Caring for My Son Helps Me Continue Being a Lifelong Learner

Before my 2-year-old son, Alfie, was born, I was a primary school teacher. While I still work occasionally on a casual basis, it’s a much smaller part of my life than it once was.

One of my favorite things about being a teacher was the constant learning — and I’m not just talking about the students.

In Australia, schools host a yearly event called Education Week. It’s a celebration of public education and the achievements of our schools, students, and education system. This year, Education Week will run the week of July 26-30 and celebrate the theme “lifelong learners.”

I actually had a bit of a giggle when I saw this theme. I reflected on my previous life as a teacher and my current life as the mother of a son who lives with LAMA2-related muscular dystrophy.

While I am no longer learning about learning continuums, teaching frameworks, and new curricula, one thing hasn’t changed: I am a lifelong learner.

Once again, I am constantly learning. Some days, it’s new medical terminology; other days, it might be a new physical therapy routine or exercise. And sometimes it’s simply a life hack.

The past week or so has been particularly stressful, and I’ve learned several new things that I’d like to share with my fellow carers. Some of the following tips may seem like common sense, but when your brain is full of appointments, medications, therapies, and equipment, it can be easy to forget the simple things. Hopefully you can learn from my experiences.

1. Always order more than you need. This goes for feeds, tubes, syringes, medication, everything. You never know when there might be a supply issue or delivery delay, or you just totally forgot to order. (Oops, that was me!) If you always order more than you need, hopefully you’ll always have a backup if you need it.
2. Create an emergency care plan. As Alfie’s main carer, and the person who organizes most of his care, I had a realization this week. There are so many little things I do for Alfie that are second nature to me, such as ordering his enteral feeds. But if something were to happen to me, no one else would know that information. Having an emergency care plan in place means that if something goes wrong, the person you care for will still be looked after.
3. In fact, just write down everything. Appointments, shopping lists, to-do lists, important dates — absolutely everything! If you’re anything like me, if it’s not written down, you won’t remember it. Carry a notebook with you, or use the Notes app in your phone.
4. At stressful times, keeping your hands busy can help calm the mind. Last week, Alfie had surgery, and obviously, it was impossible not to worry the entire time that he was in the operating room. This was his second surgery, and rather than marching up and down the hallway and checking my watch every 30 seconds, my mum and I sat outside the recovery room and crocheted a blanket. Although several people walking by commented on how funny we both looked, it definitely helped to pass the time.

These are just a few things I’ve learned recently, and I’m sure as a lifelong learner, I’ll continue to learn more. Perhaps you have some tips you can share with me in the comments below. I’d love to hear them!

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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.