Here’s What I’m Hoping My Kids Learn From My Chronic Illness

6
338

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.

6 COMMENTS

  1. Kathy, you just melted myheart!!! You are so genuine inside and out. Your kids are so blessed to have you and your love ffor them. They are and will be selfless, kind, and compassionate girls/grown ups! Thank you for sharing this. I’m waiting on that book for you to write. It will be a best seller!! I’m so proud of you, and love you very very much. Aunt Brenda

  2. I applaud you. I have been diagnosed with fibromyalgia. Some days it is so hard. I have twin toddlers so I am always on duty and I struggle so much. I also have two teenagers and I wish they were as understanding as your kids. I have to be tested every 6 months for lupus and it scares me to one day be told it’s attacking something in my body. I have no plans as you do. I just try to make it through every day as I can. Good luck to you!

    • Regina, Making it through every day is a great plan and in the midst of a chronic illness flare it’s about the only plan you need to concern yourself with. Especially having teenagers and twin toddlers. God Bless You. I hope you can reach out to those around you, be it family or friends and help them understand your chronic illness better and hopefully that will encourage them to offer you some respite. I would also encourage you to check local hospitals or doctors offices for lists of chronic illness support groups. I know it helps me to speak with others who really understand what it is to live everyday with an unpredictable chronic illness.
      It sounds like you have a great medical team working with you and I pray your Lupus tests continue to remain negative. Treatments have come a very long way for autoimmune diseases, so if your lupus test ever were to be positive just remember that and continue to be proactive in pursuing the best medical care possible. God Bless you and I pray for many, many non-flaring days ahead for you and your family.

  3. I would love to talk with you! My daughter fought Lupus since she was in your last year of high school and she received her wings on April 29th of 2017. I’m writing to you because a lot of people aren’t aware of the disease until it has progressed and I and some other ladies in my town of Topeka, Kansas are reaching out in the community to make sure people are aware and know some of the early signs of Lupus through some of the people in our town who have it and would like to speak to the public about it. I wish I could of found this article sooner and may of had you has one of our speakers. Please contact me maybe we can have you speak at another program.

    • Thank you Aunt Brenda, You’ve always been my role model. You are the sweetest, most supportive Mom to your wonderful kids and the best Aunt any girl could ever ask for. Thank you for your endless support and love!

    • Thank you Patricia. I’m so sorry for the loss of your daughter. I know she must have been such a fighter and you are as well by continuing to keep her spirit alive in your community service plans. Awareness is so important for diagnosis and also for care givers of those who are struggling with auto immune diseases. God Bless You and feel free to communicate with me via email…hodyalp1971@gmail.com

LEAVE A REPLY

Please enter your comment!
Please enter your name here