prison

I always want to figure it out. I always want to know why I am aching so much more than normal.

But even now. Just sitting down behind my computer the tears are already flowing.. And I can’t say for sure why.

There is a little girl, she looks very much like my Jennifer. Aptly named, her FB page is Katherine the Brave. And her mom has shared videos of her. And never held back from showing a snapshot of the brutal and harsh reality of DIPG. How it slowly chokes the life out of our children. .. How it tightens its grip..so cruelly slow. Leaving them completely aware of whats happening. ***moments after I posted this Katherines mom posted she had joined Jennifer earlier this evening. I hope they can become friends. And I am so damned sorry***

seeing her headstone for the first time.
seeing her headstone for the first time.

I saw one recently .. just scrolled past.. I didn’t need to watch. Because I know. I so intimately know that struggle to have your child breathe.. The fight in them. How much we want them to just let go. To stop hurting even though we feel like we will break apart when they do.

Because thats the very essence of parenthood. To want the best for our children. But how HOW in the hell did I end up knowing giving her over to death was the best for her. The only respite from the pain. From the fear was to die.

So I wished for it for her. I did my best to talk her into letting go. I filmed her final days. Not even Tony knows that.. And I will likely never share it. Its too intimate. She hated being that vulnerable. She hated how much was stolen from her. So unless I have a strong push to share it .. I won’t. .. and maybe not even then.

She was worn down.. in the end she was just a shell of her former self. This was over 10 days before she left .
You can see .. that end stage cancer look to her. But also notice the pink princess comforter .. Watching Frozen on the computer.. End stage cancer.. but just 6 years old.

All parents of terminal children long to change places with their child. And those final moments.. and the moments afterwards I think we do. We absorb their pain and take it on as our own. We carry every moment of their misery inside of us..

Its how I could scroll past the video and not need to hit play.. Because I already knew the gurgling sound. I already knew what it looked like to see the neck of a little girl pull sharply in and out. . .

Those final moments they leave the prison of their bodies.. we enter our prison. As they take their final breath I swear you can almost hear the steel bars locking us in.

The prison of child loss.

I’m so fucking tired of it.

I went to a fundraiser hosted by McKenna Claire Foundation this weekend. A table full of parents like me. I heard the jagged cries escaping a mom as pictures of her son flashed on the screen in front of us. .. I saw two men hold each others hand. Reaching through the bars of their cells to find comfort and strength. .. That image is engrained in my mind. And I wonder. Did they find it?

She told me heaven smells like watermelon.. I saw this lone watermelon bag walking through the airport.
She told me heaven smells like watermelon.. I saw this lone watermelon bag walking through the airport… Right in the middle of the Hello Kitty display.. I hated Hello Kitty. I think she liked it just to spite me. So this was pretty perfect!

Another friend had yet another anniversary of the loss of her son. And she wondered aloud how she would survive the end of this year.. when he will have been gone longer than he was here. ..

im so scared for that jennifer.. I’m so so scared for that.. 

We are all just parents. Not perfect. Just normally flawed parents helplessly in love with our children. That seamlessly went from that… to parent of a dying child. .. Now all parents to children in heaven.

Katherines video is getting so many views. People watching. . I think thats good. .. maybe. If it brings them to action. To do something. Money if you have it. Awareness if you don’t. And your time. Time to fundraise and change things. Because no amount of sorry will bring back our babies. No amount of sorry will ease sweet Katherine. .. But money and action might be enough to help the next kid. .. And none of us can go to bed tonight and be sure it won’t be our child.

None of us are safe.

I know I’m not supposed to say that. I know I’m not supposed to scare people.. But damnit.

We should be scared. We should be terrified. We should be doing something.

Our babies suffered. And now we are suffering for them.. But it shouldn’t fall to us to change this.. They needed us to do something about it years before they got an oncologist.

We need to do something.

Since I am on a roll of doing and saying all the wrong things I will keep it going. If you can donate.. if you can fundraise I ask you to do that. Start right now. You can follow this link and at the end of the page you can choose EXACTLY the kind of pediatric cancer you want your money to fight.

I would have sold it all.. every last dime .. I would have stolen from anybody I had to if I had known she was going to need me to. But by the time I knew .. it was too late.  Once its your kid its too late.

The innocence and trust you can see in her eyes in this picture.. If only I had started to DO something when she was this age..
The innocence and trust you can see in her eyes in this picture.. If only I had started to DO something when she was this age..

So now I try to inspire and ignite.. And tonight I guess I am trying to warn anybody that will listen.

you hold the key sissy

one day

when i see you again

you will unlock my cell door.

DSC_0989

…until there is a cure..

15 Responses to “prison”

  1. I have thought of Jennifer whenever I was following Katherine…day in and day out. And, I have thought of you…wondering what you must be feeling, watching…because I knew that you had to be watching. I, too, hope that Jennifer and Katherine are together. I know that they are both going to make a change for the future. They just have to. ♡♡

  2. I’ve always thought Katherine had a striking resemblance to your Jennifer. It made it so much harder to follow her story- I follow so many. I’ve never been able to look away and not try to help- even if it’s just awareness. I’m a walking awareness machine ready to spew childhood cancer facts to anyone and everyone that will listen, and even some that wont. It’s what we’ve got to do- people need to know. It’s what we do. Someday DIPG will have a cure rate. I just have to believe it.

