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 alsoTEAM_NAYA_PLAIN 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.

Slow Down

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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.

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Dear Naya,

Naya Zak Avanti Express

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Naya Back to SchoolWe 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.

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