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Uncle Johnny's Lifelong Battle


Sometimes, I will have guest writers come on the blog. For today's post, I have asked my younger cousin, Taylor, to share a piece of her story, and speak about how illness has affected her life.



"Illness is something our family can’t seem to stray from. We lost my Uncle Jimmy (Brittany's Dad) to a heart attack due to his enlarged heart and we lost my Aunt Annie (Andrea) to cancer. Unfortunately, illness has struck our family in other ways, as well.


For those of you who don’t know me, my name is Taylor Husong. My dad, John, was brothers with Brittany’s dad, Jim.


My dad was diagnosed with a chronic disease called “Scleroderma” and “Raynaud’s Disease” at the age of twenty- two.


Scleroderma:

1. “hardening of skin”.

2. A group of autoimmune diseases that result in change to the skin, blood vessels, muscles, and internal organs.


Raynaud's:

1. Limits blood circulation.

2. Causes areas of body to feel numb in cold temperatures.

3. Effects quality of life.



The average male or female who develops Scleroderma, develops it between the ages of 30-50. Scleroderma is a result of an overproduction and accumulation of collagen in body tissue. Collagen is a fibrous protein that makes up a body’s connective tissue, as well as skin. Now you’re probably wondering about treating this. Treatment isn’t possible. No narcotic has been produced that can stop the overproduction of collagen. There are narcotics that can help control Scleroderma, but there is no cure.


My father is age 48 now and has been living in chronic pain for twenty-six years. He has had too many surgeries to count including eight half-finger amputations and two below the knee leg amputations. He has been told twice that he’s had six months to live and by the grace of God has surpassed the limits the doctors set on him, both times.


Growing up with a parent who has an illness makes a great impact on your life. When you have a parent with a disease, you learn at a young age that life is no longer about yourself, but what you can do to help improve the quality of your parent’s life. Living with a chronically ill parent takes a lot of patience and encouragement but most importantly, it takes strength. There are good and bad days, sometimes terrible days. With each parent, those days consist of different things, different motives.


The good days are the days I realize how blessed I am. These days have less tears and pain, and more laughter. They consist of movie marathons and chocolate milk. They contain stories and lessons. On these days, I understand how much I have learned from having an ill parent. I have been taught patience, understanding, faith, and the power of prayer. I have learned to never give up, to never stop trying. I have been taught to never judge a book by the cover, because there is always more to a person than we will ever know. I have learned how to stay positive in the most negative situations. Most importantly, I have learned how to love unconditionally.


The bad days are the worst of them all. These are the days filled with hospitals and emptiness. Anxiety. The worst anxiety is when you’re in the waiting room. Nothing is as unfathomable as nights spent in the hospitals, next to your parent’s bed, only to hear that the doctors don’t have answers, or even worse, have answers you don’t want. These are the days that you wish the world could pause. You can’t help but to feel as if it is unfair that the rest of the world is continuing, when your world is breaking. Nothing gets much worse than days like these. There aren’t enough prayers or tissues. There aren’t enough arms to hold you or words to help you see the light at the end of the dark tunnel. If you have never had a parent with an illness, you have not experienced true heartache and pain. You have not experienced praying to God, begging, for your parent to have one good day, without pain and suffering.


It is like we are in our own group: all of us children who had or have an ill parent. We must stick together. God didn’t say it was going to be easy, but he said it was going to be worth it."


- Taylor Husong





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