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.”

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Spanish Bay Mom Naya Zak

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.OLYMPUS DIGITAL CAMERA

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New Year’s Resolutions

IMG_1629I 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.

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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.

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Living in Full Color

zak and momLife 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 us302-Naya-Summy-Celebration-of-Life-Philip-Gabriel-Photography with a big smile.

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Celebrating Naya

Naya Galyn Summy was born 5/27/03 and left our world 11/5/2014 at the age of 11. She loved her family, dogs, horse and friends. She was a proud student and 6th grader at The Agnes Irwin School. Naya left this world very peacefully surrounded by her brother Zak, Dad, Mom and her dogs. She was widely loved and inspired many with her strength, smile, kindness and courage.
Naya’s legacy will be felt as we carry out her wishes to cure pediatric cancer. In lieu of flowers or gifts, we are encouraging donations to The Children’s Hospital of Philadelphia using this link http://chop.donordrive.com/team/teamnaya.  All funds raised will be directed towards pediatric brain cancer research in Naya’s honor.

We hope you’ll join us as we celebrate Naya.  If you wish to come, the details are below:

  • Guests: Friends, family, followers, and people inspired by Naya
  • Date: Sunday November 16, 2014
  • Time: 1p.m – 4 p.m.
  • Place: Radnor Hunt, 826 Providence Rd, Malvern, PA 19355
  • Dress: Casual. Western, equestrian, pink or purple clothing encouraged
  • What to Bring: Great stories and memories of Naya to share
    Beautiful Naya low res
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