October is my train.

October..

Waiting for that crash.. Standing beside the train tracks.. wind blowing hard and fast against me.. and nothing I can do to stop it.. I feel it though. My whole body trembles as I feel the sheer power and force of the train barreling towards my little family.

October.. This month is that train.. Her birthday also the day she was diagnosed with cancer, its the start of it all.. For all the holidays that hurt so much without her.. The ones that now symbolize her short but fierce battle. .. so its not just the stark reminder that one is missing.. its also the memories of our last holidays with her.. When we knew she would die..

i didnt know.. sissy i didnt know you were already dying.. 

I see a video.. and I watch it.. willing me to just find her in the frame. Its all I see anymore in the old videos.. is the glimpses of her.. How angry I get at myself for not keeping the camera on her longer..

Yesterday filming 3 of my 4 living children .. I made sure to give each of them equal time on camera.. To capture their voices and their movements.. I knew it as I was doing it.. It felt both terryinfing and fulfilling, a safety net I had no control over creating. The thoughts came and I had to listen to them. ..

i am so scared to lose one of them.. please jennifer protect them.. 

They are too.. I hate that. I hate how scared they are that they will die also. Driving to school earlier this month the tree where her bench is caught my eye… The kids and I all looked at it while we stopped in the pick up line. The bench that helped me through this day and this one also where my deepest desire was simply for her to be more than just a bench.

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It was beautiful and sparkly in person.. The pictures didnt capture that .. but it was!

Nicholas struggled against it immediately .. He told us they must have decorated it because thats where sissy died.. we went over it again.. That she died at home in her bed.. in my arms. .. He seemed to get it, but I’ve thought that before. This day I even had him repeat the words

But then.. then with the same certainly he asked if I would bury him like I did Jennifer. 

Death wasn’t the question for him. The only question was what I would do with him afterwards. 

“Oh buddy, Mommy should die before you. When I am old and you are grown up and you are a Daddy. You will bury me next to Jennifer.” .  … “Because son kids aren’t supposed to die.”.. 

” But mom. Jennifer died. You couldn’t protect her. “

She loved him.. so much. Her imprint on him is forever.
She loved him.. so much. Her imprint on him is forever.

i’m sorry jennifer. he is right and i am sorry

Charlotte really wanted to go see it up close so we did. We walked over to it and saw that the entire thing had been decorated. She mattered. We didn’t know to who or even why at that moment.. but we didn’t care. We just knew she mattered.. she was remembered. She should be. She was amazing.

I wonder who she would be now? Well kinda. Because I can’t picture it. She will never out grow her princess comforter .. or Gilroy Gardens. .Or tea parties.

I planned a last minute birthday party for her. Not really a fundraiser since it will just be a kids tea party. But I wandered into this place down town and thought how much she would have liked it.. And they knew our story.. so we planned this thing. ..

But I don’t have anybody to invite to it. .. Because I don’t know who would be her friends. I see the kids in her class,  they are so changed now. Taller, thinner.. older.

Her birthday.. before we drove back to the dr.. when we found out her brain tumor was terminal. They allowed her to come to school and they sang to her and celebrated her.
Her birthday.. before we drove back to the dr.. when we found out her brain tumor was terminal. They allowed her to come to school and they sang to her and celebrated her.

She should be inviting them to her party. . Instead its just a stupid Facebook post.

I thought it was a good idea.. Now I’m not so sure.. Because it’s just a empty fucking room.. And in the end, the truth is even it was full.. every room feels empty without her.

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I still look at these pictures and I can’t believe we made it through so well to the end of this day.. How we pulled it together enough to still celebrate her birthday and make it a happy day for her.

106 days later she was gone. She is gone.

I have so many questions .. the same ones I always ask this time of year. Simple almost nonsensical questions.. Maybe my mind forgets on purpose? So I can still be learning new things in regards to her.. Did the cousins know anything yet? Did the other adults really know yet what it meant. What DIPG could really mean?? Who called them? What did they say?

and to you..

was it ok?

were you happy?

oh baby..

mommy says be happy.

