A Sign and My Thoughts

September 16, 2013

The day after Julia passed away, John and I had to go to the funeral home to finalize arrangements for Julia’s memorial service. As you can imagine, this was at my lowest point. I did not think I could make it through the day. I procrastinated, doing other chores around the house rather than get dressed for the meeting. I finally rushed up the steps having only ten minutes to dress.

Running into our room, I threw open the closet door and there it was; out from the multitude of hangers to my right flew a scarf. Grabbed by the wind of my haste, it billowed out from its long ago stored home between the belts and jackets as if waving at me. There is was; a zebra print silk scarf with a hot pink border. There it was; a scarf from years gone by, 1980’s vintage stored away waiting for its time to come back in-style. I called John right away to see if he had the same reaction. He confirmed that he had not seen this scarf there before, had not noticed it boldly standing out from all the other clothes. There it was; a coincidence or a sign. There it was; Julia saying hello, that she was okay. And there it was; a calmness and strength that I needed to get through this without her physically by my side.

September 14, 2013

For almost 4 years, I have chronicled Julia’s life. At first, it was just giving friends and family a clinical update of what was going on with her cancer treatment, but later the writing morphed into the story of Julia – her words, her wisdom. So I think it only appropriate that I stand up here today and once again attempt to be her voice.

I struggled this week to write, to find all the correct words, to make sure that I could tell all the right stories……. It has not been easy, not without my muse. There are so many things to share, so much to remember.

Julia’s first steps and later her races upstairs to bed; Her infectious laugh and her smile that could light up the world; Julia’s boundless love for her brothers, James and John; Sleep overs with her cousin/sisters, her “cisters”, Laura and Nicole; Her Spa Scouts; Play dates with friends, young and old Wrestling with John and James or just hanging out playing video games with them; Family vacations, our Disney trips, her Make a Wish trip; Her love of the ocean and swimming; Her joy with finally having a sister in Amanda; Watching Star Wars with Daddy; Her face as a toddler when we walked in the DC Pride Parade; Julia waving to the crowd thinking the parade was all for her; Julia’s sense of fashion and design – from her outfits to decorating clinic walls; Listening to her playing with her Barbie’s and dolls, creating stories and singing the narrative; Watching our Star Girl play with her trusty sidekick, Satellite Dog; Our bedtime talks, when Julia taught me about life.

I don’t know where to begin; how to speak of Julia’s optimism, her tenderness, her courage, her strength, her love.

As a parent, you always know your child is special, but in this last week, we have truly realized how very extraordinary Julia was. We have heard it over and over again. “Julia was different”,”Julia had the ability to light up a room”, “Julia was an old soul in a young body”. We have heard stories this week about the times Julia wasn’t with us; about her kindness, about her strength of spirit, about her ability to make other people feel loved, about how she made a difference in the lives of so many people.

It has been overwhelming.

From the moment I found out I was pregnant with Julia, I said Julia “was a gift”. Now more than ever, I realize how true this statement is. Hopefully, I will find the right words to speak of Julia, of her spirit, of her gift to all of us.

Julia had kindheartedness and expressed empathy well beyond her years. A mother of one of Julia’s friends told me this week about the first time she met Julia – it was a Maderach Park and all the children were busy playing. She walked up with her daughter, who was nervous about fitting in and making new friends. Julia ran over the minute she saw them and with the biggest smile, grabbed her friend’s hand saying how glad she was to see her. Julia then led her off to meet and play with the other children. No doubts, no pretenses, and only pure appreciation for that moment. Julia always wanted to have everyone feel appreciated.

I witnessed firsthand Julia’s kindness, her innate ability to connect with others. When one of my oldest friend’s father passed away, we went to sit Shiva at their home. Julia took a quick liking to my friend’s mother, sitting by her side throughout the night; almost watching over her. As they sat together talking, Julia asked about someone across the room. My friend’s mother proceeded to tell Julia that she had a secret – her eyes were bad and she couldn’t see that far (the effects of macular degeneration). Julia leaned in a little closer and said “That’s okay. I have a secret too. I have cancer.” They continued to sit there holding hands, hugging on occasion, Julia finding a way to cross the generations, to comfort someone else with innocence and understanding that was just that, it was Julia.

Nothing demonstrates Julia’s compassion more than her generosity and desire to help others, not thinking of herself, her battle with cancer. It all started with Julia’s own Relay for Life team – because she wanted to “sleep out under the stars and help other people with cancer”. Then there was a puppet show at clinic – putting up signs – “Tickets – 1 Cent for CHOP and the children”. I can still hear her announcement at the beginning of the show “Thank you for coming to my puppet show. No Flash Photography. Save the applause until the end.” (I think Julia saw too many Disney shows).

