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. .

 

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..

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

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.

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.

..until there is a cure..