Inaction Is a Disease

In less than 2 weeks, I've learned about five people I know either very or pretty well, that are dealing with a battle with cancer, and a battle to live. Their ages...12, 27, 40, early-40's and 43. And, if you knew them, you'd understand that each one is a person that has the ability to change the world.

I know you're thinking "Well, that's Amy. She is in the 'world' of cancer.  That's not me. Cancer is rare, especially in kids." If you are thinking any of this, realize that cancer is not rare, and it kills more children than any other disease. No disease comes close! Cancer. It's about to take over heart disease as the #1 killer. 

I ask myself everyday - why isn't this changing? What's the fundamental, underlying reason why we aren't urgent about childhood cancer? How many videos do we have to see of kids battling this horrible disease to stand up for kids?

The change in the last 20 years is incremental. "Incremental" is my latest word to define disgust. 'Incremental' represents death. Extreme? Maybe. But, maybe not. If it's you, or your kid, than not.

I've come to realize that there is a fundamental disconnect with knowledge and action. This inaction is, in itself, a disease. A disease that kills.

My time is spent figuring out why. Why is this not getting the focus it needs when the data is so clear, and the stories are so upsetting? Kids are losing their future. What's going on?

Let's figure it out together. Join Us. @nomorekidswithcancer or nomorekidswithcancer.org

Healing, Naya's Advice and Forgiveness

Girly-girl Naya dressed as Michelle Obama in the 4th grade

Naya passed away about 9 months ago. She was 11 when she died from brain cancer. I never thought I could survive the loss of my child — a nightmare I wouldn’t wish on anyone. I’m in a club of survivors I wish didn’t exist.

Yet, here I am. Depending on the hour, I can be happy or sad. I am more happy than sad these days, and my mind fills with more good times and joy than the horrific treatments she endured during her illness.

I’m healing because of Naya’s own words. A child’s view on life is not like an adult’s view, as I’ve come to understand with the help of a wonderful therapist, Naya’s doctors and many hours of introspection. Naya could learn that her tumor was growing in the morning, and play in the pool in the afternoon. One week after brain surgery, her first question to her doctor was “when can I ride my horse?” Only her bald head and feeding tube gave away her cancer and illness to others. It was never her attitude. She was known for her smile and girly-girl nature, big heart, love of learning, compassion and intelligence, all while she withstood treatments and fought for her life.

If you’re in a traumatic situation, helping a loved one through a terminal illness or going through a very difficult time, I hope Naya’s words and inspirations help you feel good for just a moment, and help you heal.

At age 9, Naya purchased an engraved wooden box for her dad’s birthday with a quotation from Abraham Lincoln, “It’s not the years in your life that count. It’s the life in your years!” We didn’t know she had cancer, and we had no idea how important Lincoln’s quote would be someday. She placed a magnet on our toaster with the same quote, which serves as a daily reminder that each day is an opportunity to do something worthwhile.

We can’t predict if we’ll be on this earth 2 years, 11 years or 80 years, so now matters. More than “living in the moment”, for me, it’s about making life and time matter at any moment. At first, my interpretation of that phrase meant obsessing about curing childhood cancer through fundraising and telling Naya’s story. I wanted others to share my anger and do something about it. My obsession didn’t help me because it kept me in pain and slowed my healing. Now, I mix it up — going to Taylor Swift with a friend, shopping, strengthening my relationship with my husband, spending more time with my son, being my best at work, playing with our dogs, riding our horse AND continuing to support people working hard to cure childhood cancer. These are all parts of life Naya and I shared, and by continuing to do them, we continue to share them in spirit, between our souls and in our hearts.

Another wooden box she bought before she was diagnosed has more good phrases. She kept this box for herself in her room, and now it’s in our bedroom. Love Always. Laugh Often. Dream Together. Share Joy. And my recent source of strength, Forgive Quickly. I’ve had my fair share of hurt, pain and grief in my life. In the last three years, forgiving has been a newly developed muscle. Forgiving is very hard depending on who and what I’m forgiving. But, forgiving helps me move forward. Forgiving doesn’t have to be shared with the person I’m forgiving; it’s my secret and my freedom. As I forgive, I realize the person I’m forgiving is flawed too, and their flaws led to the actions I resented in the first place. That’s pretty powerful to understand, and creates the ability to forgive quickly again and again.

Naya also loved these phrases, and they are all present on her fundraising shirts and posters…Fight Like a Girl. Smile. Enjoy Life. Laugh. Never Give Up. Stay Strong.

I’ve stayed strong throughout my life. I’m honestly sick of being strong, being complimented on my strength and people telling me how strong I am. If you’re a friend of mine, please accept my apology if you told me I was strong. I know it was well meaning and from your heart.

Staying strong is a necessity to survive. I am trying to live by Naya’s other advice: Laugh, Enjoy Life and Smile. I KNOW Naya would not have wanted me to live an unhappy life filled with sorrow. I also know she wanted me to help other kids and help cure childhood cancer. So, simply, my daughter’s words to laugh, enjoy life and cure childhood cancer are my compass and healing remedies. Her words have given me permission to be okay, be happy and make a difference. If you’re my friend, flatter me on my smile or get me to laugh. Help our cause. You’ll make my day, and fulfill her dream.

We all have times that we remember fondly and will never forget, even in times of great loss, hurt and pain. Mine were Naya’s words…

“Mom, I love you.”

“Mom, you’re beautiful.”

“Mom, thank you for loving me so much.”

“Mom, if I don’t make it, promise me you’ll help other kids with cancer.”

“Mom, I’ll be okay. It’ll be okay.”

One of my closest friends reminded me that Naya entered this world and left this world in the arms of her parents. She told me that there is probably no better way to leave than in your parents’ arms, even though that’s not what any parent wishes. I know my friend is right. Naya wanted nothing more than to be with her brother, her dad and me. We know so because she told us.

In my experience, healing comes from the inside, but those who love my family and me, and people who shared our experience have been so important to my healing. Naya loved us, and her words have been the most important source of my lifelong journey to heal.

Changing Lives Is Withing Reach

The ability to change the world is in front of us. The past few weeks have shown us that passion, activism and standing up for what is right can change entrenched ideas, and improve and save lives. We're witnessing the removal of the confederate flag, legalized marriage for all and musicians getting paid for great music thanks to Taylor Swift. 

I follow change agents including Bill Gates, Tim Cook, Al Gore, Arianna Huffington and many others who are changing education, health, wellness and ultimately the quality of our world and lives. But, it doesn't take a CEO or VP to change the world, as Alex Scott of Alex's Lemonade Stand has shown us.

MY heroes are the researchers, scientists, technologists and healthcare professionals who are dedicated to curing pediatric cancer, and fulfill my late daughter Naya's wish.

So, if hundreds of years of traditions can be changed, and devastating diseases can be cured, curing pediatric cancer is going to be one of those areas we will cure if we loudly speak up.

This summer, I will launch a campaign to build awareness of the need to cure pediatric cancer, with the goal of raising funds to help find more treatments and cures.

Please help by following us @nayafoundation or on Facebook. More to come!