She lived a thousand years before I even lived 40…
This picture has sat in my phone for weeks. I struggled to post it. I hurts from the depths of my unforgiving soul every time I see it. Nothing can prepare a family to handle watching this type of suffering from their child. Nothing can save my beaten and broken heart because of her pain. I didn’t realize then that the me I was would go with her. Gone for good.
Nothing, forever, a thousand times, will ever makeup for this exhausting and incomplete leftover life we are trying to live. Faking happiness with every turn of events. It’s like the moment she died someone dropped me a million miles away and I’m constantly trying to walk back to my old life. In search of that happiness I didn’t appreciate or cherish. Trying new things with old traditions. Hoping it will remind me of a time when… It never works… I remember by morning.
Maybe that’s it. It will never get better, and I’ll be mapping my way back for life. The thought fills me with dread. The selfish thoughts. Self loathing has become comforting. I don’t want to be here or like that. I want to have some peace again. Even if it’s just for a moment. To breath. With my healthy girls. Free again.
I’m not strong. I need to wake up. I should stop grieving. I have to realize I’m not the only one suffering the loss of a child. I must move on.
Here’s a taste of what us cancer families get from followers every damn day. This person was just bold enough to put it in a public post and didn’t hide behind a FB message and then quickly lock their FB. page down, or pretend it came from some sort of religious belief, or even use an experience to make it sound plausible. Sad… It’s sad for all of us.
Hey people, I post to get my frustrations out, and to help other families feel as if they are not alone. To spread awareness for my daughters rare cancer and help with all of the above. Sometimes these crappy comments are easy to ignore because the post wasn’t emotional for me specifically. Not this time… If this keeps up, as it has been more frequent the further from her death we get, then I’m out.
I wonder if she just wanted to swim away and forget it all? I know I did. And do…
I had a rough night(day/month/year/life…) last night. Nightmares. Night terrors. I feel things that aren’t real. Physically, visually, and emotionally ina blur. And they scare me… Nothing feels good about it. 2.5 years of this. Nothing positive or happy in my dreams.
I had a sudden realization today. Like every day. She’s gone. Forever. I stopped and gasped. I almost grabbed a wall. I will know nothing more of her than what I know now. I will learn nothing more of her than I have already learned.
She’s gone. Just gone and for nothing. The trauma is unforgivable and tragic. And there always… Hiding. Waiting to escape at every turn of the page or change in the wind.
Every day, a reminder of my loss and hers.
Someone told me long ago, there’s a calm before the storm.
I know, it’s been coming for some time…
I carried her in my belly, then in my arms, then hardly at all. Within 12 months I was carrying her in my arms again, to her last breath. I now carry her on my neck… I miss you Katie Baby. I wish I could have fixed this.
Do you see it? This is four months before diagnosis… Do you see it in her eyes? I didn’t. She was already dying here. Before we even had a chance to begin a fight. Her tiny immune system and brain already giving up, and being taken over. Devastating…
This was the day I taught her how to string dandelions into a necklace and headbands. There was so much more to teach… She wanted to know everything her sisters knew. Instead I ended up teaching her how to handle the pain of injections from hundreds of needles, to hold her head still for radiation and MRI’s that took hours, and to stay still while I suctioned her throat so it didn’t hurt so badly. For us both… it hurt so much.
Do you see it now? I do… Like a glaring bright red prong spiraling towards my head. I wish everybody had this vision, way before it’s too late. And time is lost. Like our time. So much time was lost…
Love lost is like a cancer that grows in and around you. It slowly seeps into every part of your body and soul, until it takes over the vital areas of your being, and eventually ends all rational existence. The life that you were so familiar and comfortable with, your well being, is gone. Your new life is a tragedy. A badly written novel, by a mad man.
We lived this… I know this pain.
Today… How quickly she could be wiped out, the slate cleaned, the name erased. I have proof that she was here though. The ache and longing in my heart, like a cancer, is all the proof I need. The pictures are my justification for my sadness to you. So that people can attempt to feel for themselves what I am feeling. I want them too. I want her to take over their existence. To seep into their souls and pull at their heart strings until it hurts so bad that they want to do something about it too.
I’m warning you though… Love loss is like a cancer. Eventually you have nothing left but the strength to cry. Just like Katherine did. And so I am…
Photo circa 2011. Katherine was almost two years old. Her favorite things were her sisters, ice cream, and her favorite cartoon Micky Mouse Club House. She was scared of the dark, and loud noises. A monster was lingering in her though. A monster much more dangerous then anything she could have found in the dark.
It was easier then I thought to shred those several dozen years of Christmas memories. Photos, cards, letters, promises… I caught myself smiling through the entire process. It was a strange feeling. So relieving. So many cards from so many different friends of the past. I thought for sure I would find a few that I would want to keep, but no. They are all gone now, and it feels good not to drag them through another year of the Christmas take down. I don’t ever want to see any of it anymore, actually. Not the decorations, or the ornaments, the lights. Nothing. They are packed tight and ready for a long, long wait. Maybe after I’m gone.
This year we received maybe 5 cards. Not even a quarter of the usual. I admit it made me sad. Made me think that possibly all of those cards, from all of those years, were just obligatory to my sent card. What a waste… Well, it wasn’t that way for me. It meant something. And it’s now a stark reminder of the realities of the real Christmas spirit, and what it means. I couldn’t gather the strength to send them, or do much this year, but I was so looking forward to them. More then I thought I was, apparently. But here I am, with thoughts of how quickly people move on when you are not the you they want you to be. When you remind them of the pain that they want to avoid. The pain that they can’t avoid with the thoughts of you. The pain that you yourself will never be able to avoid again.
I just don’t have that kind of Christmas spirit anymore, and I’m actually not that sad to see that side of it go. And this year proved why. It’s not real. At least not how I thought it was. And it’s just not me anymore. That’s probably a good thing. And they are not the them that I want them to be anymore either, I guess. So we both win in a way… or lose. I can’t tell anymore which is which because I’ve lost so much already.
You know it’s a sad world when carpool karaoke with a healthy child and father, or a wife and husband, will get more likes and shares then the truth. 9.6M views… But… A daughter dying in her mother and fathers arms. Our daughter. A few thousand.
Say what you will. Judge the opinion. It’s all for not… I truly can’t sympathize. I held Katherine as she breathed her last raspy breath. Along with many other families just like ours, our dreams for our happy life died with our dead children. We didn’t get to plan a song and dance for the event. Our preparation was for the right thing to say to our dying child to stem the regret after their death. I didn’t pick a wardrobe and smile and giggle with my family and thank my bank account because I made millions fall into my social media web.
What we went through is bigger then a song and dance. It’s bigger then wigs and hand motions and lip syncing. It’s bigger then all of us. And it’s sad that “we” don’t realize that. We need to get it together. Before it’s that beautiful child singing and dancing with her Daddy in a car. Just as Katherine did with David on the way to school. Every day… Just like it was for us. Like it was her. Before it’s too late. Before it’s you.
Katherine The Brave