cool kids table

I’m jealous. Of things I never ever would have imagined feeling jealousy over. But cancer has changed me. Losing my daughter has changed me.

I see the bonds other cancer families have created through time spent wandering the halls of the hospital and I want that. When I see them getting together.. those surviving and those still fighting a feel like I am walking around the school cafeteria with a tray in my hand.. with only one table to sit at. Most of the tables filled with parents who haven’t carried a cancer diagnosis and they look away and down when I walk close.. Truth is.. even when welcomed I can’t seem to figure out how to lay my tray down and sit anyways. The table is too smooth too shiny ..

I see another one and a part of me longs so desperately to sit there too.. Kids that have fought and come out the other side, or are still fighting. The look of sheer terror in their eyes. . terror and heavy guilt .. well it is enough to keep me away.

Because I get it. I think I would be the exact same if I was in their shoes.

I always end up at the only table I am welcomed and that is strong enough to carry the weight of my heaviness.. but its dark there.. and sometimes I just want the light.

So I walk close enough .. to just get a whiff of their food .. To learn. I have so much to learn to help me do a better job with Unravel. Fighting for these kids.. and understanding a journey so dramatically different than my own. . And for that hope.. to see the light that I never got ..  I have this overwhelming need lately to know I won’t always be on the losing side.

Bald heads. Kids that have gotten a chance to actually fight. I am lately feeling so jealous of that.

yes. seriously. i am jealous of families with children going through chemo. Can you ever imagine yourself thinking those thoughts? Uttering those words aloud?

But I do. And I am. Because as I am learning I am not alone in those feelings. It seems to be a fairly common chorus sadly hummed throughout the DIPG world, in the dark deep recesses of our hearts. . a melancholy melody none of us really want to give words to.

That we wish our kids had a chance. That we had any way to really fight.. instead we throw our arms in the air and reaching blindly and desperately for something to grab onto .. only to open our hands and find them empty still. .

Our only options were radiation and steroids. There weren't even any clinical trial options she could get accepted into.. So for 7 weeks her face was bolted to a table under this mask.
Our only options were radiation and steroids. There weren’t even any clinical trial options she could get accepted into.. So for 7 weeks her face was bolted to a table under this mask.

 

So I share and I say it aloud. Because its dirty and its embarrassing .. but its ok too.

As I write more comes to me though.. the gifts of DIPG.

I got to know.. although doubting it… always hoping. . I got to know. I got to try to prepare for her to be gone. All of my early writings,  late at night after I had gotten baby Charlotte asleep in her makeshift kitchen/bedroom in our apartment.. and Jennifer asleep in our shared bed I would write. Here is a video she made in our little “home away from home”.

Every night I would unleash my ache and my fear. I would prepare.. Even if I wasn’t exactly sure that’s what I was doing. ..

I can look back now and read. And see.. my insight… the truth that was breathing down my neck..

With DIPG I knew to never use the words “cure or heal or go away” in regards to her tumor. I said “shrink tumor shrink” I said we were trying to make her feel better. And she got to keep her hair and leave the hospital.

We knew there was a chance she wouldn’t live long past diagnosis so we were able to push her Make A Wish trip and move the date up of her Fairy’s wedding..

I got to watch him walk her down the aisle and dance at a wedding truly created for her.
I got to watch him walk her down the aisle and dance at a wedding truly created for her.

We knew to jump at the opportunity to do a glitter photo shoot. (still a favorite video!)

She was so proud of this platter.. Decorated with her rainbow handprints.
She was so proud of this platter.. Decorated with her rainbow handprints.

I had time to create and make handprints and buy presents from her to her siblings and friends. I was able to record her singing happy birthday to her Daddy and all her younger ..

…oh no. Not Bridgette…

Damnit. Damnit Damnit.. That day we recorded her singing to Tony then Jonathan, Nicholas and Charlotte she didn’t want to sing to me. Too silly. I hate it. I am .. no drumroll needed.. I am jealous that I don’t have that for me. .. But I just realized my sweet Bridgette will share that boat with me. . damnit.

I am grateful for this sweet face.. I hope I can carry her through the heartache she will experience.
I am grateful for this sweet face.. I hope I can carry her through the heartache she will experience.

whisper to her jennifer .. every year baby please whisper happy birthday to her..

I will always carry that undercurrent of jealousy that seems to come along with that cruel string of four letters.. DIPG. Some days it will still be crippling like its been lately.. Overtaking my thoughts constantly.. But I will also try to remember more that just that.. I will try to remember the gifts that came with it too. .

There is no good way to lose your child. Because no matter how it happens you are born into a new life nobody wants.. and it doesn’t matter how you got there.

Because each tale carries its own beauty and its own tragedy.

its your story.

and thats got to be enough

to make it beautiful

and

something to be proud of.

K-2014-01-04-213

..until there is a cure..

 

11 Responses to “cool kids table”

  1. You have so much courage, to talk about the struggle and your thoughts. Thank you for being real and speaking your truth. You truly are amazing and I have no doubt that Jennifer walks along with you and holds you in your weak moments, and smiles and beams watching you in your strong moments. Your words, so raw, so real, so honest and human. Sending love all days.

  2. Your courage is so inspiring, always. You turn anything that could be a weakness into a strength. That is something I would be jealous of if I wasn’t so totally inspired by it. Sending love always.

  3. Being jealous makes so much sense. I’ve been jealous for much smaller things. Losing JLK and Natalia has put me in my place. And I’m jealous for you and Andora that you got ripped off. Both you Mommy’s are making a difference for thousands of people and I’m so grateful to see a glimpse.

  4. Tears, tears, and more tears. I have asked myself over and over, “why couldn’t it just be something else we could fight”. I too have always felt jealous and angry that it wasn’t something else and felt terrible thinking that way. It’s been almost 19 months since I lost my daughter Alex to a DIPG. Your words touched so close to my heart. Hugs to you 😢

  5. For me the “cool kids table” hunt came after my son Tommy died. I wanted to find a way to give back for all the support we’d received…to stand in the gap for another family still in the fight. I looked around at the different organizations, groups, etc. and I kept thinking “I can’t do that; my son died; I’ll show them a future they don’t want to see; how could they want my support”. I was jealous of those families still in the fight; their lives still had deep meaning; they could still get up every morning knowing that their child’s existence actually depended on their ‘showing up’ and doing the things that needed doing. To say nothing of how I envied them for still getting to hold the hand, kiss the cheek, feel the warmth of their child’s smile.

    Eventually I did find a way to give back … i became a blood donor. My donation supports those kids and families in a very real way, and I don’t have to risk exposing a family to a future they aren’t ready to consider and which might not be theirs anyway.

  6. Libby,
    After reading this I went back in time. It’s hard to believe this starts year 3 without JLK. I went back to 2013 of your blog and just reread what you were posting. It helps to get to know Jennifer again. I read about the grand Marshall then read the next year’s, read about the beach house. The beautiful memories you made. None of you are ever far from many peoples thoughts. I hope it helps you to know thousands of people think of you ever day and remember Jennifer.

  7. Your courage is so inspiring. I don’t read much, but I feel like I should read this and I am inspired by yours and your Jennifer story. It helps to get to know Jennifer. Thank you very much for this post.

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