Why I Love the Ordinary Moments of Motherhood
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I love the everyday, ordinary moments of motherhood. Maybe I’m crazy, but the laundry (no matter how never-ending), groceries, menu planning, and chauffeuring of kids all bring me so much joy!
Duchenne muscular dystrophy can be a thief of that joy. Duchenne is hard to plan for, and because it is a complex disease, it requires many moving parts and people to manage it well. Therefore, it can change my plans in the snap of a finger.
My love for and joy in the ordinary moments exist for a plethora of reasons. One probably is the fact that I can control those things. I get to decide what’s for dinner or which load of laundry goes in next. Let’s face it, so much is out of my hands when it comes to Duchenne. So it feels good to have a little of that control back, even if over the minute details of running a home.
Second, have you seen the movie “Same Kind of Different as Me“? I think the same concept applies here. When I wash my family’s clothes or buy and prepare the food my family eats, I am the same as any other mother. Duchenne makes my family not very ordinary. My experience as a mother is different in many ways. It’s easy to let those differences and comparisons steal my joy. Remembering that we are not so different gives me balance and peace.
Menu planning is a big one for me. I love sitting down on a Sunday morning and talking it over with the family. I ask the kids if there is anything special they want that week. I look at our schedule and see which nights require a quick or crockpot recipe. If there is a hectic night with no time for cooking, we should plan to eat out. My husband, Jason, loves to cook, so he is an active part of the planning. I even share our weekly menu for families who don’t enjoy it as much as we do.
I have been ordering groceries online after I make the menu, and scheduling a grocery pickup. Still, inevitably, they forget to load a bag of groceries or are sold out of something, and the substitutions are inaccurate. So this week, while my kids are all in school during the day, I decided I would go myself. I had the time, and I enjoy looking at ingredients and making changes to my menu last minute if I see something fun or in season.
Except in this family, Translarna (ataluren), an investigational treatment that my sons with Duchenne take, trumps food!
Last week, the delivery truck did not deliver the medication on the day it was supposed to, when I was home and could have signed for it. This messed us up. Even as I write this six days later, it has yet to be delivered.
Delivery was attempted Thursday and Friday of last week, but being a mom of six makes my schedule a little full, and I can’t just leave a kid at school because the delivery guy hasn’t been here yet. I missed both attempts.
Yesterday, our clinical trial coordinator texted me to tell me the medication was out for delivery, so I scrapped all plans, including grocery shopping. At this point, we were very low on our supply of this particular medicine and needed it. It’s not something we can run out and buy at a local pharmacy.
I stayed home all day waiting for it, and it never came! I had already spent the weekend online trying to figure out how to get it delivered to a pickup location. We ended up having leftovers for dinner. The part of life I could control was suddenly out of my control.
We’ve been on this medication for years, and this is the first time we’ve had so much trouble. The trial coordinator texted me again this morning, after being on the phone with the delivery company, and said it should be delivered before noon. That was 20 minutes ago, and still no delivery!
However, my husband, who works from a home office, but was busy with an industry agriculture show last week, is home today and waiting for it. That gave me time for pool therapy with two of our boys and grocery shopping. It felt so good to be able to cross something off my to-do list.
I love the everyday, ordinary moments of motherhood. But of course, I love all the crazy, uncontrollable, chaotic moments, too. I just sleep better after the ordinary ones!
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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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