When it starts, it’s like a flood. But instead of hearing it, you feel it. An odd thought, or a chill down your back. And before you know it memories of her last breath engulf you and seep into everything that you are doing at that moment. It all becomes one suddenly. That life. This life. The emotions. It drags you down deep into the hell you lived for so long. And her suffering. The suffering is the worse. The memories of her humiliation, and the loss she absorbed as her 7 year old body was wilting away, while her friends and cousins were exuberant and blissful. She watched it all, and felt it, and fought it when we all gave up. She didn’t blink.
The loss of her and of our happy life consumes me sometimes. Once it hits you there’s no controlling it. You either deal with it at that moment, or later. Work, car, store, an event. It doesn’t discriminate. Just like #DIPG. There’s nowhere to go. The effort to crawl out of that painful breadth is staggering. You can’t imagine how a person going through what we have gone through could take one more step, make one more move, continue that conversation, breathe. But we do… I’ve sat there and shuddered, shaking my head from side to side, closing my eyes, blinking really hard all at once to get it out. Literally like a movie, using my supernatural powers to expend any pain or suffering from my thoughts. Anything to try and get it out of my head. After a bit I can push it way down, until later when I’m alone. And I won’t lie. I’ll tell you why I’m being a jerk and ignoring you, or not focusing. And then I’ll move on and make it look easy. But it’s not… It’s like suffering all over again, and neglecting the issue as I did then. Hoping it will go away and just leave our family the hell alone. It didn’t.
I’ve aged years since Katherine’s diagnosis and death, and my mind and heart went with her. I’ve tried to find it, but it’s not there. The mom I was. The wife. The friend. And I care so much about that. So damn much its sad. And that worry has just aged me so much more. The worry about all of it. Mom, Wife, Employee, Daughter, Sister, Cousin, Friend… All of it. So much so that I shake before anything preplanned, uncontrollably. And I will shake all day. Sometimes I feel something pushing me down and preventing me from leaving my own house, or moving forward. It’s awful. And it makes me bitter. Then I make excuses. Then I cut people off to avoid it. Something I never did before…
I guess watching your child die will do this to you. It would take something big like that to keep me from being who I was before. Back when no one could break me, and I was a rock for so many. I got nothing… Nothing more to give.
Words of advice… Don’t
- ask me to reach out if I need anything, you should reach out to me, or no one will. I admit it…
- ask me how I’m doing and expect the truth. I will say fine, or miserable, or getting by, and then change the subject. Why make us both miserable.
- reach out to me and not follow up because you haven’t heard back from me. I can guarantee you that I got the message. Closed the message. Thought of a response. Got anxiety. Decided not to respond. Waited days to feel guilty. And then responded too late. Ya… Another text might have helped me along with that. Or just not getting upset if I respond too late. My bad…
- get mad when I cancel. Again. And again.
- get mad when I don’t reach out with thank you’s for all that you have done. Trust me, you’ve done more than I would have done. I know that, but I don’t show it because I can’t show anything real right now. Even to myself.
- be shocked when I’m late all the time now, when I never was before. Just be glad I made it. You don’t know the mountain I had to climb to be there.
- be upset if I don’t go up to you at a party and say hi. I’m not the person I used to be. Please say hi to me. And not cautiously. Or as if I have a disease.
- expect me not to be upset when you haven’t reached out at all, or nearly as much as you did when my kid was dying. That is LITERALLY like a stab in the back to a mourning mother. I never knew that before. And I would wonder why so many people cared. Now I wonder how it’s possible that all of those caring people don’t care anymore. It kills me inside.
- pretend I don’t remind you of the possible fate of your healthy living children. I know I do. I see it in the arms distance relationships that have happened more and more lately. I see it in your eyes. I your words. I know interacting with me is sometimes difficult because I remind you of every parents worst nightmare. I can’t pretend I don’t. And if you treat me like I do, I will exit stage left… swiftly.
I’m sorry Katherine. I miss you mongrel. And I’m sorry to all of my friends and family. My daughters, and my friends. Especially David. I’m so sorry… for the truth, and the lies, and this life. I’m writing to be stronger. I’m writing to be here.