Am I?

A year ago was the last day.. likely in my entire life I will have felt hope. Hope. I miss it. Color I miss that too. It seems I see the world always through a haze of gray. A truth in everything I see..

That my daughter is dead.

…and I can’t do a damn thing about it.

It was a year ago tonight we got the phone call about tumor progression. I remember what she was wearing… a blue shirt that said in sparkle letters.. girls have more fun.

i hate that shirt. i love that shirt.

Jonathan was super star at preschool that day.. I miss that sparkle in his eyes.
Jonathan was super star at preschool that day.. I miss that sparkle in his eyes.

I remember making banana muffins with her. She has asked for them specifically. It was just the two of us that made them. The boys sat at the counter and watched. We pretended we were hosting a cooking show. She smiled. She stood. How hard was that for her I wonder? How weak was she already feeling?

I think she knew. I think she always knew she was slowly dying.. I think she could feel the cancer growing within her.. taking over.. Suffocating her little body from the inside out.

That damned muffin was the last thing she ate. By dinner she threw up.. and she never stopped after that.

I made Tony keep getting closer and closer until it was Jennifer and I in the frame
I made Tony keep getting closer and closer until it was Jennifer and I in the frame

I think maybe she was waiting for us to know. After the phone call I remember she just seemed to settle into us more.. let us feel and carry her weight as she leaned into us on the couch. She couldn’t tell us what she knew.. But somehow she knew that we did finally know. And it was a relief to her I think.

Middle of the day we had sat down together… we did a lot of online shopping that day together. She was so excited to pick out things for her little brothers and baby sister. It was a little of what she loved most in life. Time with me.. doing for people she loves and a secret..

i miss her so much. i miss her so much.

I got the phone call right before dinner. I remember hearing Dr Partap on the line.. it was just supposed to be just Dr Shau. But they were both on the line. For just a moment I thought it was monumentally good news. I thought they were calling to say it was gone. Somehow it had shrunk to nothing. It was the end of the day and both calling, those things must have meant something..They did but not what my heart first leapt to.

A moment of high lead to a lifetime of a low I can never accurately describe.

I remember relaying it to Tony without words.. just my eyes told him so much. I remember watching him escape to the garage .. I remember the look in his eyes. Worse than the day we first learned of her cancer was this day. The day we learned she was actively .. and slowly dying.

He looked like a trapped animal. Scared. Terrified.. and wanting to run away and escape. To just get away and save himself. But he didn’t. He stood strong. And has continued to do so over this whole nightmarish year. am i

I went outside to call my sister. To have her tell the family. The news. Not like the first time.. not like her 6th birthday when the call told everyone she would die. But this call. This call that told them she was dying.

dying. I miss that. It is so much better than dead. 

oh that feels shameful. She suffered so much. But now.. its me. It’s us. We are suffering so much.

oh jennifer.

I pulled it together. We had friends over already. . She was enjoying herself. We ate dinner together. And she stayed at the table afterwards with the grown ups, she never did that. But a year ago she did, enjoying watching us eating the muffins she had baked..

I can’t remember tucking her in that night. Damn it. That’s probably a good memory. I can’t remember if she slept with us or in her room.. but I think. I hope with us.

grateful for pictures.. now I know even if I don't remember .. she slept on me.
grateful for pictures.. now I know even if I don’t remember .. she slept on me.

The negative is still so fresh. so burned into the back of my eyes.. but the good feels so distant .. erased from my memory. Trapped only in picture and videos.

Tony and I talked that evening. We made plans. I still have it in my phone. Our bucket list. Because we knew it wasn’t just Jennifer, we had something for each of us on that list.  The things we had to get done.. for her and with her.  We did almost none of it. Her death .. her dying was that slowly intense.

It stole all the things on that damn list.

How did this happen to us? How is this real? How am I here? i?

.. how am i surviving?

… am i?

we had breakfast for dinner tonight baby girl

and banana bread for dessert

am i 7…until there is a cure

24 Responses to “Am I?”

  1. I honestly am not sure how you’re doing it…but you’re doing it…keep going Momma. Why is it I miss your daughter so much? I never had the joy of knowing her. How is it still so unbearable, fresh tears for her every night? It’s cerainly not getting any easier…for any of us I imagine. A big hug to you on this difficult night, Lord knows I could use it too.

    1. I too often wonder Why do I miss Jennifer so much? I also never was blessed to have met her, but yet fresh tears daily . I look at her beautiful brown eyes and angelic smile -and literally try to will her out of the pictures.. to make this be a mistake and she’s still here. .. I get angry and wonder why? Why her? I even catch myself reading another child’s with DIPG page/blog -and get angry that they have had two years and/or are getting those oh so important list of things to do with their families. When i see that her suffering was so much worse..i scream and pray Why God Why?!!# I’m not proud to think that way -and- I pray daily for every child’s page that I follow …Im just being honest at how much Jennifer has touched my heart. ..I cry for Libby and Tony and the time they were robbed of and I can see through pictures Jonathan pain and it’s just not fair! !!!!! I literally get furious that she didn’t get the time she deserved! I think I know why my feelings are so intense and why Jennifer’s touched my heart me so deeply and so very intensely. .I credit some of it to the fact that Libby-you do such an amazing job at letting us all know who your Jennifer was and is. How caring, compassionate and wonderful she was. .. but then i see so many others commenting on how they feel the same and above all I’ve just come to realize that Jennifer is just simply that amazing! !!!! She being that amazing and touching so many lives tells me that it will be her that helps find the cure and finally unravels pediatric cancer!♡♡ She’s just to amazing not to be the one! !!!!!!

