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

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.

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

Still Learning From My Daughter

Yesterday marked three months since Naya passed and I'm still learning how to process my emotions. I want to focus on the way she took everyday as it unfolded and made the most of every moment even though many of those movements she felt like crap. She would make plans to ride PJ, or which classes she was going to attend, or make plans to craft with friends and not for a moment think, "maybe I won't feel strong enough to do that so maybe I shouldn't plan." It's still raw and even though I want to focus on the strength she showed me how to pull from I still have those moments where it's hard not to get angry, mad as hell in fact, and frustrated with the odds that she was dealt. My own weakness try's to get the better of me. Then I think about how she never let those feelings in, instead, pushed and fought and worked hard to enjoy life. So how can I do anything but that?

She will always continue to amaze me! So now Sam, the puppy she convinced us to add to our household, is getting big, livin large, and taking over the role of leader of the pack. Take a look. Already housebroken and smart as a whip at 4 months old I'm sure she would approve. Just like Sam, I'll keep learning. I just hope I'm as good of a teacher to him as Naya was, is, to me.

Staying Centered | Naya's Foundation | Precision Medicine Initiative

January was a crazy month. I love work and what I do, as well as the people I get to work with everyday. Add strategic and time sensitive projects, and the workaholic side of me emerges and I get easily consumed. Only this time, working alone wasn't enough to fulfill me. I greatly missed that space I've created over the past several months to be with my family and Naya's memory. I didn't have the mental capacity to be in the moment with the people and thoughts that matter most to me. I veered off course...just for a little while. With the help of my brother, caring friends, Hank and Zak, I quickly figured out why I was feeling off center. I was missing that space, and petty things bother me. That space keeps me grounded and focused on the bigger picture.

I've profoundly changed over the past two+ years, and being grounded in who I am and on what matters most to me is my quest. Draining my energy worrying about what others do, petty drama, or things I can't change is exhausting. I need that energy for what I want to do for me, my family, people I care about, and most of all, Naya. This blog is part of that quest.

This week will be 3 months since Naya passed. I miss her more every day. I believe she's with me every minute of the day. I'm proud to say that I am more grounded in what she stood for and am making progress.

There's progress on our goal to cure pediatric cancer. Naya's foundation paperwork is getting filed so we can get it up and going very soon. We also received over $25,000 in donations in January from amazing people and organizations. These funds will go be directed towards Medulloblastoma (Naya's disease) sequencing at CHOP. Genetic sequencing enables future targeted therapies and advances in pediatric cancer treatments.

This week, President Obama made it a priority to fund the Precision Medicine Initiative, calling for new funding to build a national infrastructure that will allow researchers to custom-design more effective therapies based on a patient’s individual genetic profile.

Read about it. It might change your life.

http://www.technologyreview.com/news/534591/us-to-develop-dna-study-of-one-million-people/

"Precision medicine refers to treatments tailored to a person’s genetic profile, an idea already transforming how doctors fight cancer and some rare diseases."

Strong Roots

Someone who I respect and admire asked me about my family and parents as a way to understand more about how I'm getting through losing Naya. It was a surprising question, but one that made me start connecting many dots about my life. Life isn't so random after all. The quick facts about my upbringing. I'm 100% Indian, born here in the U.S., raised in Ohio. When I grew up it wasn't cool to be Indian. Nothing like today, where being different is now cool and embraced. I was different, and so were my parents. They were privileged in India, but came here to start a new life. They worked hard. My dad earned his PH.D. while working as a janitor, professor's assistant and other odd jobs at Michigan State. Mom babysat to make ends meet and learned English through osmosis. They ended up divorcing when I was a teenager which, at the time, was socially unacceptable in Indian culture. They struggled to find happiness for a while, but ended up happy and at peace with two children + four grandchildren to love. Their desire to be happy, love for family, honesty, generosity, and fortitude guided them throughout their lives and paid off.

They taught me a lot. Work hard, be honest, be kind, love people, live life to its fullest and look forward. For many years, it was my dad who raised me with those values. As I got older, I realized my mom had the same values, and in some ways they were stronger in her than my dad. I married Hank, another very determined, talented person with a positive outlook on life and many of the same values I grew up with. Both of our parents persevered through many life challenges. While not the same as losing a daughter, they had their own difficult hurdles to overcome.

When I reflect on my family and Hank's, they always moved forward in spite of obstacles. They lived life as full as they could. My dad used to say "life goes on" when something that he didn't like happened. Simple words, but true. The key for me is how to be now that life has gone on without Naya present. As I type, I realize life is going on with Naya. She's always present with me and always will be next to me.

