I sit snug on the couch with my makeup on and a big smile on my face waiting to welcome my daughters home from school. I try to make sure I look nice, even though I haven’t left the house all day. I know when they go to school they see their teachers dressed nicely and running up and down the halls all day, full of energy. I know they must wonder why their Mom can’t do the same. I know they must compare me to the others they see in the typical world.
They’re getting good at pretending to be okay with my hospital stays, which happen at least two to three times a year on average. All three of my daughters have anxiety when they hear I have a doctor’s appointment, even my oldest who’s in college. I reassure them, when I can, that I’ll be home in a few hours. They’re always relieved when that reassurance I give them proves to be true, as I walk through the door after an appointment.
It’s been a particularly tough year for us all concerning my health. At the age of 46 I had to have a total hip replacement. I was diagnosed with Lupus in my twenties, which turned out to be a diagnosis of a very similar autoimmune disease in my thirties called Behcet’s disease. Both are often treated with steroids to reduce dangerous inflammation levels. The years of steroid use to control the symptoms of my autoimmune disease literally destroyed my hips. Add the fact that I’ve been a brittle Type 1 diabetic since the age of 17, relying on an insulin pump 24/7, and you’ve got most of my health history.
I’m not complaining. I know I’m blessed to have diseases’ that have treatments available. I have chronic illnesses. I’m blessed not to have a terminal illness. I can live with the diseases I have. And trust me, I do. I live as much as possible. Not just for me, but for my girls.
Living looks and is different for a person who suffers with a chronic illness. I’ve heard the whispers of, “She’s just lazy” or “She’s crazy and always has something wrong with her”. I’ve learned to accept that not everyone will take the time to understand what living with chronic illness really means. I pray my girls will learn to overlook what some people say and what many don’t understand. I pray they will remember how much living we have done, even if it has looked a little different from the way their peers have done it.
I plan outings, vacations, even the simplest of things around my energy levels. I plan rest days before big days that are to be spent being a typical mom with my kids. I then plan a rest day to follow a big day, so I can get back to my best self for them.
I pray they notice how much I do to make sure they have me present with them as much as possible. The days when I don’t have the energy to prepare meals we eat takeout, microwave dinners and meals prepared by family and friends. On the days when I am up to cooking, I’ve been known to cook enough to feed us for several days, because I know my days of having that kind of energy are unpredictable, and not to be wasted. I hope they remember the tastes and smells of our homemade meals.
When you live with a chronic illness you have a lot of time to sit and think about the things you hope and pray to see happen for your children. Even though your illness may not be terminal, it makes you look at your life with a fainting heart. A heart that’s full of so many hopes and dreams for your children. A heart that never takes a single beat for granted, because that beat is another moment spent with your loved ones.
For my girls, here’s what I hope they learn from watching me battle this chronic illness.
I hope they are confident in their strengths and use them to discover their very best purposes.
I hope they realize that it’s okay to acknowledge their weaknesses and accept help from others when they need to.
I hope they use the gifts they’re given to serve others.
I hope they learn the importance of self preservation and learn to never feel guilty when they need to put it into practice.
I pray for my girls to find contentment and joy in the lives God has given them.
I pray they appreciate their lives as the precious gifts that they are.
I pray that the good moments will be prominent in their memories and those moments not be overshadowed by the doctors’ appointments, days spent resting, medications and hospital stays.
I hope they never forget the selflessness of those who always filled in the gaps in my place… their Daddy, their Grandparents, their Aunts, Uncles, cousins and family friends.
I hope they have learned that sometimes doing less means more.
I hope they will recognize all the blessings we have received as a family because of chronic illness. A family who may have been forced by it to live a good bit slower in a world that never slows down, and a family who grew so much closer and stronger because of it.
I hope and believe that they will remember the good things most of all.
Kathy is a wife and stay at home Mom of three girls. She and her modern family live a slow paced life in a small southern town in Georgia. Kathy and her husband Keith have a uniquely blended family, having one biological daughter, and two internationally adopted daughters. They often draw attention when running errands around their small town. It has nothing to do with the obvious differences in their physical appearances and being a blended family…it’s because of their inability to be “normal”. Normal is boring and it’s one thing the Johnson family has never been accused of being.
Kathy finds writing cathartic and hopes to inspire others through her blog and social media posts to laugh at as much as possible along the roller coaster ride called parenting. She finds the twists, turns, ups, downs and black out tunnel moments exhilarating, exhausting and ever so worth it, every single day.
Kathy has been a featured writer in Connection Magazine. When she has a chance to catch her breath, she writes about her family adventures on her blog Jesus And Duct Tape and on Facebook.