11/11/2011

Ruthe Rosen

Ruthe Rosen shares lessons learned during her family's yearlong experience living through terminal illness.

We had no idea our lives would change so significantly.

Up until Jan. 7, 2005 my family enjoyed the perfect life. Well, OK, maybe it wasn’t perfect, but let’s just say it was normal. But things changed drastically overnight. My 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, so sudden and severe they would drop her to her knees in agony. After one episode we decided she should 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, we did more than cope with the unimaginable; we embraced it. In our love and faith we 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 chemotherapy 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.

Looking back now, I can see how we immersed ourselves in the ordeal of taking care of Karla. We discovered that she had amazing courage and unwavering optimism. 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.

I want to offer you some of the things we learned from our experience. I hope you can read this and learn that there are ways you can try to maintain a sense of normalcy in your lives and sustain hope as you battle the most serious illnesses. I hope you find these ideas valuable and insightful.

1. 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.

2. Plan for your tomorrow but live in your today.

If you spend your time worrying about the if’s and 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.”

3. Reserve the right to crash at any time. Embrace the crash when it comes.

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

4. 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.

5. 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, 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.

6. 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.

7. Even if something terrible is happening, it 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.

8. 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 every day with 100 percent hope is a choice. And just remember: Never. Give. Up.

Ruthe Rosen (www.rutherosen.com) is a family advocate, speaker and author. She wrote Never Give Up - How to Find Hope and Purpose in Adversity to pass on the meaningful lessons she learned from living with Karla’s cancer. She also cofounded The Let It Be Foundation (www.theletitbefoundation.org), a nonprofit organization that helps families with children who have been diagnosed with life-threatening illnesses. Since 2006, the foundation has organized more than 100 community outreach events, brought together more than 3,000 volunteers, provided monthly support for 30 California families, and benefited hundreds of children through their hospital programs. She lives in Chino Hills with her husband and their two boys.