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…until there is a cure..

10 Responses to “October is my train.”

  1. She will always be remembered. Even to those students in her kindergarten class that only got to know her as a classmate for a few months. Kids absorb so much that we don’t realize. Each of them will remember her. Remembering her won’t bring her back, but it brings you so much closer to her…like you can almost touch her. That won’t fade. She left an impact on so many lives. Even those who never got to meet her, like me, and my daughter (who is now 6). Jennifer’s memory is more than a bench or a face in a photo…it is alive, in it’s own sense. And that will never, ever die.

    I’m so sorry that life is so empty without your sweet sissy girl. You hold so much guilt, but I hope you realize deep down that nothing about her dying is your fault. If love could have saved her, she literally would have lived forever. You did your job. You protected her to thee best of your ability…you are only human, you have no supernatural powers, although you will it to be that way when your children are in trouble. But you can’t help being human. The only thing that could have saved her is the cure for DIPG, and that was out of your hands. If people would have been made aware 60 years ago, if they would have talked about it and gotten angry, we might have had the cure.

    You are helping Jennifer make a huge difference in the world. 60 years from now, a little girl will be diagnosed with DIPG. Just like Jennifer was. Only difference is that she will be given a cure, and live…because the cure would have been found years before. That cure will be possible because of Jennifer’s tumor donation and your work at Unravel. That is what we needed 60 years ago, but it didn’t happen. It isn’t your fault that it didn’t happen, but you are making damn sure that it happens NOW. I pray with all my heart that you know that no guilt rests on your shoulders. Jennifer doesn’t blame you, she knows you did everything you could to save her, the tool just hadn’t been invented yet. Your living children will realize this, too.

    Sending so much love to you…and promising to stand beside you in DEMANDING the cure for future children diagnosed.

  2. So very heartbreaking💔….Unravel and fluttering will make a difference- children deserve more than 4. #love4jlkalways

  3. I love how you are being active. It meant so much to come to the Livermore event and learn more about your story. Thank you for sharing and working to fund pediatric research. Much love to you and your family.

  4. I have read this blog for so long, as I have others for children affected by this horrible disease. Little did I know that this awful DIPG monster would raise its ugly head in a family we are close to. It stole a lifetime of memories of their little girl too. Destiny was 5, and the future wife of my son acording to her! Knowing what was coming was so hard for me, but to see my kids go through it was heartbreaking. Trust me when I say kids remember, but what they remember is different. We would all sit together and they remember the fun things-the laughter, the smiles, the joy of being friends and spending time with Destiny-that I don’t. Maybe it’s their innocence that shields them from all of it or maybe it’s our adult brain having the recognition-I don’t know. Whatever it is, though, I am incredibly thankful Jennifer had that time with her classmates to have fun, to laugh, and to enjoy that time with each other.

    Sending love to you and your family.

  5. Libby, you are your Princess Jennifer’s warrior. Jennifer will always be remembered. She is every white butterfly my grandchildren and I see to this day…until there is a cure

  6. I have no words. I just don’t, because I know that anything I say will sound empty, and that words from a stranger will just echo around the hole in your heart. I am sitting at work and crying for your loss but am at least comforted a titch knowing that you and your family are doing such amazing things for pediatric cancer research. My little boy, who is three, and I LOVED putting our little dragonflies out for our neighbors. Thank you for helping me to teach him what matters. He was born three months premature, and I still live in abject fear that I will lose him some day. The only positive thing about that experience is that I never rush through bed time. I have more patience. I try my best to soak in every second I have with him, because I didn’t know whether or not I was going to get to keep him here with us. I know you feel the same way about your children, and I hope one day they understand that what happened to their sissy was not what is supposed to happen, that they will live long, full, happy lives filled with love. Peace to you this month. Stacie (friend of Heather, from undergrad)

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