Moms Can Do It All, but That Doesn’t Mean We Should

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by Betty Vertin |

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The title of this column comes from a meme I saw this week. Its message found me at a time when I needed to hear it.

My three sons with Duchenne muscular dystrophy have appointments at Children’s Hospital Colorado the first week of December. (Yes, we must take three boys to the clinic for several days every six months. It’s a lot of appointments!)

Unfortunately, that also happens to be the first week of high school basketball games for my son Chance. He is a freshman, so they will be his first high school games ever. My husband, Jason, and I feel it is important for one of us to attend those games, but it makes clinic week more difficult to manage.

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Jason and I have stayed up way too late on several nights discussing how to make this work. Ideally, we’d both like to travel to Denver from our home in Nebraska at the beginning of the week. Our sons Max, Rowen, and Charlie each have a cardiac MRI and an endocrinology appointment scheduled for the second day. That requires two adults. The first and third day will be simpler, but the fourth day is also busy. Cardiology is their final appointment, and it’s an important one.

We usually split up. Jason accompanies the boys to physical therapy, DEXA scans, pulmonary function tests, and so on, while I stay in the room and talk with multiple specialists.

The plan was to drive out together, and then I’d fly home early to attend Chance’s first game on Thursday. However, those of you who live in larger urban areas may be surprised to read that we couldn’t find a flight that made sense.

The plan evolved. Jason and I will split up. One will go to Denver with Max, Rowen, and Charlie, and one will stay home with Chance and our youngest, Mary.

The hardest part for me was deciding who will go to the clinic. Since the boys’ diagnoses, I’ve made it my mission to do everything as their mom. I’m extremely independent, and it has taken me a while to slowly relinquish some control and let my husband be an equal participant in decision-making and the boys’ care.

To be fair, I can’t give myself too much credit. I have grown as a person, but trust me — not by much. Part of me only relinquishes control out of necessity. My husband is physically stronger, and he can lift and transfer the boys much better than I can, especially as I begin to waddle through the third trimester of pregnancy. He will also be able to drive home Friday after the appointments. I would have needed to stay an extra night to sleep before driving home. That would mean another day of our family being apart, and we wouldn’t like that.

I hate that I will miss appointments with the boys, but it’s what we’ve decided. My husband will FaceTime me during each discussion with a doctor so that I can participate. Thank goodness for technology.

I admit that even when we’re both at the clinic, we miss things. Three boys, four days, dozens of procedures, and several doctors is a lot, and we often rely on each other to remember what we heard from which doctor about which boy. Thankfully, all summary reports and test results are posted on MyChart.

I think that Duchenne moms are amazing. We are the captains that keep our ships afloat. But just because we can do it all doesn’t mean we should.

I am embracing that. I am focusing on being thankful that my husband is a great father who is capable of accompanying the boys, discussing their health, and maneuvering through the hospital. He is an expert, too, and it’s good that we each have unique styles of doing things.

I will still be part of the decision-making, as will the boys. But I know Jason will do a better job of making sure the boys have fun. They will have a guys’ night after each day’s appointments. After returning home, the boys will be beaming authentic smiles and telling me stories of their adventure for weeks to come.

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Note: Muscular Dystrophy News 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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