You Can’t Run on an Empty Tank

The importance of taking time for yourself - Kaysen, Lana & Mark

Taking care of myself doesn’t always come easily to me, and yet it’s a crucial part of parenting a child with SMA. I like to think of myself as a strong person and I do my best not to dwell on the negatives of SMA. Even so, being strong doesn’t mean that I can’t also be vulnerable. I am by no means invincible and I’ve learned that when processing an SMA diagnosis and caring for someone with SMA, it’s important to acknowledge that all feelings are normal.

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Feeling afraid, doubtful, overwhelmed, or even just plain tired—it’s all normal.

Still, coming to terms with those feelings is a process. I’m not afraid to say that even after a few years of practice, I still struggle with the balance of being a wife, a mother, a stepmother, and a parent to a child with unique needs, among many other things. But I work at it everyday and I know that there is no shame in that. Seeking help from those around you and from within yourself is key to overcoming those daily parenting challenges that we all experience. Our minds do such a good job of tricking us into believing that as parents and caregivers, tuning into our needs is selfish or irresponsible. In reality, it’s a necessity.

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One of the ways in which I’ve learned to take better care of myself is by looking for pockets of time in my day where I can do something that is just for me.

There is always going to be laundry to do, toys to tidy, phone calls to return—none of those chores are going to go away. In fact, it feels like they somehow always find a way to multiply! So, instead of spending every waking hour running around trying to get it all done, I try to set aside time for myself to recharge.

Kaysen’s naptime has become my quiet time, too. I take that hour to go lie on my bed and scroll through my phone or maybe read a book if I’m feeling up to it. The goal of these moments is to be kind to myself, not embark on an extensive self-improvement project. I do whatever it is that I feel that I want and need in that moment, no matter how simple, because dedicating that pocket of time to myself will ultimately help me help Kaysen.

Lowering my expectations to better meet both my family’s needs and what I can reasonably accomplish in a day has helped to reset my approach to caring for Kaysen. At the end of the day, he won’t remember the times that I let a couple dishes pile up in the sink or wore the same sweater two days in a row. Kaysen will cherish the moments where I was able to be fully present with him while we read a book or played with his cars, because I made sure to listen to my needs.