burst the bubble

I can’t even count how many times I have been asked about my take on the Super Bowl commercial..you know the one.. Nationwide and the little boy. I’m not going to go into depth about it because all it is is my opinion.. but I will say the backlash from it scares me.

I have no idea how to penetrate outside my little world with the information I now know about pediatric cancer… because as anybody that has been trying to spread the glitter has learned people don’t always want to hear it. Its depressing and scary and they don’t want to be brought down scrolling through  Facebook or during a football game.. or … well I’m just trying to figure out when a good time is?

See I am too far gone I think. I was the one who turned the channel on any St Judes commercials and those aren’t even sad! But the woman that did that.. the mom that made a donation and then turned away disappeared a little after Oct 28th 2014.. a little after it was my daughter that was diagnosed and I learned that more than it can happen to anyone.. it can happen to me. When I learned that a bald head and a smile is not the real face of childhood cancer.

 

it is darker. it is far more grim. And it is a never ending battle. .. Yet still with a constant shine of hope.. because kids are just that incredible.

One of the truths of cancer. A tiny casket with young love around it.
One of the truths of cancer. A tiny casket with young love around it.

So when I try to remember why I did that.. and how it could have been that I didn’t change the channel I simply cannot connect to it anymore. So I listen and I read about how upset people were for the myriad of reasons they share.. and I hope we as a greater community of pediatric cancer fighters and advocates. .. I hope we can figure a way to expand outside of our bubble.

Because sometimes it really feels like we are just talking to each other.

So if you are a advocate for pediatric cancer and the commercial put you off.. then add that knowledge to your arsenal .. as a way to help you get outside the bubble. To truly reach people that are not yet fighting for these kids…for the 46 that will be diagnosed tomorrow. Use it to help you reach out and truly connect to those people.

Maybe its personalizing things when you share them. Connect it to your kids and why it matters to you specifically .. I think I remember that I read more in depth when it was made personal to me.. If I knew the right answer we wouldn’t be in this place…

But for me personally the commercial was strangely comforting. I am a pretty straightforward kind of person.. confronting all that we are losing head on was easier for me than the happy commercials.

Sitting next to my husband watching the commercials about fathers and their kids.. especially the one where daughters of all ages call for their Dads..commercials that were supposed to be heartwarming..were anything but..

For me that was what was heart wrenching. The losses we live with depicted in a positive light, the light they are meant to be lived in made me want to run away and hide from the underlying truth for us.. that we will never get to watch her learn to drive or pick her up after a bad teenage choice or see her in her wedding gown.

I turned the train of my wedding gown into a christening gown ..
I turned the train of my wedding gown into a christening gown ..

And at some point during this game I stepped away to take a phone call.. from another DIPG parent looking down the barrel of progression wanting to know about tumor donation. The angst in his voice.. a level of pain I somehow miss, because I know it only gets worse.

For me there is no respite from the realization of all we are missing out on.. Both as a mommy to a little girl twirling away in heaven and as a founder of a non-profit hoping to changes the grim realities I am struggling to make people absorb.

We went to visit Jennifer today.. by request of best friend. He had a special rock he had painted for her and really wanted to bring her. We walked around the cemetery and as they often do the boys asked me to read what the headstones said. I usually just say the persons name and pause for just a moment afterwards.

Its always a surreal experience for me. Sometimes I look at them and shudder at how long some people live especially 100 years ago.. Its scary to me. At this point in my life I really don’t want to live well into old age. .. And sometimes I look at them and wonder how long its been since somebody visited. ..and my heart hurts just a little imagining that one day for Jennifer. Right now every time we go we see a new painted rock somebody has decorated and left for her. We all really appreciate it.

I know it won’t last. I haven’t been able to tell the boys that quite yet.. but I guess I should probably warn them at some point. They all said hi to their sister and then headed off like they always do to explore a little without me. It gives me a few moments to be alone and talk with her.. or just stand at her spot.. where her name is forever carved and watch her siblings run.

nationwide 1Today though as we walked around the cemetery together I saw a headstone from a 3 year old that moved to heaven in the 1930’s. It had some fairly new matchbox cars on it.

Somebody had come…

Visited a child that’s been gone for over 80 years..

