Who You'd be Today

The month of October is a heavy emotional month for me. Naya was getting sicker by the day, and then one day, we were counting the days, then hours, she had left. Life turned on us too fast.

Looking for music to help me process my grief, I came across a beautiful song by Kenny Chesney, which inspired the title of the post. It fits with where I am since losing Naya. In recent months, I have been thinking more about who Naya would have become. In honor of Naya's memory, her death on November 5th and children who have lost their lives to cancer, I hope you read on and listen to this wonderful and moving song.

Dear Naya,

Three years ago, we were watching you slip away from us. Your face was so peaceful and beautiful. Your hair was still growing. Your long fingers still held my hand. You body was letting you be at peace even while a battle was raging inside of you. 

You stayed with us well past the doctors' predictions. You always had that athlete's heart, and it came through in flying colors despite cancer. Even in the end, you made the rules fit what you wanted. Your little heart let us share precious time together, in peace, listening to your favorite music and being at home. You didn't leave us in the middle of the night. You weren't screaming or crying. You just breathed slowly and quietly. You let us be with you until your very last breath, holding you in our arms. I wonder if you were intentional about how you left this world.

I knew you were out of options for many months. Even so, the thought of losing you was distant most of the time, and it wasn't until your last breath that it became vividly real. I've always hoped you didn't know what was happening. Deep inside, I believe you knew. I just hope they were fleeting thoughts, and didn't stick or cause you to be afraid. The thought of you being in fear on top of all of the physical suffering from your treatments hurts almost as much as losing you.

I'm sorry you had to endure cancer, and you were robbed of a long life. At the same time, I am also grateful that we didn't know how much time you had. We tried and succeeded at living life to its fullest with you until the end. In the unluckiest blow life could give to all of us, the cancer did not take away your personality or soul.  Look at this picture...it was just a few days before you died. I love it.  

You were selfless your entire life. The gift you left us, that you would be okay, has helped me carry on without you here. I know that every tear I shed is because I miss you and constantly wonder who you would have become. But I also know you are okay, you haven't left me, and you are with me now.

In your death, you are helping other kids. That's what you're doing today. It's who you are today. It may be your legacy, or it could just be the beginning of what you do. Your compassion, love for people and determination are felt as much as they were when you were here with us, breathing next to me. 

I hope you like this song. I miss you.

Love - Mom

Lyrics

Sunny days seem to hurt the most
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
I still can't believe you're gone

It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today

Would you see the world, would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Some days the sky's so blue
I feel like I can talk to you
I know it might sound crazy

It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today

Today, today, today
Today, today, today

Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday

Someday, someday

Amanda's Story

I met Amanda Haddock through email and Facebook. We have a lot in common. Our kids lost their lives to brain cancer, we support similar research efforts and we share a strong belief that scientists can cure brain cancer with groundbreaking research and the power of big data. Amanda and her husband founded Dragon Master Foundation with the goal of using big data to help researchers discover new treatment options for childhood cancer. With Amanda's permission, I've republished an entry she wrote that may help people move forward when losing a loved one. It helped me when I read it. This is taken from her blog This Grey Matters.

Amanda and her son David, who lost his life to Glioblastoma Multiforme

HOW DO YOU ANSWER THE HARD QUESTIONS?

Whenever I talk to a family about brain cancer, I tell them they can ask me anything. Normally they ask me sensitive questions about the end of life or navigating treatment. But sometimes, tougher questions come out. The toughest one is “how do you go on without your son?” There are many answers to this question. First, would be that my other family members need me. But second would be that my son would want me to be there for these people. It doesn’t make it any less bone-crushingly sad. On the contrary, walking through hell with these families is horrific and hard. It’s been six years since we heard the words brain cancer, a little more than four since David was taken from us. And while many point to the successes of the foundation and the progress in research that we’ve helped with, I can’t see that. All I see is the next person in treatment with no clear treatment path. I’ve been a fairly selfish person for most of my life but now all I see is other people’s need. David always had that sight so maybe he passed some of it along. 

Right now, somewhere a family is agonizing over their loved one’s last breaths. Right now, somewhere a family is hearing that the diagnosis is terminal. I know there will always be freak accidents that steal our loved ones away, but cancer isn’t like that. It’s a disease that we are on the verge of finding cures for, but each day that passes steals away another life. 

