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.
The entire dream was odd. I felt insecure, lost, confused, used, and I used, scared… This wasn’t me. It went on, and on. Doing what I was groomed to do. I don’t really remember much of it, houses, and streets, clean and crisp yards, newly mowed. They were perfect, and my house was a mess. The clutter was everywhere. This wasn’t me. I mostly remember the bad guy, a kid, a teenager… and a few of his friends. He wanted to hurt my kids. We didn’t let them into the house, and suddenly the house was full of people I know. They were there to comfort me, to be safe with me. The father of this kid, ran the place, and assured us all would be fine, he understood our fears, and was fixing him out there, he was good again. He wouldn’t do what he had intended to do, and what I knew he had done to someone outside of that house. He knew I knew… and when I tried to confront him for it, as he casually strolled through the house, his dad stopped me, and said he’s fine and why am I making waves. Now I was alone, and no one was on my side. He was fixed. I was crazy.
Later in the dream, we are swimming, and everyone seems to have moved on. I am with teenage girls, there are about 4 or 5 of them, friends of my daughters, and my daughters. I whisper to them to swim towards the end of the pool, just casually. I see the kid staring at us, and the others are oblivious, but I knew. I tell the girls to swim to the end, climb out, and then take off to the car… And they do, and I do, and we make it, but he meets up with us, and I get the girls in the car, and Tori’s driving. She’s trying to take off, but the guy holds her door open and, wait… it’s not her, it’s me… He wants me and he wants them to witness it. His large sized friend pushes my door shut on my leg, and holds it there. I’m the one they want. I’m the one he is trying to kill. He comes out of the house with a dust pan, that has the edge of the handle sharpened… and now all three of them are smiling.
Suddenly I wake up, I’m sweating and flipping out. My thoughts immediately are that I need to go back, I need to fix this error in judgment and fix this. I think, WHY DIDN’T I push harder on that door. Why didn’t I tell Tori to go with the door open, she was waiting for a command. Why did I turn around and waste time, I could have got the other guy why he was distracted and admiring the new flashy weapon. And slowly the thoughts turned… to a worse nightmare.
The next several hours were flash backs in my awakened mind. She used to sleep behind me, so peaceful and sleepy. She wasn’t there anymore. Would I freak out if she reached over, and hugged me suddenly. Probably. Would I stop it, no… I wouldn’t waste another moment ever, so many moments wasted. The last time she slept behind me was the worst, there was no comfort, and she was in my arms. I woke to her struggling to breath, the raspy breathes, the fever, the scared look in her face. I overslept… DAMNIT! One hour should have been enough, but it was 4. How could I do this to her, why didn’t I set an alarm. So many flashes, like a movie, but I was awake. The morphine we pumped her full of, the oils, the video recording of her suffering, did she know. Did she hate me for it. Did she agree, people needed to see this suffering. The faces, the tears, the clothes, the cleanup, the fog. The hospital bed, laying with her, my husband next to us. My other children, somewhere in the room. The nurses face. That face of pity. The sound of echoing voices through digital lines. Why didn’t I reach out and swat that phone away. I hate them for that. All of them. They couldn’t even give him this moment.
I need to go back. I need to fix this error in judgment, and fix it all… Why didn’t I do so many things. The thing we ignore all day long, as just a tool to clean up our trash, that useless tool, or thought, or process, and the unexpected result of ignoring those things, right in front of our faces, as we watch children die every day, and families suffer. That thing, which made my life a real nightmare, and will for many more to come. Cancer was my dust pan, and I was so fooled, and i could’t hide like many think they can. It caught us, and Katherine. We were ignorant, and it won.
In this photo Katherine had so much anxiety caused by the radiation she was still receiving. The steroids and Avastin didn’t help. Her body wasn’t hers anymore. She was very upset, it was hot, mom was stressed, and it was a long drive. She cried and wanted to be held for an impossibly long time. And I just wanted to get it over with. Everything was so wrong, and this photo shoot seemed like the right idea, and it was turning into a disaster. The sweet lady taking the photos tried so hard to make her smile show through the camera. We were struggling. Big time. But here… she was distracted. She made us all stop. She saw a peacock casually strolling. She locked eyes on it and stayed that way for an oddly long time. Soaking it in. She always saw the beauty in things so calmly. She never ran towards or shared what she was thinking. She just kept it all to herself. She was probably enjoying its beauty, and recognized its freedom, wishing it was her, and that she could leave this new constrained life. Little did she know that she was yet to spread her feathers and be beautiful and amazing and teach us all so much. She was magnificent and more amazing than any peacock she could ever admire from afar. And I miss her so much. 😔💛🎗
I’m so sorry Katherine. I wish I could have done more. I wish I could have saved you. You deserved a real fight. You deserved a chance that you were not given. And for that I will never forget, I will fight, and I will regret this loss for the rest of my life.
