Reminding Myself That Not Every Day Is a Bad Day
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We had a tough day here this past week. Everyone was tired, and emotions were running high. After a long day, we hit a breaking point.
I was going on day six or seven as a single parent while my husband was traveling with one of my sons for baseball. I was home, of course, with five of our children, three of whom were my sons with Duchenne muscular dystrophy (DMD) and the others my two daughters, ages 5 months and 7.
That alone is grounds for me to feel tired and stressed. My middle son with DMD, Rowen, who is 13 and nonambulatory, depends on me for a lot of help during the day, which is to be expected and is something I’m used to. Additionally, my infant daughter, Callie, is entirely dependent on me. When I am parenting alone while my husband is traveling, it’s a real challenge to balance Rowen’s and Callie’s needs and take care of the other three children still home.
But I was managing. It was my last full day alone as my husband was due home early the next morning, and I thought we’d made it. Then, however, a significant anxiety attack from my oldest son with DMD, 16-year-old Max, set in motion what looked somewhat like an emotional derailment for everyone at home.
I can usually sense an anxiety attack, but this one surprised me. In hindsight, it wasn’t entirely out of the blue, but I think I overlooked the warning signs because I was alone and stress levels were running high.
However, even when I see one coming, the anxiety attacks level me. Duchenne and caregiving for my three sons living with it have given me plenty of hard things to deal with and learn to live with, and for the most part, I do OK. But anxiety attacks have been one of the hardest things for me.
When Max is in the middle of an attack, there is no talking him out of it. Nothing I do seems to help, and often I become the target of mean words and insults. Not to mention that we have an audience when it’s in public, as this one was.
The experience took everything out of me, and I was running on fumes to begin with. As a result, I was tired and grumpy for the remainder of the day. Little things made me mad, and the kids were getting some of my not-my-best parenting moments.
The saying “If mom’s not happy, nobody’s happy” rang true in our house that night.
My emotions had a ripple effect. Soon, the boys were being mean, and my 7-year-old, Mary, seemed to be their target. Soon, she was in tears. She thought her brothers didn’t love her. This experience was not the first time they took their emotions out on her.
Mary is a big helper. I’m always outnumbered, and she helps her brothers to help me. At times, especially when they’re tired or frustrated, they resent that someone younger, their little sister, has to help them. I try to explain why, and they understand I need her to help and that she does it because she loves them. But when they are hurting, they can be hurtful.
That night, when I tried to explain why the boys are sometimes mean to her, I explained how sad we were before she was born. She didn’t understand that Duchenne made us sad sometimes. I realized then that she doesn’t know what will happen to her brothers if there is no cure in time. I managed to maneuver to the end of the conversation without telling her; it was not the time for my sensitive and sweet daughter to know a hard thing like that.
Instead, I shared with her that she is special to us. Mary was born three years after the boys were diagnosed, and she healed many broken hearts. I once wrote a blog post about it and promised to share it with her someday so that she knows how important she is to our family.
She fell asleep comforted and feeling our love.
I finished the night putting my three sons with Duchenne to bed and then cuddling with the baby. There were so many deep-breath moments in 24 hours.
It was a day that no book and no other parent could tell you how to navigate. So I just kept taking one step at a time, even if not very graceful steps. I was honest with myself and my children, apologized for my less-than-fine moments, and let everyone feel the feelings, knowing that not every day is a bad day.
I like to end my columns on a positive note. Today, it’s a simple message. There will be hard days, and we must get through them. If I’m being realistic, there are hard seasons. But to get through them, we must remind ourselves that not every day will be hard.
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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