flash

flash..

Today it starts I guess.. flashes.

Constantly.

Of her final weeks.

I feel like I am suddenly on the verge. Scared I am about to topple off.. Because I know its not a matter of it.. simply of when.

But I can’t do this right now. I leave tomorrow for Seattle to give the amazing Dr Olsen a check from Unravel. Jonathan is missing school and coming with me. I need to not be a shell. .. So I hope by diving in.. and sweeping out the cobwebs of my mind.. maybe I can be more ..

Because today was sudden. ..

flashes.. moments..

horrible and beautiful.

Walking down the hallway past what was Jennifer’s room.. now holding a sleeping baby that never got to meet her biggest sister.

a flash that stops me.. Solid. I try to grasp and savor it. The weight of her.. How tiny she was. The feel of her bony body in my arms .. the way her long fingers felt interlaced with mine. .. But especially this moment of my body remembering the feeling of her wrist.

Simple. But it was her. I was connecting to her again. Her wrist. Her veins showed through.. but there was a solid warmth to it. ..

This was when she was still doing so ok.. She suffered. Terribly. Don't look away. If she lived it. We need to honor it.
This was when she was still doing so ok.. She suffered. Terribly. Don’t look away. If she lived it. We need to honor it. And to prevent it from continuing to happen.

The wasn’t the one that kicked me off down this slippery slope.. The first of the day was a blanket .. the one she laid under in her bed.. I chose it because I knew what happens when a persons spirit leaves there body.. And bedding can be ruined. So I wanted something that I wouldn’t be overly sad to lose. I caught a glimpse in the hall closet… just a corner of it.

flash.. bright and brilliant .. and horrific. A moment I didn’t even see but that is painted in my minds eye. This flash blinded me.

The man that we didn’t know. The one that carried my lifeless daughter to the car. To drive her to the hospital to finally take those fucking tumors out of her. .. So we could give her in death what we couldn’t in life.. Freedom from cancer. And so she could keep fighting.. so she could be part of the cure. .. 

Jonathan looking at the living pieces of his sister.. Her cancer.. Helping to save other kids.
Jonathan looking at the living pieces of his sister.. Her cancer.. Helping to save other kids.

2 years ago. We got the call. The one that broke me in a way I didn’t know I could break but still stand. Fall apart but stay whole.

For her.

“The tumor on her pons shrunk.. but the cancer has progressed. Its in her frontal lobe and down her spine. Its time. For Tony to take off of work. I’m sorry”

I remember going outside and calling my sister. I remember wanting to run.. until my lungs burned … and scream until I was turned inside out.

I didn’t.

I went inside. We had friends over. I don’t know how any of us made it through that.. I just looked at them and shook my head no. They knew.

She didn't want to let on..
She didn’t want to let on..

The thing none of us wanted to know..

but you.. sissy you knew huh.. you already knew.. 

damn. 

You never ate again. It stole you slowly and fiercely… piece by piece.

.. but once we knew.. I feel like I can see the weight lifting off of you.. Because we knew...
.. but once we knew.. I feel like I can see the weight lifting off of you.. Because we knew…

I can remember it all so vividly inside my body but I can’t recount it accurately .. Its like these weeks became part of me. As important as breathing but as impossible to explain.

Its something that overtakes more than me actually remembering any of it. But why? Its not fair. I don’t want these memories to be the most vivid I have of my daughter.

I want to remember how she felt in my arms with weight to her.. And joy coursing through her veins.. not morphine. 

13302873733_8bb622342e_z 13301590903_71a874aebf_z

damn.

flash. flash. flash. I can’t turn it off.

flash

flash

flash.

oh honey

my jennifer

im so sorry

oh buggers..

no no no no no no no no no

13118963063_b6c9d41c79_k..until there is a cure..

 

 

9 Responses to “flash”

  1. Libby, As I read your memories of Jennifer’s suffering and passing, I can only say, “Wow!” It’s horrendous the pain your little daughter went through, and now you are carrying it and feeling it in your heart and mind. I admire you so much. You and Tony made one of the most difficult and unimaginable decisions in a parent’s life. Your courage, strength, and love for Jennifer is amazing. When you learned that DIPG was incurable, you made the ultimate sacrifice to not put Jennifer through surgery after surgery. God Bless you, Jennifer, and your beautiful family. Thank you for sharing Jennifer’s life and story with the world, so that another child might be saved. … until there is a cure … 🙏👼💞

  2. I felt your pain and I know it was only the tip of the iceberg. I just stare at her pictures wondering how it’s possible such a perfect child could get cancer. She’s just so lovely…I am glad you have so many pictures.

  3. I don’t have words to describe how much heartache I feel for you and Tony. For people I’ve never even met, yet know the darkest pieces of your existence. I think of Jennifer daily…many times a day, in fact.

    I am an outsider looking in that feels so much deep sadness for your loss. I can’t pretend to know how it feels. I lost my mom 2 1/2 years ago and I still feel days that I don’t want to function…days that feel long and short at the same time. It’s different than your pain, yet similar. I can’t even grasp in my mind how it would be if it were my daughter instead of my mother. My brain won’t let it happen. It’s just not natural…a parent burying their child. It should have never happened. The world should have already had a cure for her.

    I see people who ignore the facts of pediatric cancer and want to scream to them that they would care more if it were their child…and it could easily be one day. Why do people choose to keep their eyes closed when it is so important to keep them open? I pray that you can feel the support and love from everyone who cares about your family…about Jennifer. On days you can’t stand, I hope you feel the warmth surrounding you. I know it is a poor substitute for your forever 6 year old daughter, but I hope it helps carry you until you see her again and smell the precious smell of watermelon with her by your side. We will find the cure…Jennifer leading the way.

  4. I, too, am an outsider. Yet, we are going through our own hell with a very spcial little girl having the same diagnosis as your Jennifer. Upon learning of Em’s diagnosis at 3 yrs. old the family and close friends experienced such total devastation. Her parents researched and vowed that every day that Em was with us would be a perfect, memorable day. Three years later, after several experimental studies, we are losing the battle. This is the MOST accute pain, I, the outsider, is experiencing. I cannot begin to imagine the pain her immediate family is living. Your storry was so comforting and courageous for all who have read it. Thank you for allowing us, total strangers, to read your words that we, too, are feeling. God, PLEASE bless Jennifer’s family with continued strength of spirit to carry on. Until there is a cure…

Leave a Reply

Your email address will not be published. Required fields are marked *