      1. i feel the same way. I am still here and I find lately that I have to prepare myself before I read a new blog post. I think about Jennifer and your entire family, how unfair it all is, how I wish I could bring her back somehow!!! I never met her either but i think about her all the time. I am always doing things for my kids, because of her. Just know we are here, with the fresh tears and pain while gazing adoringly at your little girls pictures. Xoxo.

  2. Like usual, most days I don’t know what to say, or what I want to say is so similar to what I usually write. But I want you to know I am still here daily, reading and sending as much love your way as I possibly can.

    I’ve also been trying to enlighten my friends about the American Cancer Society, and the truth about how much they actually put towards pediatric cancer. Trouble is, nobody seems to hear me, or care. Makes me sick thinking about how many “likes” a silly picture on Facebook can get, but only 2 “liked” and only one commented on my post about the ACS. Makes me very angry as well that most people would rather not think about it. Most people don’t want to think about sad things, but this is a reality. I am angry for mothers (fathers and siblings, etc) like you missing their children and for families who are actively watching their children die from cancer. I talk to people about this, but nobody seems to hear me, or want to listen. I am sorry, Libby. I feel like I am failing you personally. I know the reality is I am not, but I can’t help but feel this way. I’m not going away though. I will do what I can to continue spreading the word and do what I can with making sure we get more funding to keep our children from dying from the thing that took away your baby.

    Sending love to you all.

  3. Your words leave me with no words. No words that could ever comfort or bring your beautiful Jennifer back. I am struggling through my own daughter’s brain cancer progression. But today….I will be happy and relish that I have her for another day.
    Chris mom to Zayla

    1. I am sorry you are living this nightmare Chris. If I can help personally please reach out.. and if you want to be involved with Unravel please let me know. This blog is Jennifer.. but the non profit is about all the kids.

  4. Oh Libby. Im so sorry. I will keep fighting for you. I will keep fighting for Jennifer and for every other child in this battle. We will win. Today I will honor Jennifer. I will hug my daughter Eva a little tighter. And say one more “I love you”. Thankyou Libby. Thankyou Jennifer. We love you all so much. Intil there is a cure. ♡

  5. This makes my heart ache and so angry for you all. I wish that this type of pain didn’t have to exist, Unravel is a blessing, what you’re doing is a blessing, Libby. Until there is a cure. Much love to all of you. Always thinking of Jennifer.

  6. <3. My words can never do justice to the feelings I have when I read each post. Jennifer is as spectacular in Heaven as she was here on Earth. <3 Always thinking of you all.

  7. I do know the pain of loosing a child, albeit my 9 year old granddaughter, a child with a twin, a younger sister, her parents and families. So many suffered along with Haylie but nothing like she did. She would still smile at any time, for anyone. I also believe she knew she was dying. Haylie made special items for those close to her, cups that said she loved us-to be given when she said and not before (she never got to give them)scarfs for her dad,mom,and me and her sweet puppy-even though she had never sewed before and never again. I’ve never felt such emptiness even though I lost my own baby at birth. I miss Haylie every day and love her like no one else. Thinking of her always.

  8. I never quite know what to say…I’m not one who is good with words. But this post literally took my breath away. I wish with all my heart that she was still here with you. Jennifer has touched so many lives, mine is forever altered because of her. She reminds me to be more patient, to dance, to have joy. So do you Libby. So many people remember and LOVE Jennifer because of the way you describe her and your love for each other. She was such a priceless gift. Always thinking of you all and praying always.

  9. My heart hurts for you every single day. You have my prayers. Thank you for taking your pain and organizing it….change is coming. I both pray for and feel it.

  10. I wish there were two of you. One that could stay here with your living family and one that could go to Jennifer and be with her.
    But I guess if I’m wishing for things, I wish she were here. And there were no such thing as cancer.

  11. Our daughters are the same age and I often think of your Jennifer when I see my girl. I cannot begin to understand the depth of your suffering and loss. We don’t know each other and I never had the pleasure of meeting your beautiful daughter, but I have cried over every single one of your posts. My heart is heavy for you and reminds me often to pray for you and your family.

  12. I am so sorry you have to live through this hell. So very sorry that we cant wish her back for you. Believe me, we would. I think about Jennifer and your family daily. As always, thank you for sharing your truth.

  13. there really are no adequate words for the loss of your child. It will always hurt and there is a permanent vacuum in their absence. Only celebrating their life gives any respite from the pain. I am deeply moved by your story. My prayers will always include your family.

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