People struggle with the meaning of life, but I know that the thing that gives my life purpose is making the way easier for others. That used to be through simple things like doing my job well or making lunch for a teacher at school. Now it is by helping push scientific research forward. And I can do that even though I made a C in Mrs. Coley’s Chemistry class. And you can do it, no matter what your background is. We all have power. We all have a voice. Let’s use it to end cancer now. Right now.

Ellie

I can't sleep. My mind is swirling with everything I need to do at work. I finally gave up trying and came downstairs figuring I might as well not fight insomnia.

The house is still, so quiet. I can breathe and think. The air conditioner has a low hum that's oddly relaxing.

As I sit in the quiet and observe my surroundings, I find myself immersed in Naya thoughts and stories. They are a tidal wave tonight. 

In the family room, we have the couch she helped choose. I remember the time we picked it out. It was the week before the ER trip that changed our lives. When it arrived, she took it over. It was her couch and she appropriately named it the "girls couch". It drove her crazy when Zak would sit on it. Poor Zak would be kicked off every time. Now it's Zak's couch, and Sam jumps on it. I sometimes think Sam sits on that couch because Naya is luring him to it.

I see one of her favorite stuffed animals - Ellie - on the fireplace mantle. Her favorite one, Murphy, was always with her, even as she left the our world. Stuffed animals played a large role in Naya's life before cancer. Before she got sick, she had at least a dozen stuffed animals in her bed. At bedtime, she'd spend what seemed like an hour arranging her animals. On nights when I was exhausted, this routine would drive me crazy. But it was equally adorable and lovely. Her 3 'sister' Au Pairs - Claudia, Anna and Karolina - all have their own stuffed animal that was bought with or by Naya. Claudia's is the original Ellie. 

Naya with Claudia - the original Ellie owner.

The hospital psychologist told us how familiar things, like favorite stuffed animals, were comforting to kids going through the scary journey of cancer. She was right. Naya's animals - stuffed and real - kept her happy, comforted and feeling at home. Naya was so strong and an old soul but she was a child, terrified of the word 'cancer' and thrown into a world that was out of her control. We never fought Naya on taking Ellie and Murphy on trips, even though they took up 1/2 the suitcase. 

Ellie, a Build A Bear stuffed rabbit, kept Hank company when I was sleeping with Naya. Naya eventually bought Hank his own Ellie for father's day so that he would stop borrowing her Ellie. The second Ellie is in our room and its original Build A Bear box is in Hank's closet. I wonder if the psychologist would have predicted how important the stuffed animals were going to be to us.

There's more surrounding me. Pictures of her smiling or laughing, things she made, things we picked and bought together. I've kept the important things. The things that remind me of our experiences and life together.

As I write, I'm realizing my insomnia is because I've let life get so busy that I have starved my need to connect with Naya. I don't get to hear her voice anymore, hug her or just be with her. Everything I have is stored in my memory, and the things in our home help me reconnect with her. 

My heart has a constant wound. It's like someone ripped a huge piece of it out. I know it'll never heal. I'm okay with the pain. It's existence is important and sometimes the more it hurts, the better I feel. There is beauty in the pain as it reminds me of how beautiful my life with Naya was, and the gift I was given.

Even though I can't touch her anymore, Naya is as real to me now as she was when she was alive. Thinking about her and having her things around are my stuffed animals. They comfort me, and remind me of her energy, generosity and love of life. I feel myself more at peace now. While my heart is aching and tears are streaming, the tidal wave is allowing me to reconnect with Naya.

It's 5 a.m. and the birds are awake. I'm tired but no longer starved. A good day awaits.

Zak's relationship with Naya

Zak at age 14 wearing bands that signify his love for Naya.

It's Zak's birthday today. He's 15! He's growing up to be such an amazing you man. Smart, athletic, funny, loving and kind. In honor of Zak, I thought I'd share a little about Zak and Naya.

From the moment Naya was born, Zak was the big brother. He watched over her swing and crib, shared a room with her in Toronto, hugged her when she cried and played with her constantly. They played and fought like all kids do. But he also hugged her when she was down, and helped her when she needed it most. He gave her a hug and kiss literally every day of her life.

Zak fooled us as a kid. Hank and I thought he could do no wrong, and that Naya was the trouble maker. However, as they got older, there was a period when he tortured Naya and got her in trouble. If it weren't for Anna telling us how Zak quietly tortured Naya, we would have gone on oblivious to what he hid behind his innocent smile. 

