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
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In Naya’s Words

Naya is home, surrounded by what matters to her … Love. Family. Dogs. Home. Friends. We are blessed to have this precious time together and be with our beautiful girl. Whispering in her ear to tell her how much we love her. Reading notes from all of the people that are sending her their love. Telling her stories that remind her of funny moments and her amazing courage. Caring for her with the same love and gentleness we did when she was a newborn. Kissing her beautiful skin. Holding her hand. Caressing her legs to give her comfort. There is nothing we won’t do for our amazing daughter.

She has given this world so much in such a short amount of time. We all witnessed her incredible positive energy and spirit as she climbed many mountains to see her life dreams fulfilled. We continue to be inspired by her strength, courage, humor, love and beauty even when she is so weak. She has never given up, and never will. But now, we are inspired by what she is going to do.

Naya knew she might not make it through this battle. While she never dwelled in that possibility or felt sorry for herself, she did make her wishes known. She wants to change the world by giving kids their lives back. Her desire is to cure pediatric cancer. When her health was good, even then she wanted all of her leftover college money to go to CHOP and wanted to support their research for the rest of her life. She is inspired by Alex Scott of Alex’s Lemonade Stand, and wishes to make a similar difference for children.

Along this journey, you have seen her words on posters and videos. Smile. Never Quit. Follow Your Dreams. Enjoy Life.Stay Strong. Fight Like a Girl. Enjoy Each Day. I came across a gift she gave Hank for his 50th birthday, before she was diagnosed. In her typical way, she chose something very special that will live with us forever. She chose a small wooden box with a quote:

“It’s not the years in life that count, it’s the life in the years.” – Abraham Lincoln

Thank you Naya for being our daughter. There is no greater honor.

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Being!

Everything she does teaches me how to be more than I am!  Even when the odds are against her, she knows the house has the advantage, there appears little to gain, Naya shows me the way.  Fighting Medulloblastoma has been a test of courage, strength, resilience, persistence, focus, and most of all determination.  She has been an icon to me and Amy, showing us at every hurdle how to be!

Over the course of the last twenty one months, the time she has been in treatment, she takes every challenge head on and with grace and eloquence; 2 brain surgeries, 6 weeks of  daily radiation – general anesthesia – and chemo, Six – five week cycles of chemo therapy that every single time put her in the hospital fighting infection for weeks, and 2 – post standard protocol – chemo regiments to fight the effects of her relapsed disease.  Always, thinking of others, mostly Amy, Zak, and me, even though much of the time she battles nausea, aches and pains, and generally low energy, she keeps fighting forward. No matter how difficult the situation is at hand, Naya’s positive drive, focus and attitude inspire everyone around her. To Naya, there is no other way to be.

We are blessed to love her, parent her, teach her, help her through it all, and most of all learn how to be!

Now she faces another challenge.  The most difficult of all.  One that, at 11 years old, I struggle to understand how she possesses the insight to navigate but yet she does.  She is teaching Amy and me how to honor and respect who she is and all that she has achieved even if she may not be able to reinforce the lesson.

The disease is fighting hard to win the battle. Though this insidious villain may prove more than our beautiful, daughter can defeat, she is still showing us how to simply be!  Be strong, be kind, be understanding, be in the moment, be better than we think, be loving, be courageous, be human.  She is beautiful, so beautiful.  Keep being Naya, keep being!

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A Challenging Month Overcome

What a month we experienced in September.  Naya’s sodium issues which began in August seemed to be managed, but things became unmanageable in September. We found ourselves having 2 good days, 1 bad day at the beginning of the month, and constantly getting sodium boosts at the hospital. By mid-September, she ended up in the PICU due to very low sodium, which quickly rectified itself only to reoccur the following week. Finally, she was admitted so we could figure out what was happening, and that led to a 6-day stay in the hospital, with Naya returning the same day of her Parkway Run…although she missed the Run/Walk so that she could get home.

The effects of the sodium roller coaster were scary, causing extreme fatigue for 3 days straight. Thankfully, Naya bounced out of it once we got her sodium stabilized, just in time to see some of our wonderful friends who came in to support her for the Run/Walk. She’s been hanging out at home recovering and bouncing back. We hope to ride PJ today, which would be her first ride in quite a while. And, we expect to restart treatments next week now that she’s stronger.

For now, we’re not pressuring Naya to keep up with school, but she does miss her friends. The AIS girls came out in force at the Run, and recently, they’ve been writing cards to her. The cards are so helpful when Naya’s feeling left out. She reads them and tells stories about each one. Thank you, thank you, thank you to all of her friends and supporters at AIS. She reads every card, text and blog post you send. Hopefully, she’ll be at school soon for a visit/lunch!

All along this journey, I have learned and tried to take things a day at a time. This month, it felt like we were taking things an hour at a time. Being on the other side of the issues for now is a blessing. My advice to any parent is don’t put off spending time with your kids. You never know what’s around the corner. The pictures below show the roller coaster. The picture with the Philly Eagle was on Tuesday in the hospital, the picture with Hank was 1-2 days later, and of course that gorgeous smile and girl  coming back was just yesterday.

My next post will be about the Run/Walk. I’m still collecting photos so if you have one, send it to my personal email at ashah1@me.com. Thanks to everyone for their support. You made a difference for children.

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