4 words

The eve of another 12th..

..the last 12th before THE 12th. Before it all just starts over again. And its just another day we have lived without her. .. again.

How much heartache can one little home hold?

Tony is crying .. often. Daily. Its heart wrenching to see the man I love look at me with so much despair.. and I have nothing to offer him. This morning I started to say do you have any idea what we can do to make it better for you. But I stopped myself. Because I know the answer.. and even if there was something I know we shouldn’t be stopping it anyway.

But he is hurting. A constant missing of her. A constant empty and lacking for him. That digs and digs .. and just seems to be unrelenting. And harder each day.

This was something special they did together. He took such gentle care of her.
This was something special they did together. He took such gentle care of her.

I want to help him. Somehow heal a break that I already know will never really heal. Its got to be so hard to be a man in this level of desperate heartache. I am surrounded by people asking.. and really wanting to know “how are you?” “How were the holidays?” He isn’t. Im not even sure if he could anwer those questions anymore.

..he can’t talk about her without crying.

And hearing that. The break in his voice. The pain oozing out. It will always take me right back to that night when we knew she had a tumor but not the prognosis. Sitting in our tv room he swore. No matter what he would walk her down the aisle.

He meant it to. With everything inside of him. He meant it. But we didn’t know then we wouldn’t have any choice in the matter. I think I believed him too. I think I thought there was no way this thing could beat our family. No way it could take our little girl.

We never wanted it this way. Never imagined it this way .
We never wanted it this way. Never imagined it this way .

13 months ago. It did. It stole it all from us. Her future and ours. I never planned to run a non-profit. To have any responsibility other than caring for my children and my husband. I didn’t know the way I was going to do that was this. Unravel.

I can’t help it though. I wonder all the time if she had gotten more time. Not even had the chance to live out a full life.. but just even a few more months what more could Unravel have grown to be while it was still just simply Love4JLK. How many more people could have fallen in love with my daughter while she was still here. How many people would have become invested in her.. because once you saw her.. you couldn’t help but care. She always had that innate ability. .. to make people lean in.

3.5 months from diagnosis to death. I am here now feeling so cheated not out of the years we lost.. but simply the months.

This time last year we were doing our Make A Wish trip to Disney World. I wonder if we would have taken her to the Disney resort in Hawaii? She would have loved that. Or one more camping trip. How many forts we would have built and walks in our PJs?

Where is my pain?

Tony is so full. And Jonathan too. When I look at them I see it. I feel it … for them and from them but not with them. I am scared. Scared for when it does actually hit me. I miss her. Daily. Constantly. But I don’t feel broken. I just feel like I am on auto pilot. Pushing through everyday.. knowing I am one day closer to her.. but tonight it hits me a little. Everyday closer to seeing her again is one day further than the last time I kissed the top of her head and heard her say I love you Mama. mama1

But where is that pain? Its not going to my depths. I feel so distant from my own heart. The pain I feel is watching my Jonathan and Tony hurting so much … I hurt for them. But not with them.  I miss it a little though.. It was a connection to her. And without that the distance between us seems so big.

those 4 words

i have never ached for something so deeply

i love you mama

the way you said it gave me such power

i love you jennifer.

to heaven and back


..until there is a cure..


17 Responses to “4 words”

  1. Libby, I am so very sorry. There are no words to offer in your loss and suffering. Jennifer’s little spirit is in every word you type. God Bless.


  2. I can’t imagine such pain. I can only read it and cry. I wish I could pray away the pain and heartache, but I can’t. We are helpless but we care and miss Jennifer. We love you for what you stand for. We are here for you as much as we can be…until there is a cure…

  3. I can’t believe its almost been a year since Jennifer was taken from you. It seems like only yesterday I was reading the heartbreaking post; yet it also seems like years ago. The amount of pain and suffering your family has gone through since she was diagnosed is enough to fill many lifetimes. And something no family should have to live with.

    Maybe your depth of pain is lessened right now because Jennfier is with you specifically. Maybe she knows how badly you need her and she is focusing on you. I wonder if she sort of flutters from family member to family member as needed to keep some pain at bay. To make sure you all know the depths of her love for you.

    You’re such a great Mommy, Libby. To all four of your children. As a mom I know you feel lucky to be their mom, but as an outsider looking in I know they are also lucky you are their mom.

