What We Learn from Children Diagnosed with Life Threatening Illnesses

Ruthe Rosen
Ruthe Rosen

By Paul Krupin

They had no idea their lives would change so significantly.

Up until January 7, 2005 Ruthe Rosen enjoyed the “perfect life.” Well okay maybe it wasn’t perfect, but let’s just say it was normal. But things changed drastically overnight. Her daughter Karla was diagnosed with an inoperable tumor at the age of 14.

She was in the middle of her early teen years with all the excitement, drama, mood swings, hormones, and changes those early years entail. But then there were the headaches, that came suddenly and were so sudden and severe they would drop her to her knees in agony. After one episode they decided to go get a CT scan.

Then the phone call came. There would be no dance practice today. They found a mass growing on Karla’s nervous system.

For one year, Ruthe Rosen and her family did more than cope with the unimaginable, they embraced it. In their love and faith they found the strength to be there for Karla in every way. Karla had brain surgery and was in and out of hospitals (one stay was for an entire month). She had several sudden emergency room trips, bouncing back and forth between doctors. She endured chemo therapy and radiation treatments daily, simultaneously.

For a while, she regained her spirit and even went back to playing on the soccer field. She amazed everyone. But after a year of hopes lifted and hopes dashed, 15 year old Karla suddenly lost her fight and died of inoperable cancer.

In Never Give Up, Ruthe Rosen tells the story of how she and her family immersed themselves in the ordeal of taking care of her daughter. She discovered her daughters’ courage and unwavering optimism. She realized that although she was scared she never succumbed to self-pity or despair, and because of her spirit and uplifting outlook, neither did the people around her.

Drawing upon the wisdom and personal experiences she acquired, she skillfully takes the mystery out of the many lessons to be learned from her daughter’s experience. She describes how to provide caring support that allows the family to maintain a sense of normalcy in their lives and sustain hope as they battle the most serious illnesses. She offers important and helpful guidance for those forced to face the reality of being a caregiver for a seriously ill family member. Here are just some of the valuable insights:

Embrace the journey. Take one day at a time.

In order to embrace it, you must first accept it. You don’t have to understand it all nor be able to figure it all out, but no matter how dark your struggle, embrace every single moment of it or you will miss the opportunity to find joy and purpose.

Plan for your tomorrow but live in your today.

If you spend your time worrying about the if’s and what might’s instead of enjoying the right now’s it will rob you of your joy today. Sometimes you just have to say, “If it’s not happening and it’s not a fact, then I don’t want to talk about it.”

Reserve the right to crash at anytime. Embrace the crash when it comes.

It is okay to be sad, mad, depressed, empty, lost…embrace it! Feel! Live it! Then get the heck out of dodge so it doesn’t consume you.

Stare down your fears. Look them straight in the eyes.

Don’t turn and run, because if you can find the courage to look it in the eyes, you have just accepted one of God’s greatest gifts of strength.

Maintain a sense of normalcy and you will discover your new normal.

Continuing the activities and the routines as best as possible for your other children allows them to still be kids and not bring worry and fear to them. Keep it real, and so you don’t lose yourself in the chaos of circumstances. When you find yourself experiencing rare moments of normalcy, don’t feel guilty, soak it up and enjoy it and give yourself the gift of not worrying about tomorrow.

Just because life has taken away some of our choices, doesn’t mean it has taken away all of our choices.

Make the ones still available to you. Sometimes being selfish is the most generous thing you can do you for a sick loved one.

Even if something terrible is happening doesn’t mean you can’t laugh,

Find humor in the moments that you can. True laughter shared with a loved one, no matter what the circumstances is never inappropriate.

Expect days that you will doubt your faith. They will come.

And when it happens, get your strength from what you know not what you are feeling at the time. Faith isn’t about believing everything will be all right; it’s about knowing you’ll be prepared when it isn’t.

No matter what the percentage of the prognosis given to you by your doctor; living everyday with 100 percent hope is a choice. And just remember …. never give up.

About the Author

After Karla died, Ruthe Rosen and her husband Michael embarked on a mission to reach out to strangers who need help and return the kindness they experienced from the remarkable girl who refused to be anything but grateful. They created The Let It Be Foundation, which helps families with children who have been diagnosed with life threatening illnesses or medical conditions. The Let It Be Foundation provides such services as housekeeping, grocery shopping and meals, opportunities for family recreation and help in meeting the needs of siblings during difficult times. They live with their sons Brandon and Cole in Chino Hills. Proceeds from this book will benefit the Let It be Foundation (www.theletitbefoundation.org).

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