And my heart leapt forward. ..

you matter sissy miss

you will as long as i live

and

i will fight to make people see

that this didn’t have to happen.

nationwide 3…until there is a cure…

14 Responses to “burst the bubble”

  1. Jennifer matters. She matters to those who knew her and to those, like me, who only knew her through your words. She will continue to make a difference. While it is true that the glitter doesn’t spread as quickly as we would like it to, it DOES spread. I have helped many of my friends with kids realize these horrible statistics. Things we never wanted to know, but are glad we do now.

    The bubble is bursting….slowly, but it is. Jennifer mattered before, she matters today, and she will continue to matter for years to come.

  2. I am right along with you trying to burst through as many bubbles as I can. Because of you and Jennifer, I am smarter, more aware. Those “depressing” commercials mean so much more now. Until there is a cure…means I will continue to Spread the Glitter and remember and honor Jennifer for as long as I can.

  3. Just a note to tell you that Jennifer (and you) DID burst my bubble. I don’t know you and definitely was one to change the channels. Yet, your war has captured me and I continue to read, champion, and spread glitter. I agree, though, that it is unbelievable that this is not on the news 24/7. Babies are dying! It is raw and ugly. I almost feel sometimes that the stories that are captured are the ones where people have found god or religion and that has carried them through. That irks me even more. You, my friend have every right to be angry. But this is not just your fight and we all need to take some responsibility and get angry with you. Even if our own babies are safe.

    You make a difference for me (and why my bubble is bursted) because you selflessly show me the raw and the ugly. It makes me ANGRY! I love Jennifer even though I have never met her and I am MAD. And that, makes me want to do something. So carry on. Keep sharing with me your agony and I will help carry your flag. Even if it feels like you are one of Dr Seuss’ Who’s. I hear you and I will yell with you.

  4. I really like your take on that commercial. I personally didn’t see that the commercial was completely bad so I’ve read a lot of controversial articles on it but couldn’t figure out why I thought that way until I read this post. I’ll keep trying to burst some bubbles!

  5. I love that Jennifer got to wear a piece of your wedding dress, what a wonderful idea you had.

    I am trying to burst the bubble and will continue to until there is a cure. Until there is more funding. Until more people give a damn!

    And Jennifer matters to me as well. Forever.

  6. Dear Libby,

    Your daily posts continue to amaze me and touch my heart. The words you write are so poignant and heart felt. I love how you made the train of your wedding dress into a christening gown for Jennifer. I see Angel Wings fluttering around Jennifer in all of her photos. Just beautiful.

    Love,

    Jan

  7. Libby,
    This last picture of her is beautiful! I find myself noticing if she is using her right arm (in all the pictures you post). I always look into her eyes. I notice things I never would have a year ago. Just another reality you and Jennifer gave me….and i thank you for that!

  8. What a beautiful photo of Jennifer. I thought of Tony during all those commercials. How hard they must have been to watch. The Nationwide one struck me differently because commercials like that are actually pretty common in Ireland. They don’t worry as much about offending I guess. I used to see things like that all the time when I lived there. So I more thought “wow an ad that is being shown in America” than I felt shocked at all. And yes I know that it was probably very painful for people who have lost a child that way but I also thought about how every sentimental ad about watching your child grow must be incredibly painful for parents who have lost their children but we accept those as totally fine. And at least the nationwide one is bringing an awareness of something that takes our children before their time and maybe inspiring a parent out there to take a step to make their child safer. And isn’t spreading that kind of hard but true information what I try to do in Jennifer’s name? In fact I even had a conversation with someone commenting on how they were shocked that accidents were the number one killer of children and he commented “well, I guess if you take away things like heart attacks or cancer which affect adults more” and I got to tell them the facts about the threat cancer poses to our children and spread the glitter. So I guess as painful as that ad was, for a lot of people I am sure, maybe there was value in it. At least from one perspective.

