This post is one that I honestly debated writing. My health, my challenges, my pride, and my family dynamic are all things that I am fiercely protective of. But, this is my reality every day.
I have Multiple Sclerosis. And it affects the way I mother my children…a lot.
I’m not going to go into the nitty gritty of my diagnosis, disease history, and all that. Maybe one day, but for right now, suffice it to say that I was diagnosed when I was 19 years old during my sophomore year of college and my disease has always been pretty steadily active. At this point almost 10 years after I was diagnosed, my MS is most significantly affecting my role as a mother so that is what I’m going to focus on.
Chronic illness comes with a lot of baggage, physical, mental, and emotional. I’m very lucky to have a partner who has been on board for all of it. Tim and I started dating exactly two years after I was diagnosed. At that point, even though my disease was active and I had symptoms, it wasn’t something that necessarily affected my everyday life. I had bad days and flare-ups every once in a while, but we lived our life like two people in their early 20s starting our great adventure, which we were. Fast forward almost 8 years, a few jobs, a few homes, grad school for both of us, a few IVF cycles (more on that later…), and two babies – my MS is definitely a part of our everyday life. Which means it is inherently part of our children’s everyday lives. And that’s where the mental and emotional baggage kicks in.
It is immensely challenging for me to say “Mama can’t do that” or “Mama doesn’t feel good” or “Mama has to go to the doctor”. I know that I am fortunate that my disease does not affect me in the same way every day, and I have days that I feel well enough to do most things. But there are things that I am always unable to do. I can’t hold either of my kids in my left arm for more than a few minutes. I can’t play outside with them when it’s over 75 degrees. I can’t bring them to the beach alone because I can’t sit in the sun. I can’t get up and down from the floor more than a few times in a row. I can’t run.
That is something that has become increasingly hard for me as TJ has entered this very active stage of toddlerhood, especially since he loves being outside so much. Not that I was ever an athlete, but I always pictured myself as an active mother. At the park, in the backyard, riding bikes, that kind of thing. I never pictured myself sitting on a bench in the shade while Tim played with the kids because standing in the sun for more than five minutes is exhausting and painful. I never pictured having to have someone come help me with baths and bedtime because by that point in the day, my whole body hurts and is screaming for sleep. And I never pictured having to explain any of this to my children.
I know in my head that their experience growing up with a mother with a chronic illness will help make them empathetic and compassionate men. But in my heart, I feel like I’m jipping them; like I’m depriving them of a mother who can actively participate in every aspect of their childhood.
This feeling might pass. It might become more intensified. That is one of the most frustrating things about this disease – its unpredictability and lack of rhyme or reason. Sometimes, you do everything right, take your meds, stay out of the heat, exercise as best you can, and you flare up anyway. Other times, you flare up because things like stress, trauma to your body, and lack of sleep are triggers, and there is no more accurate description of the postpartum period but it’s a trade you’re willing to make.
I am navigating this disease one day at a time right now; waiting to see if steroid infusions do the trick, if physical therapy might help, if sleeping more eases the severity of my symptoms, or if this is, as they say, the nature of the beast. If almost ten years in, this is just my new normal. And my children’s new normal. If it is, I will undoubtedly have new emotional baggage to face, but I will do my best to be able to be present for my children…however I can.
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