.

New Year's Resolutions

I have come to deeply appreciate how difficult it must have been for Naya to keep smiling and live positively through a very tough fight for her future. In spite of knowing there was a chance she may never fulfill her dreams and her daily physical challenges, she gave us all huge smiles, laughter and constant positive energy. She truly started the day with an attitude to "give it her all" and "enjoy life". She had a purpose and left a legacy because of her attitude. Keeping a truly positive attitude in the face of physical pain and disability, deep loss or daily challenges is REALLY HARD. Let's be honest; it's hard even without challenges. We all fall into habits of complaining even if our lives are pretty good.

Naya's drive pushes me to keep working through my own emotions every day. I remind myself multiple times a day to enjoy everything and take life in. It's not easy, but I think the more I make it a habit, the more it will just happen naturally.

The holiday was challenging, but also full of many joyous times. Our puppy Sam has brought many laughs. I believe Sam was Naya's Christmas gift to us, to help us get through our pain. A second tree now known as "Naya's tree" and a Christmas Eve gathering at my brother's house are new traditions. We deeply missed Naya and my mom, but honored both of them by sharing many laughs and tears together.

We went to California...our first vacation without Naya and my first birthday without her. I took many deep breaths and told myself to go with the flow. I believed special memories and funny stories would come out of the trip. And they did. Watching Zak and Hank laugh, hanging out with happy friends, meeting new ones, witnessing one of my closest friends get married, and spending time with Hank's family were all precious. Moments in life created by a positive attitude and inner strength to push myself.

I'm learning to check my attitude on the most mundane things. I went to the Container Store recently. I thought of that store as an errand. Naya thought of it as an adventure. She couldn't believe there was an entire store dedicated to organizing things. We stayed there for a while because of her excitement.

Daily meals, watching TV, going on errands, shuttling Zak around...these are all opportunities I cherish and have come to appreciate and really enjoy.

Don't get me wrong, we cry and hurt for Naya constantly. That'll never change and I don't want it too. We are forever changed and how we change is what is most important now.

That brings me to resolutions that I've already started. Actively seek the silver lining in everything. Be kind. Be compassionate. Laugh. Give back. Ask and work hard for what I want. Stay healthy. Be positive.

We are establishing The Naya Foundation. It turns out setting up a non-profit takes a little time. In the meantime, if you want to give to Naya's mission, use this NEW link. The old one will go dormant soon.

http://chop.donordrive.com/campaign/TeamNaya

A Sunday reflection

$210,000...that's what we've all donated so far to help cure pediatric brain cancer. I'd like to think that money is already saving children. I hope that thought makes you feel good this holiday season. It helps me. My gut says we'll get there soon, and the cure isn't far off. It's been a long time since I've had time to do much. A couple of weeks off is very welcome. With it comes more time to contemplate our life, Naya and the last two years. Naya's absence becomes more noticed and real every day. I don't really think she's gone, just not her with me. Our lives will always be influenced, directed and energized by her. It's just not clear yet how things will turn out, but it's undeniable that she will continue to shape us and watch us.

The tree is up, and stockings are up too. I put Naya's stocking up and see it every day on the mantle. It's of course pink with horses, which makes me smile. Friends and I also put up all of her favorite ornaments with care, tears and smiles.

I miss her. She would be cheering on the Steelers today with me and looking forward to wrapping presents. There was so much about Christmas she loved, and I loved experiencing with her. One of my favorite and stupid things to do with Naya every holiday is go to Hallmark and buy there fluffy santa/snowman toy with music (see picture). They play music and shake. I am ashamed to admit that I'm one of those people who buys them, and I have a "collection". Today, I saw a funny Snoopy one, and wanted to get it. Zak was so embarrassed and wouldn't let me. Naya would have. Tomorrow, I'm going by myself and getting it. I have to for her (and me).

Today, I tortured Zak and took him shopping for Hank's gifts. I found a great store in our town with the best ornaments and Christmas decor. Truly the best I've ever encountered. I bought a few things while Zak was irritated and waiting in the car. If Naya were here, we would have been in that store all day! I bought a couple of things she would have liked including more ornaments for our already over-decorated tree. I might get a second small tree just to put her things on it.