One of the biggest fears as I mourn my daughter’s death, besides the fact that I will never be able to wrap my arms around her, or take her tiny, soft, and precious hands in mine, is what others think of my healing process after her death. It’s true… This is my life: Get out of bed. Not cry noticeably. Smile and feign happiness for my other children. Focus on my job, because you know… that pays the bills. Try not to share her story with every passing person I meet, unsolicited. Take any and every opportunity at the last minute to get out, and forget this existence, then rush back home because of anxiety, and veg. Try to get through the day, to go to bed, and get up the next day, and repeat it again. That’s what I can do, and anything that requires more than that, is a crap shoot. And let’s say, on the off chance that you are ever on the receiving end of that crap shoot, that you’ve wandered away from our friendship, or stepped aside because you “just can’t”, or feel I’m unapproachable, then I am regretful that you gave up. It’s not you, it truly is me, but if I told you that I was sorry, I am being untruthful. Because you can’t be sorry for things you cannot control. I am technically sorry, but not for the reasons you think. I’m sorry that I can’t be the old me, that’s all a foggy blur now. I’m sorry that I can’t be a new me, post child loss. I’m sorry that I can’t be any me that would satisfy what you’d expect of me. I can’t be the me that was, or the me that fought for my daughter’s life, or the me directly after she died, or the me from even on hour ago. It’s like my emotions are playing hopscotch with my thoughts, and I just can’t get my rock into the “friend” square… So yes, I’m sorry for that, and that only. Not because of my mourning process, but because your expectations of my mourning process are lost on what we once were as friends. And some people have failed to see their reservations towards me in that same manner that I have given towards them, so there’s that to ponder… But I’d like to think that’s I’ve been through enough to deserve the effort, but maybe others would disagree. Either way, I’ve lost everyone, in some way or another. Some have stayed, and pushed through with me, and understand this journey, or want to, or pretend to really well just for me, and that works too. And hopefully they will remain for years to come, because I’m a year out, and I feel like she just died yesterday, so… it’s going to be a while.
So, for those of you that can hang with me during the impassive yet emotional evolution I’m currently struggling through, I can’t promise you shit, but I can promise to try, and that’s going to have to be enough. And besides, I bring good dip to the parties, so… it might be wise to keep inviting me, becuase one day I might just show up with it! 🙂
Love and Kisses, See You Next Time…
I sit here with my hands in my lap and no costume to decorate. No sale to try and catch. No frustration over not finding an item. Or rush to celebrate. Nothing. I’ve been cut off at the knees, as my child was ripped from us, with only a whisper of her name still literally coming out of my mouth. I could almost touch her… and hear her breathe still. But she’s gone… forever.
That silly Child. Always changing the names of her costumes to fit what she actually wanted. Adding princess, or fairy, or good, to adjust its meaning to her liking. Making faces at each and every option we looked at. In the end, her tiny happy bones, her never ending smile, and perfect Halloween 🎃 face always satisfied. Do we buy the makeup. Do we color the hair. Smiles. Planning the annual party. Decorations. A 10 foot ghost. Candelabras galore. We had one every year…
I got seven years. Be happy you say… She would want that. So would they. Seven long years… Well I won’t, and you should know better. Not today, or ever. I’ll take that seven years a million times, but I won’t be comforted in those seven years, or the time that I had that is gone. And you wouldn’t either… My chance with her for years to come will always be stolen and it will ruin everything. Yes she wouldn’t want me to suffer, but what she would want more wasn’t to die, or watch me suffer today watching those who have most certainly lost the point of this holiday being about their children, and their joy… Shaking my head here, and in tears. No, she would definitely not have wanted that.
Yep, there is no craziness for us, and no care to celebrate. Those decorations haven’t been out for two of these holidays now, and she’s been gone for just over one. Just frustration and words almost said to her and to everyone else here. We can’t speak, we’re still stunned. We don’t rush to find items, we hide to avoid the thoughts of her in every happy child we see. Your children. We don’t plan out the events that lay ahead, we make excuses as to why we can’t go without her to the festivities that are planned. Your events.