When Julia first relapsed, she wanted to have a big birthday party. Of course, we couldn’t refuse and we planned a “pirates and princess” party. Julia announced that she didn’t want any gifts, but rather she wanted everything to go to help other children with cancer. With that announcement, the guest list grew. Julia’s passion was contagious. We had to help her make an impact.

And last year, when Brooke Elementary announced that they wanted to have a fundraiser for Julia, she made it clear from the beginning that everything raised was to help other children. The school collected over $6000 for CHOP and the fight against childhood cancer.

Using one word to describe Julia, James said it best – she was “illuminating”. She genuinely was our “Star Girl”. Julia’s enthusiasm and outlook were contagious. Julia was the ultimate “people person”. She was never afraid of meeting new people and generously would give them a hug. From another cancer warrior in the radiation waiting area to a 6ft 9 inch basketball player, Julia had the uncanny ability to touch people even if she only met them for a fleeting moment.

As a friend wrote this week, “a smile from a blue-eyed angel truly can change one’s heart”. Julia did change people. She changed me and I am a better person because of her.

As many of you know, Julia loved music.

From when she was a little girl, she would sing or hum or whistle. She loved to sing and dreamed of one day being a singer and then a doctor. Julia would happily sing for everyone – from Ronald McDonald Camp to entertaining the nurses at Clinic to her friends at school that weren’t happy.

Julia used singing as a way to express herself. Whether in her early years singing “You are My Sunshine” or “Family” or the Beatle’s “All You Need is Love”, or later singing “Fireworks” – she always found just the right song.

And Julia listened to the lyrics, they were just not words, they meant something to her as they should to us.

The song “Just Keep Swimming” from Finding Nemo, the Musical carried her through one month of radiation and the “Enchantment Song” from Tangled through the loss of her hair for a second time from the effects of chemotherapy.

Many of you may not know that Julia sang last year at the American Cancer Society “Party with a Purpose” when they honored the CEO of CHOP. They asked if Julia could sing “Tomorrow” from the musical, Annie. Julia was not familiar with this song, but with determination, she listened to the CD and practiced. And she practiced.

The evening of the event, Julia climbed onto the stage and stood in front of a packed ballroom, singing a cappella. “Tomorrow” became a bit of an anthem for Julia, singing it most recently at the Ronald McDonald Camp talent show not even one month ago. That song embodied Julia’s optimism and courage.

This past February, John and I took Julia to New York for her Christmas present. Annie was back on Broadway and there could not be a more appropriate gift than to take her to New York to see a matinee. We decided to make a weekend of it, so we extended our plans to include breakfast at the American Girl Doll store and tickets for an evening performance of another show, WICKED.

The rest is history. Julia became obsessed with WICKED– the costumes, the story, the songs. WICKED became her show, seeing it 4 times in only 4 short months.

I have the song in my heart that will most remind me of Julia, of her spirit.

I can see her at clinic standing there in front of all the nurses singing , the cd playing in the background and Julia giving commentary “here’s the part that makes you feel like flying” right before belting out the words. Julia sang “Defying Gravity” with passion and fierceness, an understanding of this song that even adults can’t realize. I can hear Julia’s voice, words ringing out –

So if you care to find me Look to the western sky! As someone told me lately: “Ev’ryone deserves the chance to fly!” And if I’m flying solo At least I’m flying free To those who’d ground me Take a message back from me Tell them how I am Defying gravity I’m flying high Defying gravity And soon I’ll match them in renown And nobody in all of Oz No Wizard that there is or was Is ever gonna bring me down!

So, every evening, I will look to the Western sky and I will see My Star Girl. She will continue to be my guide through my darkest nights and days.

And I will remember to put into practice some of the things Julia taught me, she taught all of us –

To hug a perfect stranger

When someone asks you how things are and they are good, then say they are “great” and when things are not going so well, say they are “good”

Appreciate everything and everyone – even if they are not like you or they enjoy different games – invite them into your world and more importantly allow yourself to be part of theirs

Remember the present is a gift. Don’t spend your time worrying about the future or you’ll miss everything right now

Take time to make someone else feel special and important

Don’t be cynical – believe that everything is possible

To sing out loud – don’t be afraid

And to eat waffles and ice cream, even for breakfast

I love you Julia…you will always be in my heart.

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468