The puppy, Sam, is quite a handful. He's smart, spunky and loves to play. He's pretty independent too. In the first week, he did a few things that Naya would have laughed at. He pulled her favorite blanket off the blanket rack and the entire rack came crashing down on him. He took a piece of clay sushi off of a sushi art project she made, and he found one of the rocks from her rock collection in the yard and brought it in for us. You could say it's all coincidence, but I like to think it's Naya letting us know she's around & enjoying Sam too.

Another thank you by Smilebox

Ahhhh the Holidays and Naya's gifts

The holidays are such a special time. For us, old traditions have to be changed unwillingly, and new ones are forming. Naya was very involved with choosing and decorating our tree. This year, she isn't here for either. So, I invited a friend to help me with the tree. Changing traditions isn't easy, but it's better than the alternative of yearning for something that can never be. Driving through towns, seeing the lights in NYC and going to malls in the Philly area, I notice so much more about Christmas. It truly is a holiday for children. That may be obvious to you, but for someone who wasn't raised in a traditional American home, it wasn't to me. The Thanksgiving parade, songs, trees, ornaments, lights, traditions and beautiful decorations are magical. No wonder kids love Christmas! I think parents love it because it's so magical to experience Christmas through their children. I miss the Santa wish list, the stories about each ornament going on the tree, Elf on the Shelf (although Zak will play along this year and humor me) and so much more. We will find new things and traditions that include Naya even without her physical presence.

Naya left us a couple of gifts this Christmas...

Her 6th grade classmates at Agnes Irwin had the idea to do a service project in Naya's honor. The girls collected 325 new books to donate to CHOP's Oncology floor. Thank you AIS. Naya would have been so proud of her beloved school and friends!

In the summer, Naya begged for a new puppy, and with Zak's added pressure, we decided to get one. She knew he was on his way and would be here in December. She named him Sam, and saw a picture of him soon after he was born. I'll never forget her smile when she saw that picture. We picked him up last night. I can hear her laughing as he runs around discovering the house, chews toes and plays with Gabby & Duke.

On other fronts, we're working on several things to honor her memory and mission including establishing her foundation that will focus on her life's missions:  curing pediatric cancer, marine biology and supporting AIS. My hope is to launch in January, and start to gather your help as we carry on her mission.

Enjoy your holiday & spread the magic of the season. Laugh, smile & love.

Living in Full Color

Life without Naya. I had hoped I never had to face that reality. But here it is. What's it like? Quiet, empty, sad, and painful at times. As if there's too much space in the air and it needs her laughter, wit, opinion, and presence. It's not always that way. Pictures and daily experiences remind us of her happy life, laughter, strength, kindness, courage and loving nature. Our home and community are filled with her presence and surround us with her style, personality, grace and smile. And, there are the life-long gifts she left with us to carry forward.

The most generous gift of all is how she has helped me open my heart to others. I feel like a Kay Jewelers ad, but it's true. I have met so many people who are so compassionate and have opened up their hearts, love and friendship to our family and me. Our story and mine have touched many at her school and in our community, and I look forward to continuing her legacy and her story with many of you. I am establishing new friendships and growing old ones all thanks to Naya. I care about their lives as much as they care about ours, and would be at their side any time.

I'm also finally understanding that caring for myself is just as important as caring for others. How many of us, especially women, have heard that before. But taking care of ourselves allows us to live life in full color. Naya showed me daily that she wanted to live in full, regardless of the obstacles in her path. We're given one life on this earth. What's the point of not living large, experiencing everything, and taking some risks? What's the point of not being your best in all you do? What's the point of not experiencing joy, laughter and love? But, you can only do those things if you truly take care of yourself.

Finally, life is not full without being grateful, thanking people and giving back. Roughly 500 people gave up their Sunday afternoon to celebrate Naya. At least 800 people gave over $200,000 to her cause. When we began this journey, we had no idea it would touch so many people and change their lives too. Many of you were grateful to us for sharing our journey, life and Naya with you. Well...Thank you!!! You have helped us get through the most difficult time of our lives. You cried with us, celebrated with us, loved us, and now are supporting her dream of curing cancer. What more can we ask....Stay with us and follow our journey, follow the blog. As she said on November 5th...I've only just begun.

Her celebration was incredibly special. Here are some beautiful pictures, and one from last Thanksgiving. The service was held at her barn with PaintJack present. Her celebration was all Naya. Perfect colors (purple and pink), her favorite foods (sushi, chocolate ice cream and brie), and most importantly, a room full of hundreds of people sharing their love of Naya in full color. She was watching all of us with a big smile.