To the Mom Living With Chronic Illness Who Feels Inadequate
There are things I wish my older self could have told me when I was young, chronically ill mom. Maybe I wouldn’t have felt so alone back then or so wrong and inadequate. I struggled every day to take care of my boys the best I could, second-guessing myself every night. Because that’s what you often do when you’re chronically ill and have children.
I want to tell all the young moms out there who are chronically ill, in pain or disabled the four things I wish my older self could have told me when I was a young, chronically ill mom:
1. Housework isn’t everything.
With children in the house, I understand there’s a certain level of cleanliness that needs to be maintained. And that’s fine. But housework isn’t everything. If a toy stays on the floor another day so you have the energy to read a bedtime story, so be it. If the towels don’t get folded and put away, no one will notice. I used wrinkled towels out of a clothes basket for years (the wrinkled shirts didn’t go over so well).
Living with an unpredictable, chronic disease means never knowing when or how it will strike, so pick your housecleaning battles wisely. Time with your family is more important than dust on the coffee table. Kids can draw in dust! And tomorrow, you may feel better.
2. Invent activities that allow you sit or lie down.
Games like sock golf (no clubs, just nine paper bags on the floor), camp out (I napped) or color clues (I drew clues they had to color in to find the next clue and eventually a treat) allowed me to sit or lie down so I could be involved.
My kids became experts at card and board games because I could play lying down. And don’t count out the movie marathon. Your kids won’t be ruined by a day of snacks and movies under the blankets, cuddling with you because you’re just that sore or tired. Your kids want your time, not your physical prowess.
3. Your children won’t see you as sick.
Sure, I told them. I did. I explained why Mommy couldn’t take them to the park or why Mommy is on the couch again. But they didn’t really see me as sick. They saw me as Mommy. And that made me the most important person in the world to them, and they love you for it. So although you may think they see you as sick mommy, all they see is l-o-v-e.
4. Your children will stand up for people with disabilities.
Now that my children have grown up, they protect me. Even my extremely shy 19-year-old son, who hates talking, took the phone from me during a disability interview to explain what kind of person I am, what kind of mom I’ve been and how many challenges he sees me face even though I won’t admit it. They have never judged anyone and have stood up for those with disabilities at every turn.
They work hard, play hard and truly care about people. This is what they’ve learned growing up with a chronically ill mom.
So, newly diagnosed mom, your instinct may be to feel like a bad mom because your house is messy or you can’t go for a walk with your kids today. But I’m telling you, that’s wrong. You’re exactly enough because you’re Mom, and you’re awesome.
Follow this journey on When the Small Stuff Sweats.
Born and raised in Rochester NY, she was diagnosed with Sjogren’s 4 months after her second son was born. Her kids are now 24 and 26 years old. She has since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. She raised my kids, worked at her career for over 30 years, and has been a wife to her husband of 29 years while being diagnosed with an autoimmune disease for 24 of them. She currently writes from the heart about these experiences while wrangling their one rescue dog and three rescue cats as well as volunteering for a rescue organization as a kitten cuddler on weekends. She recently fostered a young mama cat with her 5 2day old kittens and has now added mama Lilli to her brood!
sharilynn-battaglia