Naya told the story of Zak's torturing to anyone who would listen. He stopped for a while when she got sick, but started up at times. He kept her feeling normal. She yelled at him, he annoyed her, and she rolled her eyes at how lazy he could be. Even when she was going through treatments, they would fight over the radio station in the car. Their fights were honestly like music to me. I wanted them to always continue. I knew when the fighting stopped, my music would stop. It meant she was gone from our lives.

Zak only cried a couple of times in front of me when Naya got sick. Early on when she got sick, and close to the time she died. He has been quietly strong for all of us. He knows when she is on our minds, and when I am lost in my thoughts about Naya, he brings me back to the real world and reminds me that life is joyful. 

There have been some statements he's said about Naya that will stick with me. 

• 'Naya was stronger than I could have ever been'
• 'She was determined'
• 'Cancer did not beat Naya'
• 'Treatments were not good enough to save my sister'
• 'She was stronger than me'

Zak is strong too. And, Naya's memory impacts him everyday. He wears his "Fight Like a Girl" band daily in memory of Naya. Her pictures and things she made are in his room. In his own way, he quietly surrounds himself with his sister.

I'm so grateful for Zak. He's been so important to our family's joy, and now our healing. It's a lot for a kid to shoulder, but I think when he grows up, he'll realize he gave Hank and me the most important gift of our life. The gift of loving life. Happy birthday Zak. 

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A Better Future

Honored to accept Naya's award with love and admiration for all that she did. Love you Naya.

On Friday afternoon, we spoke on Naya's behalf at a beautiful lunch honoring the best in Philanthropy. Naya was honored as Outstanding Youth in Philanthropy, and we proudly stood up to represent her life and her mission: No More Kids with Cancer.

We were humbled to be in the company of incredible people who, for their entire lifetime, have given back to communities and causes that are close to their hearts. From volunteering time, to giving away hundreds of millions to others, the day was full of hope, motivation and courage. There wasn't an individual that didn't feel they needed to do more, even though their life was already dedicated to helping others.

As we celebrated philanthropy, Paris was being terrorized. Out of respect for the victims in Paris and elsewhere being stripped from the basic right to feel safe, I hesitated to write about our day. Then I realized this is the perfect time to share. As social media trends about red Starbucks cups, millions, and likely more than a billion of people are in need. They are suffering from hunger, sickness, terrorism, poverty, exploitation and discrimination. Imagine what they think when we're debating about the color of a cup!

Until Naya became sick, I didn't have a full appreciation of philanthropy. To me, it meant donation dollars, and we gave more each year to hunger, diseases, schools and anyone that asked. Now, we give more money, our hearts, voices and time. Imagine a world where you would give another 5 hours to people in need, or even $5 more of your pay to causes that do good. I can. For me, giving back and the amazing people I've met give me so much hope, even as I watch TV and pray for peace in our world. 

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

Why September Matters

Every day, there's a radio or TV commercial with a well known hospital claiming to strike out cancer, save us with targeted treatments and let us hop on a bike hours after radiation or chemo. Naya went through surgery, chemo and radiation. She took a full year to regain her strength to get back on a bike.

If you have anyone close to you touched by cancer, you know the reality.

Cancer rates are going up. Cancer is predicted to become the leading cause of death overall, surpassing heart disease. It's already the leading cause of death among kids in the U.S. and growing. And, if you live in less fortunate country, the survival rates are a fraction of those in the United States.

• 1 in every 285 children in the U.S. will be diagnosed with cancer
• In the U.S., one out of every five children with cancer will not survive
• Nearly 2,000 children in the U.S. will die of cancer every year
• The vast majority of kids who do survive will suffer long-term side effects
• A child’s probability of surviving cancer is poor in less-developed countries

The runs, walks, pool parties, birthday donations, lemonade stands and childhood cancer events are critical as they are the primary source for funding new treatments and finding cures.

In less than 2 years, our donors have helped us raise over $350,000. We have also made sure 100% of the donations to Team Naya and The Naya Foundation are used for childhood cancer research and cures. So far, we've been able to commit to a clinical trial, gene sequencing and fund research to support advancements in childhood cancer cures. Thank you.

