I thought parenting was the toughest adventure — until I became sick

To say my life completely changed when I became a mother is an understatement. Suddenly, this small, fragile being was my world and greatest responsibility. I had a second child just one year later, and now two little humans were my focus. Little did I know, a life-shattering chronic illness would alter the course of our lives and shift my priorities away from parenting.

In September 2020, I was a single mom who had just moved to a new city with my 4- and 5-year-old boys. I was working a great job, making the most money I ever had, remodeling my first home, and doing many fun activities with my kids. We didn’t know anyone in the area besides my co-workers, who lived an hour away. So when I sought medical care after weeks of not feeling well, I knew the boys would have to tag along.

When my symptoms peaked, we went to the emergency room. COVID-19 was still going strong, so I assumed I’d been exposed and hoped the ER would write me a note so I could take a few days off work to rest. It was pretty chaotic with the kids there, running circles around me, giggling and tripping over each other, and making paper airplanes.

Eventually a lead doctor was blunt with me: “Ms. Jordan, you’re dying. You’re experiencing kidney failure, and other organs are affected as well. We need to do surgery and start dialysis. Someone needs to pick up your children.”

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I felt shock, disbelief, panic, nausea, and fear, all at once. I looked at my phone and blinked, unsure what to do or say. Even when I was literally dying, my first thoughts were about my children. How long would I be away from my kids? What would happen with their schooling? Where would they go if I didn’t survive?

All of these concerns raced through my mind. I called my children’s paternal grandparents, who lived three hours away. They took my babies home with them as I prepared to fight for my life.

It was nearly two months before I was able to see my children again. I spent that time in the intensive care unit in multiorgan failure, due to a rare disease called atypical hemolytic uremic syndrome (aHUS). I spoke to my boys on video calls, but seeing me and not being with me just made them sad.

The central venous catheter hanging out of my chest, huge purple bruises all over me, and dark circles under my eyes were very upsetting for my 4-year-old. He was always attached to my hip, so this huge change was especially hard on him.

The challenges continue

I eventually recovered enough to be able to return home and stop dialysis. But even today, my chronic illness and the chemotherapy infusions I do to stay alive make parenting much more difficult than ever before. I’m very weak and tired most of the time. I can’t run and chase my kids, and I don’t have the stamina for events like field trips and carnivals. I even have days when it’s hard to get out of bed.

Last year, we went to the zoo, and I had a panic attack that I hid from my kids and our friends who were with us. The walking and heat got to me. I grew hot and flushed, and breathing became difficult. I got a charley horse in my leg so bad it took my breath away, my right side ached where my liver hematoma is, and my lungs began to burn.

I got so overwhelmed that I became an emotional wreck and needed to step away. I was worried that my then 6- and 7-year-olds would long remember me crying and losing it at the zoo. These are the things I have to consider while parenting with a chronic, rare illness.

But the hardest part of parenting while sick is the mom guilt. My boys miss out on numerous outdoor experiences because I don’t have the stamina anymore. They lose four days a month of meaningful time with me because of my biweekly chemotherapy and the following day when I don’t feel well. I don’t chaperone field trips because I can’t keep up with the group and don’t want to distract from the kids and the trip.

Will my boys resent me for missing out on so much? Or will they recognize how hard I try to be present and give them fun and enriching experiences? Only time will tell.

Oddly enough, one thing this disease has given me is time. I can’t work a traditional, in-person job anymore, so I have time to pack lunches, help with homework, plan vacations, snuggle on the couch, and even cook healthy meals. While aHUS ruined a lot in my life, I’m thankful it’s also afforded me the opportunity to enjoy more time with my children.

Note: aHUS 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 other 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.