I always want to figure it out. I always want to know why I am aching so much more than normal.
But even now. Just sitting down behind my computer the tears are already flowing.. And I can’t say for sure why.
There is a little girl, she looks very much like my Jennifer. Aptly named, her FB page is Katherine the Brave. And her mom has shared videos of her. And never held back from showing a snapshot of the brutal and harsh reality of DIPG. How it slowly chokes the life out of our children. .. How it tightens its grip..so cruelly slow. Leaving them completely aware of whats happening. ***moments after I posted this Katherines mom posted she had joined Jennifer earlier this evening. I hope they can become friends. And I am so damned sorry***
I saw one recently .. just scrolled past.. I didn’t need to watch. Because I know. I so intimately know that struggle to have your child breathe.. The fight in them. How much we want them to just let go. To stop hurting even though we feel like we will break apart when they do.
Because thats the very essence of parenthood. To want the best for our children. But how HOW in the hell did I end up knowing giving her over to death was the best for her. The only respite from the pain. From the fear was to die.
So I wished for it for her. I did my best to talk her into letting go. I filmed her final days. Not even Tony knows that.. And I will likely never share it. Its too intimate. She hated being that vulnerable. She hated how much was stolen from her. So unless I have a strong push to share it .. I won’t. .. and maybe not even then.
All parents of terminal children long to change places with their child. And those final moments.. and the moments afterwards I think we do. We absorb their pain and take it on as our own. We carry every moment of their misery inside of us..
Its how I could scroll past the video and not need to hit play.. Because I already knew the gurgling sound. I already knew what it looked like to see the neck of a little girl pull sharply in and out. . .
Those final moments they leave the prison of their bodies.. we enter our prison. As they take their final breath I swear you can almost hear the steel bars locking us in.
The prison of child loss.
I’m so fucking tired of it.
I went to a fundraiser hosted by McKenna Claire Foundation this weekend. A table full of parents like me. I heard the jagged cries escaping a mom as pictures of her son flashed on the screen in front of us. .. I saw two men hold each others hand. Reaching through the bars of their cells to find comfort and strength. .. That image is engrained in my mind. And I wonder. Did they find it?
Another friend had yet another anniversary of the loss of her son. And she wondered aloud how she would survive the end of this year.. when he will have been gone longer than he was here. ..
im so scared for that jennifer.. I’m so so scared for that..
We are all just parents. Not perfect. Just normally flawed parents helplessly in love with our children. That seamlessly went from that… to parent of a dying child. .. Now all parents to children in heaven.
Katherines video is getting so many views. People watching. . I think thats good. .. maybe. If it brings them to action. To do something. Money if you have it. Awareness if you don’t. And your time. Time to fundraise and change things. Because no amount of sorry will bring back our babies. No amount of sorry will ease sweet Katherine. .. But money and action might be enough to help the next kid. .. And none of us can go to bed tonight and be sure it won’t be our child.
None of us are safe.
I know I’m not supposed to say that. I know I’m not supposed to scare people.. But damnit.
We should be scared. We should be terrified. We should be doing something.
Our babies suffered. And now we are suffering for them.. But it shouldn’t fall to us to change this.. They needed us to do something about it years before they got an oncologist.
We need to do something.
Since I am on a roll of doing and saying all the wrong things I will keep it going. If you can donate.. if you can fundraise I ask you to do that. Start right now. You can follow this link and at the end of the page you can choose EXACTLY the kind of pediatric cancer you want your money to fight.
I would have sold it all.. every last dime .. I would have stolen from anybody I had to if I had known she was going to need me to. But by the time I knew .. it was too late. Once its your kid its too late.
So now I try to inspire and ignite.. And tonight I guess I am trying to warn anybody that will listen.
you hold the key sissy
when i see you again
you will unlock my cell door.
…until there is a cure..