Dr. Benjamin Mizukawa, a St. Baldrick’s Scholar at Cincinnati Children’s Hospital Medical Center, puts it this way:

“When you save a child’s life, you affect families, future generations, and everyone that child will influence over a lifetime. When you support a scientist, you affect not only the current work, but all the trainees, collaborators, and personnel connected to the work, and all their future studies that will follow over a lifetime."

**Statistics from American Cancer Society, 2014

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.

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.

Going to the Radnor Hunt? Buy a bracelet and support Pediatric Cancer Research

If you're going to the Radnor Hunt, listen up!

Tracy, a former classmate of Naya's, student, and amazing young lady, is making bracelets to help raise funds for pediatric cancer research. These wonderful bracelets will be available at the Radnor Hunt for between $1.50-$3.00. Of course, she'll accept more if you want to give more :)

Buy a bracelet from Tracy and support The Naya Foundation at the same time.

When you get to the field at the Radnor Hunt, look for our logo.  Cash only please.  Thanks Tracy for your amazing talent, love and support!

My Plan in May is to Honor Mothers and Daughters - Join in

I've been thinking about May a lot these days. Naya's birthday is this month, and so is Mother's Day. I also lost my dad in May. I know it's going to be a hard time, and while I tell myself to live each day to the fullest, the anticipation of the month gets the best of me at times. I have a plan for May to help me through it, and I hope you'll join me and contribute. This month, I'm going to write or cite great stories and videos about mothers, and sometimes, about our relationships with our daughters. There is nothing more important to me than being a mom, and I have been blessed with amazing children. You have all read about my journey with Naya. Being her mother was an incredible gift, honor and responsibility, and the most loving time of my life.

I'm going to begin ahead of schedule with a story about someone I have the pleasure to work with at TE. She's a young woman, with an amazing story that all mothers, daughters and parents should hear.

Meet Lexi...

[youtube=http://youtu.be/P5EZRp09b_g]

The Naya Foundation Site Launched!

On April 2nd, we launched The Naya Foundation with many friends, family members and passionate supporters of our family and Naya. We are excited to announce that we have also launched the official website for Naya's Foundation!! Please check out the site at http://www.thenayafoundation.org

There are a few things we are working through which you'll notice on the site.

First, this blog will eventually be redirected to the Foundation site. We will also begin blogging in both sites so that Naya's supporters can get used to the new site.

Also, we're finalizing the IRS non-profit designation so the donations will continue to go to CHOP, with all funds raised going towards pediatric cancer research and cures.

And, finally, we are looking for committee leaders and volunteers.  Let us know if you have interest, but didn't get the notes from the April 2nd meeting.  You can email us at nayasummy@me.com

Join Us for The Naya Foundation Kick Off on April 2nd

On April 2nd, we are officially kicking off The Naya Foundation. If you are in the Philadelphia area and wish to join us (by phone or in person), you can send an email to nayasummy@me.com or comment via this blog and I will forward details to you. A dial-in and online meeting will be available for out-of-towners to participate. Over 800 people supported Naya in the last 2 years, and we want each and every one of you to join us as we help kids with cancer live the lives they were meant to live.

If you can't make the date but wish to stay informed, keep following the blog, and soon, the Foundation's website.

Seeking My Narrative

I'm going through a journey of finding out who I really am, and what I'm meant to do in my lifetime. I know many of you are too, so I thought I'd share some of my learnings so far during my journey. For decades, I've wondered what I was meant to do. When Naya became ill, I knew that I was chosen and meant to carry Naya through her life, and be strong and loving for her. My upbringing shaped and prepared me to carry her. I also know that I'm here to see that Zak thrives, survives the loss of his sister and becomes the man he was meant to be.

I believe that all of my life experiences are supposed to lead to something that helps others in a bigger way. I'm not sure what that something is yet, but I hope I see it early enough to do something about it. This month, I had the chance to meet and learn from so several inspiring individuals. Their points are helping me develop my eventual narrative, and I wanted to share them with you in case you get inspired:

-Dream big, really big -Always have a dream you are shooting for -One person can make a difference in the world. I can make a difference. You can make a difference. -A sports legend said to me after coming in second that "#2 is the first loser". True in sports, but it could be true in many places. Figure out when #1 matters, and make it happen. It's part of the dream big. -Your entire life is part of your narrative. In my case, my upbringing prepared me for the unimaginable loss of my lovely Naya, and also prepared me for being an advocate for children. In Monica Lewinsky's case, she's helping us understand the price of shame. What's your narrative? -Be compassionate -Have empathy -Have a daily dose or two of inspiration. Surround your day with inspiring people. It's a cycle...they inspire you, you inspire someone else, and it keeps going. I follow people who inspire me online, and they do the same. -Help all kids aspire to be greater. Give them opportunities to be inspired. -Every person has something to offer. Seek it out. I've learned so much from people just by tuning in, opening my mind and seeking their message. -Shedding stereotypes creates bigger possibilities for everyone.