  9. I had many friends complain to me about the Nationwide commercial. Because of you and a pediatric cancer group I now work with, I know that there are hard facts and that people don’t want to see, don’t want to know, don’t want awareness. Yes, it was a hard commercial. I heard it was not a commercial for the Super Bowl. Why not? It is the largest audience there is. I wish, of how I wish, that a pediatric cancer group could afford to run an ad during the big game. Can you imagine? If 114 MILLION people could all be told at once that pediatric cancer is real. It’s happening. It’s taking our children and so little is done about it. That less than .04 cents on the dollar is given to ALL childhood cancers and that 46 children are diagnosed daily. That 7 lose their battle. 114 million! If only I had the money to run an ad. To share the stories, to share your story…Jennifer’s story. Like I said to my friends who were upset with the ad, “Good on them. Some may feel it wasn’t appropriate for the game, but I say good on them. People may have hated it but they are talking about it. Now they know. I wonder what they will do with that knowledge.”

  10. Thank you, Libby. Thank you for “bursting my bubble”. Until I started reading your blog (about two weeks before Jennifer moved to Heaven), I was always the one that turned the channel on the “depressing cancer commercials” and mostly ignored the few pleas that came in the mail from pediatric cancer hospitals and foundations. The moment I read what was happening to your darling daughter, and your entire family. My own heart had been broken in half months before when I lost my best friend, my mother. I was still deeply grieving my own loss when I was drawn into your loss. I know how absolutely hopeless it feels to have your heart torn apart by grief. It made me angry, so horribly angry, to see that you were losing a child…a person who was only able to live for 6 beautiful years. My mother passed very unexpectedly, but she had a fairly long life (passed at age 62). The one you grieve wasn’t given a fair chance to live thanks to cancer. Thanks to Jennifer, I will never again ignore childhood cancer. It is a part of me now, and will stay with me forever. JLK will always be remembered and bc loved.

  11. Libby,
    Jennifer will not be forgotten and the bubble will burst. I work hard to burst the bubble amongst my classmates in the hopes that perhaps one of them will be a part of the cure. (I am currently in medical school training to be a physician.) But I also wanted to tell you a personal story that may give some comfort. My grandmother had an older brother die before she was born during the Great Flu Epidemic of 1918. He was two and loved to play with little toy cars. He has not been forgotten. His name was Gerald and his picture still hangs in our family’s home. We still plant flowers on his grave. It has been almost 100 years since he moved to heaven and I bet you when Jennifer celebrates her 100th year in heaven with you, people down here will still remember her with a smile.

  12. I’ve been a childhood cancer ‘advocate’ since 2012 with the Taylor Swift song – Ronan. It changed me learning what kids with cancer go through and what their parents go through. It gave me some really good lessons on holding my children tight and finding joys in the days…and it taught me to open my mouth. I have always felt that if it is my kid that is next I’d want to tell everyone that I saw and that I’d want to know that people cared…and that is why I follow so many kids. What I found is that so many people that I love and care for simply do not get it — they say it’s just too depressing and can’t fathom why I’d want to follow kids who will die. Honestly I can’t fathom how they can turn their heads away. I find the same to be true about the commercial…and we have to stop turning away from these things that are hard to watch. People need to learn more about the realities that are around us — Childhood Cancer, Accident, Drugs — etc.

    Also I could not stop without saying that the picture of Jennifer in his christening gown is just so lovely. What a special way to honor your wedding and she looks cute as a button. Thank God for pictures.

  13. Hi Libby,

    I haven’t replied to any of your posts in a very long time. Last February I remember EXACTLY where I was when I read the horrible news that Jennifer was gone. I was so sad. I had to pull over in my car just to absorb it, and I then just sat there in such pain for you and your family. Two weeks later I found out that I was pregnant with our 4th….it was a shock (she is now 3 months) Anyway, i am only telling you this because February was a surreal month, for many reasons….and from that point on I have thought about you and Jennifer SO MANY TIMES. It has always bugged me that I haven’t done anything to help. I am going to donate right now, but I wish that I could somehow also utilize my husband’s “pull” in the medical community. He is a physician & graduate of Stanford. Sounds stupid but if you ever need something in the way of a doctor, email me.
    For what it’s worth – I think you are an incredible writer and BEYOND an incredible mother. Your children are sooooo lucky. I hope you know that.
    Hang in there. I’ll never forget you and your beautiful girl.

  14. It may feel like you’re just “preaching to the choir” but the word is getting out there slowly but SURELY, with fluttering, with Facebook shares, with tweeting, with everything you are putting forward. We will never forget Jennifer and there will always be matchbox cars and painted rocks for the sweet ones who left too soon.

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