A Day in the Life

Some days I wake up determined to face my day. Some days I feel motivated to do everything with a good attitude. I aim to view each day as another opportunity to make memories, live life to the fullest, and be grateful for what I have. Some days I breeze through my days of caretaking, motherhood, teaching, and serving with joy and purpose, but other days I have trouble just making it to the coffee maker.

Today was one of those days. I woke up exhausted from the night before. I had trouble falling asleep last night and when I finally did, the boys needed me about four times so I was tired. It’s kind of hard to describe a day in my life without sounding like I’m complaining. I assure you that I am not complaining. In fact, I’m very happy with my role, but some days I just feel overwhelmed by all of it.

My children are my greatest accomplishment and I will forever view my role as their mother as my divine purpose. I see it as a profound honor to care for them, but that doesn’t mean it’s not difficult. Being a mom is hard enough without adding a degenerative disease to the mix. Every Duchenne mom has a different routine, different way of doing things, and a different journey – this is just mine.

This morning I woke up to a message that our home nurse would be early, so I got up and got dressed in a hurry. After attempting to hide my dark circles with a bit of makeup, I went to get the boys up. I dressed them, helped one son up, and then lifted my oldest into his power chair. After feeding them breakfast, giving them their daily meds, and feeding the dogs – I headed for the coffee maker for the first cup of many. I could tell already it was going to be a long day. Infusion days are better now that the boys have ports, but they still add a lot to our day.

The infusion went great, other than some sibling bickering and my five-year-old daughter’s morning attitude. Much like her mother, she is not a morning person. I served lunch while they sat through the infusion, which usually takes about an hour for each of them. Then it was time to try and feed myself. First, I helped my oldest son to the bathroom. Since he is non-ambulatory, he needs to be lifted onto the toilet, which thankfully I can still do by myself. Finally, I poured another cup of much-needed coffee and sat down to eat lunch.

My kids love video games and usually play Nintendo together, but today they chose to play Legos before school. They enjoy setting up little houses, building kits, and creating a whole imaginary storyline with the hundreds of Legos that flood our playroom. The boys play from their power chairs while my daughter plays from a dining chair or sometimes while sitting on the dining room table…. sigh.

I should mention that one of my many roles throughout the day is the “Lego picker-upper.” That may fill up more of my time than I’d like to admit, but they can’t pick things up from the floor so I try to be a good sport about it.

I clean up a bit while they play, which usually includes laundry, dishes, and any work I’m behind on. If I’m lucky I may even have time to shower or exercise, but usually, I’m needed elsewhere.

Then comes homeschool. I like to start school in the afternoon due to my lack of morning energy. I find it goes better when we are all fully awake and fed. Then I attempt to teach my sixth-grader, fourth-grader, and kindergartener all at one, which is a bit like juggling live animals. Some days are easy and other days I work hard to get them to focus.

P.S. I hate long division.

After school, I attempt to plan something for dinner, although lately it’s been mostly take-out or something easy. I used to enjoy cooking, but some nights it just feels like a chore. When my husband gets home, sometimes I head to the grocery store or if it’s been a really hard day, I like to take a bubble bath and listen to worship music. Fortunately, I’ve been blessed with a husband that encourages me to rest and take care of myself, which I tend to put off until I’m completely drained.

Before bedtime, we usually spend some time with the kids or watch a show together. After that, we get the boys settled and comfortable in their beds. After teeth brushing, prayers and hugs, I move on to tucking in my daughter. Then I prep for the next day, which is mainly just setting out school, charging power chairs, and tidying up the house one more time. Then I collapse into my bed like I just ran a marathon. I do end up getting up a few times in the middle of the night to help the boys go to the bathroom or reposition them but thankfully I’m usually able to go right back to sleep.

There’s an expression, “The days are long but the years are short.” It’s true that the days feel long and exhausting sometimes, but when I look back, the years have completely flown by and that has taught me to cherish each day, even the hard ones.

Today I woke up exhausted, but by the end of the day, I still felt grateful for the things I get to do. I get to homeschool, which allows for more time with my children. I get to be their caretaker, which gives me a sense of purpose and accomplishment. I get to be a mom, which is the only thing I’ve really ever wanted to do with my life. I get to be married to my best friend who loves me at the end of whatever kind of day I’ve had.

Everyone has hard days, everyone has hectic routines, and everyone has difficult life moments, but not everyone feels chosen for the role they were given – I do. So – busy day or calm day, I am doing what I’m meant to do. I’m caring for my favorite people in the world. Even on exhausting days when I’m too tired to form a clear thought, may I always remember the importance of my role. And, to you fellow Duchenne parents, may you always remember the value of yours.