  4. It is so incredibly difficult to see people in pain and know there is nothing we can do about it. I will say an extra prayer for Tony.
    You are right that JLK was magic in the way she drew people in. But I know personally sharing her story this year, she has continued to draw in more people. Through the ones your words touch, she continues to draw people in. How could she not?
    Today is a rough day, but so is tomorrow. Reading the blogs of those further on this path, I see that there is some joy returning. Never the same as before, but some joy. It is a hope it hold on to for all of you in the months/years to come.

  5. Just a note to say we are still here with you. I hear what you are saying about building a community and how that might have been easier if you could get people to join in her fight. That’s frustrating. Being cheated out of the time. Many hugs to you at an incredibly sucky time.

  6. Almost a year, my god, how does time keep spinning madly on?
    There are no words…just please know, your girl is remembered. Your writings are so full of hurt, but even more so LOVE, they honor her and continue to allow us, strangers, to know and love your whole family. I am so deeply sorry.

    Prayers of peace to you all

  7. Please give your Boys hugs. Let them know there are people who fell in love with Jennifer and are trying their hardest to help your Family Unravel Pediatric Cancer!! I love these photos!

  8. Jennifer continues to draw people in through your words. My hearts is breaking for Tony. I can’t imagine. I sat outside the bathroom last night listening to joe shower with Olive and them singing and laughing together. I never forget how precious that is and how lucky I am to experience it. I NEVER take that for granted. I imagine that most of the time it is little comfort to know your loss has changed so many people when at the end of the day you still don’t get to hold your girl in you arms, but for whatever comfort it does bring, know that it is true. Every time I stop myself and make sure I am present with my daughter my mind flashes to Jennifer and my heart flutters. She is being thought of many times a day in this house and I know in countless other ones. I hope the strength of so many people loving Jennifer and all of you will some how help carry you through. Lots of hugs this 12th.

  9. Words never so true as those that you write. I fell in love with your family and hurt with each blog. I hoped like never before that Jennifer would be the first, Jennifer would show the world…and while her glitter has spread hopes were still lost. Your blogs are always so real, so deep and I have read everyone and shared many too!
    There may not have been a cure for her but her glitter is still spreading and your words and actions and non profit IS making a difference and a difference in hope, in life and in other families like yours.
    I think of Jennifer often, and say her name even more! She didnt have a cure, but she will continue to make the difference because of YOU, Tony and your family! hugs and love

  10. Many many prayers sent to you daily. Jennifer is such a sweet angel and she shines in each and every picture. I agree that she is right by your side giving you strength Libby. LOVE4JLK always

  11. Not a day goes by that I don’t think about Jennifer. My thoughts and prayers are with you and your family, today and always. I will continue to spread the glitter and stand with you in unraveling pediatric cancer. Love and hugs.

  12. I read your history and cannot stop to cry. She ties up me, she makes me furious, she makes me sad and dumbfounded. So a wonderful, beautiful Girl.Is this fair? Why does such a thing happen? Why must children go before parents?? Why? thus the life is not planned. One can ask himself just over and over again, why. But one will never get on it an answer. She is so wonderful – a verry cute princess. Your Blog has so tied up me that I have perused him to me during my working hours since 8 o’clock and have looked – I come from Germany and everything sometimes falls to me a little bit hard on in German to translate, however, I could not click simply wide. Oh God, they is so sweet. . . I wish you so much that you find anyhow your peace – never this pain will heal, one can try to live only with her – every day on new. I press you in thoughts and wish you only the very best, she pays attention to you – on her brothers and sisters – on everybody which she loves and she will always remain a part of you!! (excuses if my English is not the best.) All of love!!!!!!! And you precious little princess – rests in peace and quite a lot of fun with your starry child friends !!!

  13. “How many more people could have fallen in love with my daughter while she was still here. How many people would have become invested in her.. because once you saw her.. you couldn’t help but care.”

    I care and I will never have the pleasure of meeting Jennifer. Her spirit, her essence is here in this blog. I feel like I know her, and you. I care about what happened to her and I care so much about DIPG now that I have read your blogs. You are doing a good thing, and Jennifer is remembered even by those of us who have never met her. The work you do, the money you raise, the awareness you spread, its the best way anyone could honor a child taken by this monster. You are in my prayers, you and your family.

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