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.

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.

CHOP Parkway Run - What a Beautiful Day

Wow! What a great day, incredibly well organized and outrageously supported by Team AIS, Haverford, CHOP, Media Little League, Alliquippa Stables, McCANN, TE Connectivity, Family and Friends! Thank you all so very, very much! Here is the first of a bunch of pictures I'll share from the run. This is a lot if Naya's friends and her Neuro-Surgeon, Dr. Jay Storm who saved her life.

20130930-075612.jpgTeam NayaNaya's School SupportNaya Wins Top ContributorNaya and Mom3


Fruit Ninja Primer, Pre Second MRI

I know you have been waiting for this and we are so happy to be able to provide it to you today. Yes, here it is, the Fruit Ninja Primer, at last, explained by none other than our very own Naya Summy prior to going in for her second MRI in as many days. We haven't received the report from yesterday so we are anxiously awaiting the results from both today.

[wpvideo Ozzor2ms]

Shake It For a Cure - Oh Yea, Get Your Zumba On With Donna Fooks

Zumba Party is this Saturday. Come on out and Shake it For a Cure.  Donna is going to throw a crazy party so please help by participating.  She is raising money for Naya's Four Season's River Parkway Run in September - http://giving.chop.edu/site/TR/Events/ParkwayRun?team_id=12770&pg=team&fr_id=1500.

The event will take place Saturday, September 21, 2013 from 2:00-3:30pm (doors open 1:30pm) and will be held at the Brookhaven Community Center gym (next to Fire & Police Depts.) 2 Cambridge Road Brookhaven, PA 19015.

The cost is $20/pp, tickets are available in advance and at the door.  If you want to purchase an advance ticket please leave a comment and I'll email you back with how to get the tickets.

So get ready to shake it and have some fun for a great cause!


The Famous Mister Ed - Well...

Naya starts her third round of treatments, out of 8, today but before she begins she went out to see all of her friends at Aliquippa Stables. So PaintJack, Scout, Camanche, and the rest of the gang. As always, she came back full of energy, giving me all the updates on all her horse friends and the late breaking events around the barn. She loves her horse buds but I'm going broke with all the carrot bribes!



Hit Me With Your Best Shot!

Naya rocked out last Thursday with Pat and Neil, yes Pat Benatar and Neil Giraldo. We had a blast and man can Pat still belt it out and of course Neil can make that guitar scream. We had a great experience backstage and Naya partied hard late into the evening. Check out her leather dress with chain link neckline!



20130430-090509.jpg Last Thursday Naya entered into the next, and hopefully last, phase of her treatment plan.  She has eight, six week chemotherapy treatments ahead of her.  Each six week cycle starts with a hospital admission for 3 - 5 days where she is administered the bulk of the chemotherapy drugs for the entire six week cycle.  After the hospital admission portion she then goes in each week for blood analysis and another dose of chemotherapy, vincrystine specifically.  So the beginning of each cycle is the hardest on her and the remainder of the cycle gets progressively less invasive.

She is doing great so far on her first cycle.  She was in the hospital from Thursday to Saturday last week, right on schedule.  It did rock her pretty hard from a nausea perspective and we had to go back to the clinic on Monday to get fluids and steroids to help turn the corner so she could keep food and fluids down.  This did cause her to go back on the NG tube to relieve the stress of trying to eat and get her required calories when she just doesn't feel like eating.  We are getting back in the groove though.  This morning she work up hungry and wanted to try pancakes.  A great sign.


Working Out at Decarlo's

[wpvideo 5OZHO3SF]We got to Zak's hitting lesson a little early so Naya could take a few cuts and work out. Hey Naya's Oncology team! What do you think about that coordination? 3-3 and if her brother didn't get bored and through the ball to the ceiling she would have kept the streak going.

Thanks to Mike Decarlo for letting us use a cage.

A Day at the Park

Well the fans where great, take a look, but the Baker team, the team that Zak plays on didn't bring their 'A' game to the park today. Zak pitched well but went 0-2. He is still leading the league in home runs though. Even though it was a tough loss, having Naya on the bench softened the sting of defeat and made my day much, much better.


School's Definitely NOT Out

Naya went back to school today for her first visit since February 19th! She was beaming with excitement, didn't have any stress or trepidation. She had a blast and I could just tell she feels completely loved and safe at AIS. It is absolutely the best medicine and exactly what she needed and needs. Thank you AIS! She is excited to go back every day. It brought tears to my eyes to see her having so much fun. Take a look.