As an Autoimmune Mom, you learn very quickly that you have a choice, to let go of the mom you thought you would be and become the mom that you are. I suffer from Cold Urticaria as well as serious lung issues thanks to a pulmonary embolism four days after the birth of my daughter. Simply, my internal thermometer is broken; any change in external temperature can cause me to hive, and then begin a serious anaphylaxis episode.
Simple chores cause me huge difficulties; washing my hands, grabbing food from the fridge (forget the freezer), walking on the floor with bare feet. Any of these can cause coughing, wheezing, debilitating fatigue, headaches, vomiting, and extreme joint and muscle pain. My cough is so severe that my pulmonologist worries about cracked ribs. I have daily episodes; opening the front door to say good bye to the children is often a serious issue. But my bigger triggers are often from air-conditioning, the grocery store, and I can’t get into even a heated swimming pool. My daily activities often leave me curled up on the couch, not being able to move from the pain and cough of this disease.
Is my life hard? Yes. Is it a challenge raising a 9 year old and a 7 year old with this condition? Absolutely… But, it could always be worse. Always…
So how do I make it work? How do I get to be the mom I want to be? Simple, I make the best of my talents inside.
My husband let me turn our beautiful dining room into a craft zone so that we can paint, draw and make a mess and let our creativity flourish. On good days we cover the kitchen in flour. We bake; make cookies, muffins, cake, whatever sounds good at the time. We tend to plants inside since gardening outside can be hard. I’m great at cards, board games and puzzles. We have dance parties where I turn the music up so loud the room shakes. I do very limited yoga with my kids, just enough to help me stretch and on the bad days, we watch movies, and we all curl up in my bed with snacks and enjoy each other.
My son calls me Snuggly, because he says no one snuggles him better…
I do get frustrated when I can’t attend any soccer games because it’s too cold, but I can host the Daisy troop in my kitchen for world class cookie decorating.
I tell my kids that it’s good to talk about how mad it makes us. But, I also remind them that if I go to an event that I shouldn’t, I could end up in bed for days. So I make the decision to stay at home and wait for them to do something special, like Legos, Angry Birds, or making potholders! They are now old enough to see the merits in choosing the better option.
It has also given my kids the chance to be responsible and big helpers. We have our groceries delivered in the winter, and they put the cold and freezer items away, what a great job for the kids. They bring in the newspaper and take the trash outside; they have learned to shower with little help. Sure, my princess has shampoo dried in her hair, but she is proud of herself for taking on the big girl job at seven. And I sit and watch her sing in the shower.
That is priceless…
I have learned that this disease is humbling, so I have had to ask for help, but it has also taught me to let go of perfection. I choose happiness for all of us over perfection. I can’t do it all, I can’t even do 50%, so I make the work I do meaningful for all of us.
I think sometimes, I may be more present with my kids in my disability than some moms who have all the working parts. I long for the time with them, I treasure it and I make the most of what my body can do each day. I give thanks for what I can do.
I can do all this, because I have a husband who does everything, is my biggest champion, and the love of my life. He makes everything better, and with our beautiful family he makes us all laugh. We laugh all the time and that is medicine for the soul.
And when we find limited success from a new treatment, we exploit it and make it work. But we are at peace with two important things. We are teaching our beauties life isn’t perfect, nothing is… But, what we can do is love each other, and have the most fun with this life we have been blessed to have. And they are learning compassion for people with disabilities and a willingness to help others.
Now that is something you would never want to change.
About the Author
Kathryn Ferguson is a writer, advocate, blogger and autoimmune sufferer. She chronicles her journey at pilgrimagegal.com. A pilgrimage is a journey of spiritual significance, she is working on that, while managing her faith, family, and a chronic disease. She resides just outside Washington, DC, with her husband Jeffrey, two children and an emergency supply of chocolate.