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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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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