    I think of your family everyday Libby and love to see your raw expression in your blog. Hugs to your sweet family.

    Jennifer O’Dell (St. Jude)

  3. Cancer sucks and it does scare me. It takes my breath away when I imagine the moment losing a child. I read every article about cancer research development and hope that one day we are gonna fight it. And we will fight it because of Jennifer too. And because of you the strong mom!

  4. My son Christian passed away from DIPG just two months ago. I never told him that he was going to die because he was just four going on five. On his Facebook page, he chose his pictures to be posted. Until the last two weeks of his life. Watching him declined so rapidly (within two weeks) after eight months was so heartwrenching that I basically started breathing the way he would thinking that I could urge him to stay with me and his brothers. My son now is running around the fields of heaven, where he ought to be. Free of pain.

  5. Libby, I am sorry. But I am active. I think of you all everyday. Especially Jennifer. ♡ Love to you all. We love you Jennifer. ♡♡♡♡♡♡

  6. I started following Jennifer’s story because I was scrolling on Facebook and saw her face…I had to do a “double take” because she looked so much like my own daughter, Courtney, who was only (almost) 4 at the time. I was shocked when I found out that this beautiful little princess named JLK was dying of a terminal cancer I’d never heard of.

    I’ve donated to Unravel every month since you founded it. I have told my entire family about DIPG, the thief in the night that steals children. I now work with The Cure Starts Now, because I am so horrified by what happened to your daughter…and what could happen to mine.

    Over the past year, I’ve followed Katherine’s story. I met her mother online about about month after she was diagnosed last summer. Neither of us could believe the resemblance between Katie and (my daughter) Courtney. We discussed how similar our girls are, physically and in personality.

    I am completely broken over Katie’s death. I didn’t sleep last night…I just cried. Because I knew that Jaime and David are now going through the same hell as you and Tony. It’s unacceptable. I am so sorry. More than being “sorry”, I promise to be active in finding the cure. DIPG has robbed too many children of their lives, and sent too many parents through a fate worse than hell.

    Now, I mourn two beautiful little girls…both precious angels who looked just like my daughter, who is now 6. Is she next? I worry so much about it…oh how I fucking hate DIPG with every ounce of my being. I would do anything to bring Jennifer and Katie back…anything. I am still in denial that Katherine is gone. My heart is so torn up by the loss of two little girls that I never had the pleasure of meeting…but who I felt such anything connection to.

    When I cry for Jennifer, I now cry for Katherine as well. I will wear my “Love4JLK” bracelet and my “Katherine the Brave” bracelet every single day, and tell their stories to everyone I meet. We will find the cure. I am eternally sorry we didn’t find it in time to save your daughter. I will fight DIPG until the cure or my dying breath. For Jennifer, and for Katherine.

  7. And Katherine the Great died on what should of been my Zayla’s 15th birthday. The first birthday without my sweet girl. It’s so fucking unbelievably unfair. And you are right….it is a prison. Our children are now free….and we are stuck here.

  8. Libby, say the wrong things loudly! As loud as you can. I saw Katherine when you posted…. I’m terrified it’s my kid next. As we all should be. The thought that it can be your child is going to push people to fight! Today I mourn Katherine and share. A few days ago it was brooks, a few years ago Jennifer Gabriela Ronin and Ben, holding out hope it will never be Elayna, cannon or Emily… but we just don’t know. Their names are not forgotten and their faces are remembered. Little kids forced to fight.

  9. I follow Katherine as well and yesterday I set up my recurring contribution to Unravel in her honor. This year I’ve also raised $1500 for Unravel through various local fundraisers and am starting my volunteerism with Make a Wish NM. I am active for Jennifer and for Katherine. I am active because I am terrified for my two young daughters. I am terrified of cancer striking them. And I am angry that more isn’t being done. I will pen a letter today to the representatives in Congress who have yet to sponsor the STAR act and I will demand action.
    Thank you, Libby for saying ‘all the wrong things’. If everyone who has seen Katherine’s video would donate just $1/month, we would raise $36,000/year for DIPG research. What could we achieve if we did more than shake our heads and pour out our collective grief for DIPG families? It’s too late to be sorry for Katherine. We have to be more than that. We have to be the change we want to see.

  10. My daughter Kaelyn and I have been following your blog, your Jennifer for sometime now. Well Kaelyn having to do 2 8th grade genius projects she chose to raise awareness. The first was for Jareth, her 7yo brother with autism, and the second was inspired by Jennifer. I wanted to post the link for you. Its not a lot, and it only has circulated her school but I was proud of her. I want you to know your words and Jennifer’s legacy is reaching others. We fight with you. Much love…..

    http://piercemychemicalbr.wix.com/ccap

    Kaelyn says she hopes you don’t mind her using Jennifer’s story.

  11. Katherine reminded so much of Jennifer, Jennifer was the child i learned about DIPG from, I never knew it exsisted till I ran acroos Jennifer, I want to believe Jennifer welcomed her into heaven and they are playing, rest easy KatherineTheBrave, you and Jennifer deserved so much more than just 6 and 7 years, I am so sorry there is not a cure and little hope, hope for all suffering and those yet to come.

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