We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Saturday, November 09, 2013

Ellie's Legacy

Sadly, this blog has gone neglected for so long. After a while, life kind of kicked in and without Ellie around, my heart has not been in it... and of course there is Facebook. I can’t lie and say that I will keep up with it again, but now is a good time for a post. Just this week, Nightline aired a story about a hoax that directly impacted our family. Ellie’s photos were sent to several celebrities and used to inflict a great deal of emotional pain.  Multiple children's photos were used on at least a dozen different celebrities. The show highlights one of these.

Following are some links that will take you to the story:
Nightline Episode – Catfishing the Stars
Nightline - Reporter's Notebook
Video Clip from Natalie Grant

After the episode aired, TheTruth365 (A Documentary and Social Media Campaign that gives a voice to kids fighting cancer) posted Ellie’s photo with a description of the Hoax. (For those of you who have not done so already, I strongly urge you to check out the amazing documentary by TheTruth365. Browse their website, “like” their Facebook page, and share with anyone and everyone who will listen!)

TheTruth365 Website
TheTruth365 Film
TheTruth365 A National Priority
TheTruth365 on Facebook

After watching Nightline, reading all of the comments on TheTruth365, and after the past year of following the investigation of the hoax, I have been doing a lot of thinking.  I feel that now is the time to share my thoughts.

I have so appreciated all of the heartfelt thoughts and expressions of concern from everyone regarding the hoax that was aired on Nightline. Like a broken visual record, the sight of Ellie’s face on the recent TheTruth365 post, with the word “victim” attached, has been playing across my mind’s eye. It is absolutely true that she was the victim of a sick hoax, but I simply refuse to add victim to the wonderful and vibrant list of things that describe my sweet girl. The fact of the matter is that I choose not to be a victim (of cancer or of hoaxes) or to let that define my daughter. A long time ago I learned to stop being afraid of the bad things that can happen in life and to start living with my heart wide open. I have found that it is impossible to fully love and open myself to others when I am simultaneously trying to protect my heart. Despite having Ellie’s photos used as a weapon, I am not sorry that we put her story out there for everyone to see. In her short life, Ellie has touched more people than most of us ever will if we live to 100. Even now, in the face of this negative event, Ellie’s story continues to move hearts. My greatest desire when this story went public was for positive things to happen. I know that this would be a lot harder to say if Ellie had been hurt. The plain and simple truth is that no one has the power to hurt Ellie anymore. I have unshakable faith that she is in a perfect place where she has no more pain or sorrow... a place where she is free. This hope is what allows my own heart to be free. I would love nothing more than for you join me in letting go of the pain and indignity of this whole situation, and focusing on the good. There is so much good.

Some generous and kind hearted people have been put through a cruel emotional wringer and have emerged with a desire to continue to open their hearts to children with cancer. This is huge. As parents and loved ones of these children, this heartbreaking world we live in begins to feel normal somehow. In the past, I have found it a little too easy to draw others in and assume that it feels as natural to them as it does to me, and to not fully appreciate the emotional sacrifice that they are making. I hope that this story will teach us to treat the emotions of others, whether they are friends, neighbors or celebrities, with great respect and tenderness. These are not their children. They do not have to love them, but they choose to. That is powerful... and fragile.

I hope that our anger doesn’t distract us from keeping our eyes on the ball. I love how united the pediatric cancer community is becoming towards this one common goal – keeping our children alive! That is the focus in everything that we do. I know no one would have chosen for awareness to be spread in this way, but it has happened... and I think it's safe to say that many people are now keenly aware. In my opinion, getting bogged down in the outrage will only muddy the waters and keep our eyes off of what really matters here. Let’s face it, when you have lived the nightmare of watching your child suffer the way that we have, and then watch her die in front of you, something like this hoax doesn’t even make it into the top ten worst things that you have lived through. It just... doesn’t.

One of the positive things that came from this hoax for me personally is that I now have the opportunity to show Ellie's photo and say to the world that she is mine. I wish you could stroke her velvety little bald head and watch Ellie's clear blue eyes fill with such softness and love (focused on you personally), and then quick as a flash turn to a devilish twinkle when she decided that because she was in pain, someone must be slapped. (It was wise to not be the one standing close at such times, although she was polite enough to ask first.) I would give anything to show you the mixture of awe, pleasure and embarrassment that washed over her face when people praised her courage, or took inspiration from her life. Ellie loved, yet also shrank from attention. I wish that I could open a window in time for you to peek through to watch Ellie patiently wrap her long, delicate, butterfly-like fingers around her little brother's hand, and guide him through learning a computer game... Then later lock him out of her bedroom because he was "pesky." Ever the responsible big sister, she constantly questioned my parenting choices: "Mom, are you sure we should let Ethan watch this show?" Whenever she was not secretly plotting to take over the household, Ellie could be found drawing the most beautiful pictures of animals. Most of all, I wish that I could capture and show you the light in Ellie's eyes that was reserved solely for her daddy. John filled her world with so much love, adventure and fun, and she rewarded him with a fierce tenderness.

If Ellie could meet any of you today, she would look at you with those big, wise eyes... and love you. Simply because you're you. Ellie was cool that way. As her mom, just as I was tasked to protect Ellie’s body, mind and spirit in life, I am responsible for her legacy in death - and Ellie’s legacy was love. Just... love.