Can you see it?

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…

Monster

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.

#DIPG

#KATHERINETHEBRAVE

#PLEASESHAREKATHERINESSTORY

The Sound of Silence

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.

#TheSoundOfSilence

#FakePeopleDontSurpriseMeAnymore #LoyalPeopleDo

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

“She’s only dead Jaime, calm down…”

“She’s only dead Jaime, calm down…”

In my dreams she is not dead. Every time, the same thing… she is lost. Taken from me, without my knowledge. It feels worse somehow… I guess it’s the same in a way. Her being taken from me without my consent. I mean, I didn’t approve of her dying like this. I fought for her life. But differently, it’s crushing to think that your baby is still out there, and missing. I long for her touch, and to hear her voice again. And sometimes I sit and have to remind myself that it’s real, and that she’s really gone. And as miniscule as it may seem, that realization, the finality of it, gives a small comfort to me that I didn’t realize was there. I don’t know what I would do if I didn’t know. If there was a chance to feel her again, and to see her smile as she grew up in “this” world. The word insanity comes to mind. All kinds of insane thoughts, and feelings. When I dream this way, which is every time I dream of her, I cry so much. I shake, and scream, and breakdown. I fall often to my knees and reach out for her, and she isn’t there, but it feels like she is. A blur. People moving, and she is somewhat there, standing still, staring at me, but I can’t reach her. Thinking she’s still alive but stolen from me in a dream is so hard to cope with. I woke up today crying, and had to remind myself that she was really dead. You heard that right, “Calm down Jaime, she’s dead… Breathe” I cried out, and David rubbed my back so I could sleep again. He mentioned it to me later, but I didn’t want to upset him so I didn’t talk about it. Little triggers. Why are my dreams worse than my already harsh existence… I don’t need anymore “realness” in my life. I’ve had enough real stuff to go around a lifetime. I’m sorry to those that have had to experience that realness, or are experiencing that now. Of course I am sorry for everyone who has lost a child period, but after experiencing this in many dreams, I’m crushed for those that don’t know if their child is dead or alive. Because I know. As hard as it is to admit, I know. A small blessing in my child’s death, and I’m sorry to have it. – #mommathebrave

#KatherineTheBrave #DIPG

Pitiful

It’s pretty sad and pathetic when you would be willing to go back to the moments that your child took their last breath. Just to feel them again, to kiss their beautiful face, and to feel their skin and body in your arms. To breathe them in, even if it was the death of them that you inhaled. I would even take that over this existence without her… I would take those excruciating moments just to feel her one more time. Pitiful.

(mic drop) Goodnight. 😔

Break me!

Yell at me. Call me illogical. Call me irrational. Tell me I’m wrong. Go ahead… Wave your hands, and scoff, and roll your eyes when I talk. Speak over me. Why not. Make rude comments, and little jokes at my expense, while the others laugh along with you. Ok…

Trust me, I of all people can handle it. Even for 4 hours straight… Alone.

But you see folks, there is something you don’t know about me… I have fought for an entire year for my child’s life. For 12 months, against all odds. While others decided her fate within hours, and turned their backs on her and her entire family. I have held my child in my hands for three days straight, and witnessed the life leave her body, alone inside, and I had no one. Sure, I had friends and family there, supporting me every step of the entire way. My husband, and other daughters. However, there is no way that you will not feel the deepest feelings of emptiness, pain, heartache and utter lonesomeness when you are in that position. Even in a crowded room, you are alone there. With no hope. So alone and still being strong.

My friends know me, and the old me would have had something else to show you… 🙂 Although, I won’t do that. I will stare at you, smile calmly, and I will speak softly. Now I carry a big stick folks. A strong need to do the right thing, for all the wrong things that were done to us. I didn’t ask for for this big stick, I was burdened with it. It’s all I have, and I will use it. For everyone that deserves it… Especially my family.

You can’t break me. Ever… Especially when I feel that I am right, and I’ve had so little control over so many things in my life. I have control over this, and I am so, so, so much stronger now then I ever was in my life. I get weak, but the fight is still there. I am right, and I believe in what I believe in.

Good luck breaking me… 🙂

Holidays

The worst comes out in some people during the holidays… It’s sad to watch and read. But… it’s like a train wreck, you have to watch, and every once in a while I find myself wanting to type, “You have NO idea what real struggle is like…” Or, “You care about a design on a cup?” Or, “The speed at which I drive upsets you that much?” LOL! Not sure how to make it now that I have real problems, surrounded by so many that think they do. I skim past the posts, the ranting and raving over things such as this. I unfollow people all damn day long. The holidays make people self-righteous, as if they are owed something. My dear friend is watching her son die right now, exactly how we watched our daughter die, that’s a real problem. That’s a real struggle. The person inconveniencing you in the grocery line is not. 😞 I don’t understand it, and I can’t stand it. Maybe it’s not the actual issue itself, we all get irritated. Maybe its that its splashed all over social media, and the words are subject to scrutiny. I go to find the posts or blogs from people that are really hurting, or living, appreciating, and loving the real world. The ones that really suffer, and fight. The ones that didn’t suffer, and fight with us. The ones that counsel, or try too. Or the ones that just hear us, and care. The ones that THINK before they dig deep into their real thoughts and pull out the ugly. The ones that appreciate this existence. This is my new “real world” of judgement. I’m also here deciphering your decisions, and judging in a different way. There’s a lot more thought process involved in my reaction or responses then their used to be. I have more pity and sorrow for people now. I sit back and stare silently at the words or letters I’m observing. In shock… But I keep it to myself. So, this way I’m less bitter, and can block out the BS, and sink into myself. I don’t have to think negatively about the people I love and care about. Those that are so removed that they don’t see the big picture. It’s better for everyone, and I should have done it years ago… Thank you to my daughters for teaching me how to be real to myself, to not care about being different, or keeping things acceptable, or being the perfect friend, and to be better than that… to be me.