Shock to the System accepting help, resting, and slowing down are key to managing a chronic illness while raising kids

Renee Bonjour |

Over the past year, I’ve had some life lessons about health and parenting that have really shocked my system. In January, I began having some pretty abnormal issues. One day I couldn’t walk straight, my speech was slurred, and my handwriting went from “pretty decent” to “illegible.” I had no idea what was wrong and all of the doctors thought I had a stroke or a sudden onset of multiple sclerosis.

“One of my doctors said something that is a guiding force for my own wellness: ‘Be sure to give yourself grace. That is the key; be patient with yourself.’ ”

Not knowing what was really wrong with me was a challenge. In the beginning, I was convinced that I might just be crazy. My kids couldn’t understand what I was saying and I couldn’t make it up the stairs to put my oldest son to bed. Life was upside-down and no tests or bloodwork showed anything wrong. My doctors were stumped.

Finally, they found inflammation in my spinal fluid. Things continued to get worse, and I was shipped over to Rochester to figure out what was really going on. I spent six days in the hospital where they checked me for cancer, which I didn’t end up having. 

The final prognosis: autoimmune cerebellar ataxia, a rare disease with little historical evidence. The research out there is depressing. The only study I found on it showed that out of 120 people followed over the course of 20 years, 75 percent ended up permanently in a wheelchair or with a walking aid. Only four people, or three percent of the participants in the study, ever returned to a normal state. Autoimmune cerebellar ataxia is commonly called the “hopeless disease” because there is very little that improves the loss of coordination.

In the meantime, no one would guess my issues just from meeting me. However behind the scenes, I deal with sudden onset exhaustion, which is difficult to manage when raising two kids. The other thing I deal with is baseless anxiety. What is that? I consider the anxiety baseless because there isn’t a specific event that triggers it.  When my anxiety happens, I feel panicked and closed in. While I can recognize that it is happening, I can’t pull myself out of it and have to ride the wave until it subsides. 

When things started going wrong, my youngest son Reid was a little over 18 months old and my oldest son Easton was 4.5 years old. The difficulty of having kids while struggling to control an autoimmune reaction is that they don’t understand what is truly wrong with mommy. We had to boil down the specifics mentioned above to “Mommy’s sick.” When I returned home from Rochester, the fun really started. Life with little kids must go on, even when you aren’t feeling 100 percent.

At home, I wanted to push myself to be as helpful as possible. One day my husband called to say he would pick up the kids. I decided to help by having peanut butter sandwiches ready for the kids when they got home. It took me 20 minutes to complete the simple act of trying to spread peanut butter on bread.  However as frustrating as that was, I knew I had to keep pushing myself to do things that were hard.  I had to stay positive and productive.

As I struggled with determining how to get through this part of my life, one of my doctors said something that is a guiding force for my own wellness: “Be sure to give yourself grace. That is the key; be patient with yourself.” Through this experience, my understanding of this concept is becoming clearer. When managing a chronic condition — or just parenting in general — it’s important to release the feelings of guilt associated with not accomplishing everything on the to-do list. Instead, focus on what was accomplished. We judge ourselves more harshly than anyone else, even when we’re sick.

Here are some important things to remember!

Take time to rest

The fatigue and exhaustion I still have today are often overwhelming. The most poignant moment I had happened in late March 2016. I told my oldest son that we’d go to the Children’s Museum. When Sunday came around, the exhaustion was too much to overcome and a trip to the museum wasn’t going to happen. We both sat on the floor and cried. One of the takeaways from dealing with a chronic illness is that I need to give myself time to rest. Despite what I may think, the kids will be fine if the schedule isn’t crammed full of events. Most children don’t care if you can take them places or do fun things. They just want to spend time with you. Simply spending time coloring with them or reading to them is just as special. When we go out and do something, I have to build in “recovery time.” Often on weekends, this means at least one afternoon is dedicated to a nap. I know if I don’t do that, I will crash at some point during the week. Taking a break isn’t selfish; it’s actually the opposite. To be a good mom and good person, I know I need those breaks to be my best.

Accept help

I had to learn this lesson early on. I take a lot of pride in doing things for myself and asking for help seemed weak. Over time, I realized accepting help was anything but weak. Help from others prevented my entire household from being utterly overtaken by laundry and mess. I learned that it’s OK to take help and be willing to ask for it when it is needed. 

Slow down

The phrase “I run like a herd of turtles through peanut butter” describes how I accomplish things from here on out. If you know me, you know that I do everything fast. I talk fast. I try to get things done quickly. Having this happen was a real eye-opener for me because I had to deliberately slow down when I was speaking to people. I had to significantly scale back on my busy schedule and try to cut down on the number of additional things I was doing for work. At the end of the day, I decided I needed to make sure I had some energy left to be able to do things with my kids. The guilt from this reality was difficult for me to deal with. I am used to being able to do everything no matter what. But now I realize that if I don’t slow down, I can’t take care of others.