Everything stopped for us. And we were left standing in the smoky Halloween air. Four people, in the fog. You can just make out our outline, if you try. Hand in hand… Just an empty space next to us, with a silhouette of a little girl. Age seven. And years of loss weighing down on her. The weight that shows on us too. Heavy. As others walk by, whispering words of encouragement to us… but we don’t move, we just stare forward and fight to not fall apart. To stay up. To not let go. To not change the presence we still feel of her. Here. Forever…
That is our Halloween… And thank you #DIPG.
#KatherineTheBrave 👻 🎃
Dirty Paws would have been a song that Katherine and I would have talked about and deciphered. We would have whittled it down to reasons why the animals were fighting, the results of that, and how it could have been avoided. It would have made us laugh, and get serious, and then back to laughing. Tori and Alissa would have joined us. Adding their opinions. She loved context and would have imagined a happy ending for both sides. Just like we would have all wished for for her. I miss her. I want to bury my head today. I’m tired. So tired.
She haunts every space, and we crave it… It hurts us in every possible way, yet we feed off of it. Like she’s tiptoeing and peeking around each thought, and we have thoughts to encourage her presence. With the truth and travesty of her final year following right behind her, ready to expose us as well. The joy of her, never alone without the heartache.
You see, I see her photo as I pass her shelf. My child’s memory… now adorning a shelf of trinkets. I never envisioned this is how her life would end. She would help me decorate that shelf with pictures and flowers once. Perfect organizations of each framed photo facing forward, in unison. Could you imagine? Your child… No, it’s not enough for me… this shelf. My body and soul can’t process the meaning of her new presence against that wall, in our dining room. My child was alive. She stared into my eyes and spoke every emotion within them. I have visions of those times. Before I was me, here… my cheeks are hot. My head is foggy. My eyes are watering. I can’t make this better. I’ve lost my chance.
So right about now, I’m wondering how long we can live this way. Pretending to be like everyone else. Without the child we once loved, and with a new shelf (existence) we aren’t sure how to be a part of. She was our world, and we cherished her. We nourished her, and we grew with her. And then we gave her poison to try and save her. And worse yet, we gave her promises and lies to save ourselves.
“Anything to make you smile. You were the ever living ghost of what once was. No one is ever going to love you more than I do…”
We took a knee… when we found out our daughter would die. We took a knee when we were hugging her because she couldn’t get up to hug us anymore, or it hurt to lift her arms. We went down on our knees when we had to clean up the mess from spilled food and drinks when she couldn’t hold things anymore. We took a knee still holding her up on the potty to help her keep her dignity at 7 years old with a terminal cancer. We took a knee when we were filling her tubie with more oils to stop the pain from her organs slowly failing, one by one. We took a knee when she died, to hug her and to say goodbye.
Taking a knee is the least of our problems.
If as many people were to see childhood cancer as passionately unacceptable, and as socially irresponsible, as they see protesting during a football game, Katherine would have made it. She definitely would have made it. She’d be here today. Smiling. Asking us what’s all the fuss about.
I’m not telling you what my opinion is. Because it doesn’t matter. None of it matters when you’re in our reality. I laughed a lot today at the riduculousness of it all. I hope you never experience this numbness we live with everyday. What we experienced as a family makes you bitter and angry towards the backlash of these “little things”. No, the real stuff isn’t in the headlines sadly. That real stuff is what truly brings you to your knees. 😔🎗
#KatherineTheBrave #EndDIPG #MoreThan4
What a wonderful time meeting such strong families going through the worst fight ever. Thank you for introducing yourselves to us, because I’m horrible at that, as you could tell. I am so touched and hope to see you again.
Thank you Audra and Justin and all of your foundation supporters for holding us up when we couldn’t hold ourselves up after this horrible diagnosis. For giving our hands and minds tasks to focus on, like thriving, when our one track minds could not look past the survival rate. For wrapping your arms around us when we only had enough strength to hold the one we were fighting for. And for soothing our hearts when our hearts were beyond broken as our lows outweighed our highs. We love you both, and you amaze us every year.
There were three things the oncology department told us when Katherine was diagnosed.
1: Your child has a cancer called DIPG. It’s a brain stem glioma. We will not operate.
2: Your child will die. Take her home. Make memories. Now.
3: Call the McKenna Claire Foundation and MaxLove for Support. They can help you. They will help you.
And they did. To the end. And still do.
We will never forget that day for many reasons. And we will never forget your support.
Loves and Kisses. See you next time.
The Kings — with Katherine King.