The Answer

March 10, 2015

This week marked 18 months since Julia left us.  As you can expect, it was emotional but we were also able to find ways to continue to celebrate Julia’s life and legacy.

It started with the arrival of a package, one we had been expecting over the last few months.  Wednesday, the second Patient Puppet, ordered by Julia’s Grace Foundation arrived.  This time it is a boy!  He doesn’t have a name yet.  That will be determined by the patients when we deliver him to the CHOP King of Prussia oncology clinic.

We also had several meetings with CHOP to discuss the Foundation’s support of a new program being developed at the hospital, along with another idea we have been working on that will help bring some happiness to the children.

We know that none of this will replace Julia in our hearts, but knowing that her hope and spirit will live on makes these milestones a bit easier.

I was asked to speak this weekend at the Harvey Cedars Lutheran Youth retreat, a gathering of 300 teenagers from the Delaware Valley.  This year’s theme was Super Heros.  The first speaker was a fireman who spoke about courage.  The second speaker, the mayor of Harvey Cedars, discussed conviction and leading through Hurricane Sandy.  I was asked to speak about Julia and why she was a Super Hero.

I found it challenging to find the right things to share.  I can easily write about Julia and all the things that she did in her short life, but this was different.  This was about Julia being “beyond special”.  This was about urging teens to leave their comfort zone, to abandon their potential indifference, to push beyond their boundaries to do something.  Would they hear Julia’s story and be touched, perhaps moved enough to make a difference in someone else’s life?

Here are the thoughts that I shared with this group.

“It is a bit overwhelming that I should be asked to stand in front of you and speak about my daughter, Julia.  It is even more overwhelming that I was asked to speak to you about her being a superhero.

I am sure you have all heard that every parent thinks their child is special, but I can honestly stand before you and say that my daughter was my hero. 

Julia had an alter ego who we referred to as Star girl.   One day, when Julia was playing with her new puppy, Sophie, she began to pretend she was “fighting evil”.  She said she was “Star Girl” and Sophie was her trusty sidekick, Satellite Dog.   “Star girl”, she told me, traveled through space fighting cancer and helping others. 

Julia’s hero days started long before this picture was taken.  But what makes her a super hero?

You are hearing a lot this weekend about some of the qualities of a super hero.  You have heard about courage. 

Yes, Julia was courageous.  Unlike her mother, she would easily stand in front of a crowd like this and speak or sing.  She bravely faced cancer for three years.  She never backed down and boldly smiled through every step of the way.  When she was poked and prodded, she would sing about “tomorrow”.  Cancer would not see her cower away in fear.

You have also heard about confidence and conviction.  Julia had that too. 

When Julia was getting ready to have her first communion, her class made banners to display around the church.  I remember the day so clearly, everyone one was with their children helping them make the banners.  There were pieces of felt and templates you could use to cut out your patterns.  So there I was with Julia, asking her what she wanted and she said, “We need hearts”. 

Now Julia was a bit of a fashion diva, she loved pink and sparkles and all I could think was not now, not with the communion banner.  I looked around, and the other children had cut outs of the chalice and host, words about body of Christ.  And here was Julia – she was insistent on cutting out “pink and red hearts”.  But then it came clearer as her banner came together – she started to pick out the letters for what she wanted to write – G-O-D-I-S…..Julia placed everything on the banner and proudly turned to me and said “ Mom this is perfect, remember ‘God is Love’”.  

It became very clear to me on that day, that I would be Julia’s student.  Julia would be the one to teach me about God’s love.  Julia would teach so many with a conviction and with a wisdom that was well beyond her years.

So we have covered courage and confidence or conviction.  What other quality does a hero possess?

Easy – Caring and compassion – after all, if you didn’t care about others, what kind of a hero are you?

From the minute I found out that I was pregnant with Julia, I said it was a gift, a blessing.  Little did I know how true these words were.  God blessed us with this little girl.  A little girl who had such a big heart and a true understanding of real care, love and compassion.

Julia had just celebrated her fifth birthday when she was diagnosed with Wilm’s tumor, a type of childhood kidney cancer.  From the moment that she saw other children in the hospital, she was driven to make a difference for them.   With empathy well beyond not normally seen at such a young age, Julia began what would be her legacy long before starting 1st grade. 

At the age of 5-1/2, Julia heard about Relay for Life team and she insisted we start a team to help others with cancer.  She would save spare change and bring it to the oncology clinic and while at the clinic Julia would put on puppet shows for the other children as they received chemotherapy.  All to make them smile. 

But that wasn’t enough.  After she relapsed the first time, Julia asked if she could have a birthday party.  It was her 7th birthday and of course we said yes.  “Oh, by the way”, she said, “I don’t want any gifts, tell everyone that they can bring a gift for the kids at the clinic.”  As you can imagine, the guest list grew and we subsequently took three large carloads of gifts, along with some checks, to the oncology clinic.

Then there were fundraisers that people held for Julia – she insisted the money go to other children that were fighting cancer.  There are so many stories of Julia’s caring and generosity, I could go on and on, but I was told I only had a 10 minutes to speak with you.  I also don’t want to be the one to hold you up from your free time.

All these examples of Julia’s generosity, demonstrate that Julia had another quality of a hero – caring and compassion.  Caring and compassion shared when she could have easily expected this to be given to her by others.  After all, she was the one with cancer.

I think I have clearly revealed that Julia had the qualities needed to be hero – we have covered courage, conviction, caring and compassion. 

So where does the “superhero” come in?  It comes with “choices”.

You see, even at the young age of 5, Julia made a choice.  She made a choice to spread God’s love, to make a difference for other people who were suffering just like she was.  And in the darkest of times, Julia made an unselfish choice to help all of us.  She gave us a list of things to do to make us happy, a list to use even when she wasn’t here.

Our “Star Girl” lost her fight with cancer on September, 5, 2013. 

Julia had all those hero qualities we talked about, but Julia made a choice to be a super hero.  Julia made a choice to show the world that God is love.

We all have a choice to make in our lives.  Julia understood this at a very young age. We have a choice to share God’s love and grace – we have a choice to make a difference in this world.

So I need to ask you –   Do you have the courage to make a difference?  Will you have the conviction and wisdom needed to stay the course?  Will you share God’s love and compassion?   Will you make the choice?  Will you become a super hero?” 

I shared these words in hopes that one person would be touched by Julia’s message of love and caring; that someone would hear Julia’s story and decide to make a difference in someone else’s life, to share Julia’s Grace.  But, did they hear?

At the end of my speech, as I walked of the stage, I glanced up at the room.  Little did I know that there was a group in the audience that had previously heard about Julia; standing there, each person in this group held a small circular sign outlined in zebra stripes and pink.  And there, in the center of each sign was a single number from one to ten, a number representing something from Julia’s list.

There it was, there was my answer.

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