I always dreamed of being a mom. Those dreams included long family road trips, exercising together, and being healthy. Autoimmune disease stole those dreams, not allowing me to be the mom I wanted to be.
After complications from the Epstein-Barr virus in my twenties, doctors told me that I would likely never be able to have kids. Despite that heartbreak, I knew there was more than one way to be a parent.
Fortunately, I was able to carry and give birth to two amazing girls. Never does a day go by that I don’t thank God for them.
Unfortunately, what the doctors didn’t get wrong is that my illness left me with an autoimmune disease.
An autoimmune disease is an illness that causes the immune system to produce antibodies that attack normal body tissues. Autoimmune is when your body attacks itself. It sees a part of your body or a process as a disease and tries to combat it. Although often difficult to diagnose, approximately 50 million American suffer from one or more of the 100-plus autoimmune diseases. Unfortunately, there are a lot of us mommas parenting with autoimmune diseases, as women are twice as likely as men to receive that diagnosis.
Sometimes one autoimmune disease leads to another. I happen to fall in that twenty-five percent of autoimmune disease sufferers.
When I dreamed of being a mom, managing autoimmune disease never appeared in that vision.
Rather, I thought I would be a working mom like my mom. She enjoyed a long and rewarding teaching career, influencing the lives of countless students. She balanced that with always having a home-cooked evening meal and the right jersey washed for whatever game or track meet my brothers and I had next. And she was always there to watch our sporting events and keep us in line when we needed it.
I thought I would coach my children’s sports the way my dad did. And I thought I would work out with my children like I did with my dad. We spend countless hours in the gym, weight room, and on the track. I remember getting up early on summer mornings and going for long runs together. I’d imagined doing the same with my own children.
I envisioned our family taking long road trips across the country the way my family did growing up. I’d teach my children geography and history lessons along the way.
Because of my autoimmune issues, I can’t work full time. I can’t remember the last time I was able to run. And I can’t ride in a car more than a couple hours at a time.
When I have a flare, which happened recently, I find myself slipping into mourning all that I am not. For all that I can’t be for my girls and husband. For all the experiences we won’t have together because of my limitations.
I hate being in that place.
Most days I’m naturally positive and grateful. I find it easy to focus on what I CAN do and I throw myself into that. I’m blessed with an amazing husband, two wonderful daughters, and incredible family and friends.
Parenting with an autoimmune disease can be challenging. The time and energy it takes to manage my autoimmune disease (doctor’s appointments, research, rest, non-traditional treatments, managing nutrition, etc.) is time and energy I’d rather devote to my family. The greatest challenge, however, is balancing life so that I’m living and enjoying it, but not so much that I experience a flare or regression. There is truly nothing worse than having to tell your family that you can’t fulfill plans you made together.
Thankfully, my flares are fewer than they used to be. When I’m in remission, I can shoot hoops and bump a volleyball with my girls. We can do yoga together and go on short bike rides. I can manage the pain well enough to enjoy gentle activity. Some days I almost feel normal.
I cherish those days.
Because I can’t work full time, I have been able to volunteer in my girls’ schools, at church, and in multiple facets in the community.
A cherished mentor once told me that when you’re feeling sorry for yourself, do something good for someone else.
I get to fill my cup by serving others. And my schedule is flexible. I can be present for my family when they need me. I can drive car pool and attend my girls’ events.
Occasionally, the guilt of what I cannot do creeps in and scratches my heart like a grizzly bear claw. But perhaps it’s okay that I’m not the mom I wanted to be. Perhaps our relationship would be strained if I coached my girls. Maybe they learn better from someone else. Perhaps by seeing me struggle and persevere they will learn determination and how to overcome difficulties in their lives. Perhaps their awareness of their own food and environmental allergies, nutrition, and the importance of balance in life will make them healthier adults. Maybe by taking care of me when I’m sick, they will learn empathy and love in a way they might not otherwise. Perhaps it’s part of their journey and their future and will influence their career choices.
Perhaps I’m exactly the mom they need even though I’m not the mom I wanted to be.