Healing with Naya’s Words

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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.

Eight Months Later, “Big Data” and The Parkway Run

It’s been a long 8 months. Full of heartache, sadness, emptiness..and hope. Our friends are amazing with their love and support. We’ve met incredible people dedicated to curing childhood cancer and children’s health. We’ve learned about the obstacles that are in the way, but can be overcome. We’re figuring out how to really make a difference.

We also know we have to move faster. Cancer is the #1 killer of kids under 20, and more kids today are suffering from cancer – including one of Naya’s closest friends. I cry for each child I know, and it’s one too many.

Our first lesson – data needs to be shared, in real time. Real time genetic, clinical and research data shared between scientists surfaces new ideas, enables innovations and accelerates finding cures. More ideas will lead to curing childhood cancers.

Our second lesson – private funding is critical. The NIH has limited funding and the grant system creates competition for that limited funding. This can keep institutions from sharing data real time. Not all children’s hospitals share data. Isn’t that crazy? Knowing that infuriates me!

Donors and a few leading institutions, including The Children’s Hospital of Philadelphia and the University of California at San Francisco, have created consortiums that share information between scientists and encourage collaboration between specialists (immunology, oncology, neurosurgery and radiology). With their leadership, more hospitals are jumping on, and sharing data. Yes, this is “Big Data” for those of you interested in technology.And, this enables Personalized Treatments, aka Precision Medicine.

Private funding is required to fund these new trials and consortiums. That’s where we you come in. It’s time for the Parkway Run. We want to raise more than $100,000 again this year.

Sign up to run or walk with us, and please donate.

http://chop.donordrive.com/team/NayaIMG_1486
http://www.nayafoundation.org/donate/

Eight months ago, Naya passed away. Her absence is felt deeply in our hearts every day. I miss her laughter, and love of simple things – from making crafts, to swimming, playing with the dogs and making dinner with Hank. Naya’s absence is the driving force behind our efforts to find cures for childhood cancer. That was her only wish, and we’re committed to making it real. We love you Naya.

Changing Lives Is Withing Reach

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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!

Birthdays Are Gonna Be Hard

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Reflections;

I’m the photographer in the family and have probably taken at least a terabyte of photos of Naya, Zak, Amy, the dogs, and friends and it still isn’t enough!  I find myself combing through the folders and folders of pictures on our server looking for new images and then realize there just isn’t going to be more than what already exist of my beautiful, creative, funny and smart girl.  For all of us time has been frozen.

Anger;

Most of what I feel these days is anger at not being able to protect, or keep my little girl safe, and well.  It is such a empty anger because there isn’t an immediate recourse.  I, and all of us, have to take the long term view and fight cancer and honor Naya by raising money for research to help the doctors who have dedicated their lives to uncovering a cure.  It is the path that exists so please help us and help the medical teams anyway you can.

Future;

Naya lives on through all the memories she imprinted on me every time I had the chance to enjoy her amazing presence.  She will forever be my future marine biologist and I will forever be better for all the amazing time she and I spent together.

Happy Birthday Naya, I love you!

Dad

Naya’s Day

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Tomorrow would have been Naya’s 12th birthday. It seems like a stupid statement, but only this weekend did I completely understand that the last images I will have of her are from when she was just a child, just 11 years old. I’ll never see her turn 12, 18, or 20. No pictures of the future with her. She is just gone from our lives. How can it be? It still seems like a bad dream.

For the last two years, I’ve tried to look at the positive side in life and appreciate each day and experience. I’ve tried to be positive, open, kind, forgiving and loving. I’m not in the mood right now for any of it. Why? Because it really sucks to lose Naya.

I look for signs, only to wonder if I’m just seeking what’s not there. I pray that she hears me, or sees me. When I drive alone, I imagine she’s with me holding my hand in the car and singing a song. I think about her all day, and my heart is tied to her forever. I talk to her daily. I hear her yelling at Zak,and laughing at the dogs.

I’ve organized Naya’s pictures, voicemails and mementos so I never forget anything about her. Even so, I’m realizing I will forget things. And that is scary. How can I possibly remember it all?