My narrative, and yours, is the sum of all parts. Think about your life and journey. It's telling you something, and your story is in there somewhere.

Beautiful Truth from RBG for Hank, Zak, All Women and My Friends

Slow Down

A special person I work with always says "slow down to speed up". His words are true in work, and in life.

Life passes by too fast. Multitasking, electronics, media, double-booked meetings, tasks and activities all make it fly by. I'm choosing to be fully present. It simply makes my life richer and better. And, being present actually speed some things up.

A recent vacation forced me to step back and face my changed life head on. Being in Vail wasn't easy without Naya,but I needed to do it, and I didn't know why. I think it's becoming more clear.

I made space for myself to grieve, and realized I've only just started to feel the immenseness of my loss. I continue to imagine myself with Naya, holding her in my arms, laughing with her, and loving her as only a mother can. I want her to feel my love from wherever she is, and I want to feel her love through my grief.

I've made more space for my husband, and am helping him as he gets back to being the bigger than life person he has always been. I SEE Zak as a young man with great humor, world opinions, quirks, empathy, maturity and deep intelligence. I've made time for great friends, and had meaningful conversations with colleagues and new acquaintances. I'm fully engaged at work, and bringing my whole self to the game.

I've found more and more that people are giving, selfless and caring. From a lending a shoulder to cry on and ear to listen, to donating, honoring Naya through bake sales, helping us get her foundation off the ground and more. And, there are people who suck your time, stress you out and aren't in the first camp. My trick is to make sure the time suckers don't cause me to lose perspective or be negative. It takes practice and reflection every day, but it can be done. And, you will be happier.

Dear Naya,

We hope you're happy and smiling down on us. I imagine you with Grandma Taru, Grandma Betty, and Grandpa Bhupen all the time. I know they are taking good care of you. I hope you're enjoying Rekha. I feel you at times watching over me and smiling. Thank you babe.

This has been a busy month. I didn't have much time to just be with you. No matter how busy, I was determined to keep your cause moving forward. But I'm sure you knew that. I was at AIS this week. I love that school, but I shouldn't be the one going there, it should be you. A lot is happening there in your honor. They are going to create an award for the 6th grade which represents what you stood for, which was so much. They are also creating a space on the playground dedicated to you and PJ. Also, two Agnes Irwin girls pledged over $5,000 that they raised for your cause through their Hives for Lives club. Dad and I are creating a scholarship in your name to help a young AIS woman in her junior and senior year stay at AIS through graduation. Your classmates are also going to help us with the Parkway Run. None of this brings you back to us, but it all ensures your dream to cure pediatric cancer will be carried out and you will always impact the lives of girls at AIS.

We met Dr. Fisher and talked to CHOP too. In the last year, you raised over $200,000. Just this past week, we gave $50,000 of that money to genetically sequence medulloblastoma tumors of other children. Your tumor was sequenced, but it turns out that there's no ongoing funding to do that, so your money is going to help those kids get closer to a cure.

This month, TheNayaFoundation will be officially launched. I have many ideas that were yours, and everyone wants to help. We won't stop until there is a cure for your disease. I promise you that.

Yesterday, we took Zak and his friends downtown to the Villanova game. You would have been so annoyed with 4 teenage boys. Dad and I laughed thinking about what you would be saying about them, and how you'd be rolling your eyes. I passed the Kimmel Center and thought about the time you read your poem on stage for Dream Flags. You weren't nervous at all. I was so proud of you. And, I passed Citizens Bank Park and remembered when you walked with me for the American Heart Association and TE team. You did so much in your lifetime Naya, all the way until you had to leave our earth. More than most people will ever do.

Our heart breaks for you constantly. I imagine holding you and giving you kisses every day, and we hear you laughing and see your smile all the time. Valentine's day is coming up, and Zak's birthday. We're going to Vail. It's going to be a killer being there without you. Help me be strong Naya. Love you. Mom