I am a rare mom. For those that don’t know what that means, rare moms are the silent heroes of the world parenting to the best of their abilities with a rare disease.
Before I was a rare mom, I was a super mom (also known as crazy, helicopter mom). When my kids where 6 and 4 respectively, I put on a show-stopping luau for their birthdays complete with hula dancers and a fire show. I taught them to ski, took them to dance classes, helped coach little league, was room mom in three classes, and lead countless other activities that filled our days.
Then I got Myasthenia Gravis (or MG). The name translates from Greek to grave muscle weakness and in only a few months, I went from hero to zero.
My life stopped as a mother. The super mom was now “bedridden, can’t even talk mom”. I had to hire someone to look after my children while I lay helplessly in bed and watched them live their little lives without me.
The self administered guilt and shame I felt for abandoning my children was unbearable. The harder I tried to get out of that bed, the worse my disease attacked my body.
My kids would come into my room after school to fill me in on their day but that just made me sadder because I wasn’t a part of it. Then I got worse and they would visit me in the hospital. I wondered how much damage I was doing by inflicting this trauma into their little lives. Sometimes I wondered if they would be better off without me. I wasn’t a participating force in their lives anymore anyway.
I was just a lump of flesh withering away.
Then one day my youngest came into my room. She had a bad day at school and needed some mommy love. She crawled in bed with me and got real close. She didn’t want to talk, or learn any of my famous life lessons with a teachable moment, she just wanted to lay next to me and feel loved.
Then it hit me. Motherhood isn’t about doing, motherhood is about being.
My baby just wanted her mommy. She didn’t care that I couldn’t make her dinner and she was probably very happy I couldn’t lecture her about positivity. All she needed was her mom to be there when she needed a hug.
Soon after, I began to forgive myself for getting sick. I realized that what you do for your children isn’t as important as how you do it.
I began to reframe my definition of motherhood after that. That precious moment with my daughter taught me this:
The best thing you can do as a rare mom is to love your children in whatever capacity you can.
By simply laying next to her (which was all I could do at the time), she could feel how much her mama loved her and that everything was going to be alright. That was all she needed to feel better.
I eventually climbed out of bed and began to feel better. I started the teachable moments again and can do some (not all) of the things I once did. Our life is a little slower now and our calendar not as full but I don’t think they miss any of it. They still climb into bed with me once in awhile when they are having a bad day which make my heart melt.
#RareMoms are not lesser moms. We love just as big, maybe bigger, because we have less clutter in our lives and can focus on what matters. We know that our number one priority is to love our children. The laundry and to-do list can always wait.
Lisa Douthit is the author of Amazon’s #1 bestselling book, Wellness Warrior – Fighting for Life in Fabulous Shoes and an Integrative Health Consultant who is passionate about healing from all perspectives. After struggling with multiple bouts of cancer and autoimmune disease, no one understands the physical, spiritual, and emotional rollercoaster better than she does.
As one of the 40 million American women currently suffering with an autoimmune disease, she made it her mission to have a voice for all those with an invisible illness that cannot, as well as share the understanding of lessons she learned to help us all feel and be better. She has a private Facebook Group called Wellness Warrior Tribe for all those with chronic illness looking for support and encouragement. For more out of the box thinking that is guaranteed to bring you joy, Like her Facebook Page here or join the tribe here.