I’m realizing that the 5 stages of loss or lessons on the first year of grief are so shallow. There are no stages, and there’s no way a quick read brochure can alleviate my grief. There’s nothing good or right to say. There never will be. Sometimes, I just want to stop listening. But then, sometimes, I can’t stop listening.

I feel an immense sadness from these realizations. A new sadness. It’s different from losing her, which is still fresh and so, so painful. It’s sadness mixed with fear and anger. It’s about the fear of losing precious memories of my dear daughter. It’s about losing the future that she was robbed from living. It’s about shutting people out or letting disengenious people in.

Tomorrow, I’m taking the day off. I don’t think it’ll be a celebration. But it will be in her honor. I’ll ride her horse PJ and eat at her favorite restaurant. I’ll work on her foundation. I won’t work or even look at my phone. That’s what she would have wanted.

To honor her tomorrow is to also renew my faith in the goodness of people and life. I want to live my life happy because she would want me to be happy. I want to remain positive because she was positive. I know she loved me deeply, and that gives me so much strength to love others in the same way. I was so fortunate to have Naya. Tomorrow will be a day where not a moment goes by where I don’t think of what she represented: joy, love, life, strength and perseverance. It’ll simply be a day dedicated to my Naya, just as her birthday should be.

Treasures Remind Me….

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I save things. Anything with any sentimental value is saved. Photos, kids artwork, cards and favorite things the kids kept around when they were little. I have at least 4 places to store photos so I never lose them, and a large container of all of the cards and well wishes Naya received when she was going through her illness.

On Mother’s Day, I didn’t do anything out of our ordinary routine. Hank and Zak made a nice dinner, and bought me a beautiful necklace. We speculated about what Naya would have done for Mother’s Day, and concluded she would have made me a special craft and wrote me a deeply touching card like she always did.

Hank and Zak both wrote meaningful cards which, of course, I need to keep forever. Today, I decided to put the cards away, and found myself in a small project to organize the cards that were piling up in my office. I have hundreds of cards from the last 2 years. My desk was overwhelmed with cards, and I was beginning to use my floor as storage. The mess was adding to my anxiety and inability to concentrate.

My chore to organize chaos became a treasure today. I read every card Naya and Zak ever gave me. Every time I read their words, I was reminded how much they loved me as their mom. It was as if Mother’s Day was happening again for me this year.

I have every card Hank gave to me since we were dating. I’m looking forward to reading those tomorrow, and discovering my next buried treasure. And, then I get to follow with cards from my brother, Dad & Mom.

We are a close family. I’m thankful that Naya knew how much we loved her, and that Zak feels our love and knows how to love back. Someday, Zak will go through some of this stuff. When he does, he’ll be reminded of how much his sister, Hank and I love him.

Raising the World’s Empathy Quotient

I’ve been on social media sites for years. Social media was a part of my job as a marketer. Over the last two years, social media has been a lifeline for survival and therapy for me as my daughter fought and lost her battle to cancer. Now, I think of social media as a lifeline for others, and I feel a responsibility to help others in need of a voice. I’m in a position, both as a person and professional, to make the world a better and more empathetic place.

My voice is getting louder as I help causes and efforts very close to my heart – pediatric cancer cures, STEM and advancing women. Recently, and with the help of social media, I’ve expanded my voice to areas that needs more empathy and understanding. Whether it’s influencing change in the State of Indiana, sharing stories that might help others, getting the world out about Elon Musk’s ideas to reduce carbon emissions, or listening to the needs of minorities in our inner cities – I’m trying to do my part to make our world a better place.

Many of you already act as a megaphone for others. For those of you who do, thank you. I’ve learned more about the world through your words and images, and am a better person as a result. I’ve also met some people who are changing the world and are heroes in their own right, and they are my source for inspiration.

But many of us still back away from stating our opinions. We’re worried about losing “friends” and “followers”, causing controversy, or seeming political. When I retweet or post something, I think about those things too. I don’t believe the “opinions are my own” will save me from repercussions. The stakes are high the more you put yourself and your brand in the public domain.

You can state your opinion and be responsible. You can state your opinion and not be political. All you need to do is state your opinion and be human, hopeful and not hateful. Let’s raise the world’s empathy quotient and make it a better place.