Managing a Chronic Illness: What It Feels Like Parenting With Limits

I had a healthy pregnancy and recovery. But something happened when my daughter turned two and weaned. My body began to rebel and malfunction. Before I realized what was happening, Crohn’s disease remission as they call it, was over. It was a good run though – nine years of health, no medications and no medical interventions. I took my body for granted all that time.

Lately, I’ve been reflecting on the decisions I’ve made in the last couple years. Of course, there are things I would change, but so much feels out of my control. The good days are great days. The bad days, well … I try not to dwell on. Where I’ve found some peace of mind is placing purpose at the forefront of every day and asking myself the “why” behind my decisions. I may not get it right every time, but at my hearts center, there is a focus on the better good and making memories.

Here’s what I’ve learned:

I won’t give my daughter more reason to be afraid. In August of 2018, I was admitted to the hospital for a few days. It was the longest I’d ever been away. We wrestled with whether or not to allow her to visit, but after talking it over, my husband and I firmly decided that it was best not to invite fear into our child’s life. Fear will come when it comes, as life requires, and we will deal with it then. Instead, we video chatted and talked on the phone. I checked in with her before bed and made sure to call when she woke up.

Children understand more than we know. I rarely have to tell my daughter that I’m not feeling well. She knows. I can get tired easily and there are mornings when venturing beyond the bedroom is more trouble than it’s worth. On those days, I’m thankful that I can set her up with breakfast in bed and turn on educational TV and doze off. She can take herself to the bathroom and even open the refrigerator and grab a snack or juice if she wants it. When I’m able to gather myself, she’ll ask, “Are you feeling better, Mommy?” A child shouldn’t have to ask the question, but mine does. I’ve chosen to embrace the compassion in that.  

I give what I can and forgive the rest. I’m often that parent at the playground sitting on the bench while my child yells from the slide, “Mom, look at me!” I’ll wave and smile while the other parents help their children climb the apparatus or push them on the swings. I’ve accepted that she isn’t going to remember that I had to sit down and take a break. What she’ll remember are afternoons at the park, playdates with friends, picnics and zoo visits. I recently got sick during my daughter’s music recital and vomited all the way to the car. I pray she forgets that bit, but remembers how hard I tried to show up for her.  

I’m angry at the disease, not at motherhood. It can all get jumbled and complex. There are obligations and promises, sleepless nights, pain, nausea, more pain, discomfort, doctor’s visits, tests, tests and more freakin’ tests, work and household duties. There are meals to make and craft projects to paint. There are emails to answer and calls to return while trying to simultaneously be diligent about my diet, medications and keeping my stress level low. My child gets the worst of me at those times when I feel spread so very thin. Before bed, we talk about our day and if I’ve been impatient with her, I apologize. If she hasn’t been a good listener, we talk about it and make a pact to be better the next day.

I am a wife first and a mother next. I am a Crohn’s patient last. I will not allow this disease to make my parenting choices for me. My child still thinks I’m superwoman. She sees me as this infinite being who knows all, is the maker of all things good and the solver of life’s problems. I want her to enjoy that for much much longer. 

 

 

 

 

 

 

 

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