things we’re keeping. And that’s where I am this week. If my brain is a computer, all my open tabs have slowed my processing speed.
What’s going on? It seems like just about everything! Here are the top five things consuming my brain energy this week.
Money
Duchenne is expensive. Even with the best insurance, we pay for plenty of things out of pocket, times three, and it adds up. I try to find ways to contribute financially, but it’s challenging as a full-time caregiver to three teenagers with DMD. And after being out of the workforce for so long, I’m not all that desirable on the market.
Pee
In my column last week, I mentioned that Max had started to exhibit symptoms of kidney stones: blood in his urine and sharp pains in his right side that wrapped around his back. He had an ultrasound, and we could see a stone, but there were signs that he may have passed it at that point.
But it’s not that easy. There’s much follow-up, and it involves a lot of pee. He has an appointment in the lab next week for a urine analysis, and the hospital is shipping him a kit to collect his pee for 24 hours. So yeah, pee is on my mind.
Arrhythmias and insurance snags
Rowen continues to experience a racing heartbeat that sometimes lasts long enough to make him vomit. His cardiologist is suspicious and thinks he has arrhythmia. His heart function is normal, but the doctor said that sometimes arrhythmia can occur before heart function changes.
We saw his cardiologist almost two weeks ago, and she sent us home with a Zio patch (like a Holter monitor). He wore it for a week, and we’re waiting for the results now. I hope it shows what’s going on so we can begin to manage it.
While I’m on Rowen, I’m struggling this week with his insurance to pre-authorize his corticosteroid prescription. I’ve spent hours on hold, and no medicine is coming. I’m trying to set up a bridge shipment, but it’s slow going.
Paperwork
Max turned 18 in November, so he’s considered an adult in many places. That means we have to set up a medical power of attorney or something similar in case he cannot communicate what he wants. I need signed paperwork that allows me to see test results and the like. He needs to register to vote and for civil service. He’s applying to vocational rehabilitation and Supplemental Security Income, not to mention college scholarship applications.
There is so much paperwork!
Wedding planning and baseball
I have to find the impossible balance of caring for Max, Rowen, and Charlie while being a parent involved in my other children’s lives. My oldest daughter, Lexi, is planning a wedding, and I’m not doing enough. My only son without Duchenne is in baseball season, and I’ve already missed games. There’s not enough time in my days to be the mom I want to be to all my children.
My days often seem like they run into each other. A few hours of sleep is all that separates them. Most moms can identify, but it’s full-time effort for those who double as caregivers, with no sick leave or vacation.
I have no pretty prose to make it seem better than it is or to add beauty. It’s a lot to handle, and it takes more than I have some days. The beauty lies not in my words, but in the love that fuels us to do it all.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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