Happy birthday to my brother. I miss you. I miss you today as much as I missed you when you were alive. The you we knew you deserved to be. The you that I could never really put into words properly in an attempt to awaken that “you” again. A happy you. I wish life had dealt you a better hand. I wish your childhood had been kinder. I wish your mind would have slowed down and let your breathe. I wish that you had the ability to comprehend how much more you deserved in your relationships with those whom loved you and with those that you loved. Even those that didn’t deserve it. I wish that I had been more patient with you. Mostly I wish that you are at peace. I can only assume that you are because what better peace is there than death. A freedom from what burdens you. And if you were right, than you are in a heaven that is one thousand times better than anything that I believe in or anything that this world has to offer. And I wish that for you. https://www.instagram.com/p/CQSjSI4JKxf/?utm_medium=tumblr

I woke up yesterday and had no idea it would be the absolute worst day of my life, and it started by me falling asleep. Granted, I hadn’t slept in days. A year... But last night, I fell asleep so hard and was oblivious to what was happening right beside me. In my arms. I woke up to my child trying her hardest to turn over and signal to me that she was suffering. She couldn’t move or speak. Her eyes were wide. Screaming. She was terrified. Mom… She was gasping for air and red faced but still stone white. Her lips were trembling. I remember guiltily being grateful she didn’t die when i was asleep and then the chaos began… I am so sorry! I’m so sorry! Oh my god, I am so sorry Katie baby! I knew touching her was painful but I gently held her and patted her upper shoulders. Apologizing. I screamed for the hospice nurse. He, like many we worked with, had ever watched a child die and was as scared as we were. He was not hiding his fear. That terrified me more. I asked for morphine. Her cannabis wasn’t working anymore. He said she has had her max. I said give her more. He gave me a look. I said call your boss and give me the phone. He gave me another look. I said call your fucking boss. Now. He walked out. Walked back in with a syringe. And I dosed her. I realize now that I subconsciously knew it would be the last time we ever saw her beautiful hazel eyes and smile. My instinct was clear as mud. Stop the pain. I essentially put her down. So that she wouldn’t suffer, anymore. On her last day she was at peace and like a beautiful statue of her previous self. I still struggle with that decision. As obvious as it was to make, it will never settle a mother’s guilt. https://www.instagram.com/p/CQSjL1nJa0O/?utm_medium=tumblr

What memories I do have, have come back slowly and consistently after 7 years of mental suffering. I write them from the bottom of my deepest most intimate thoughts. I don’t write everything, because it’s not healthy for me or for others. I usually write, and edit, and write the same post multiple times, and then I feel an immediate release. It’s not a pleasant feeling, like it’s off my chest now, it’s more of just a closer to normal feeling which allows me to be coherent. Less of a mess… I read the responses. All of them. Sometimes after a more in-depth comment I go back and read it again. Then I read the comment again, as well. I can do this 20 to 30 times a post. Just to feel it again, and to feel what those responding are feeling as well. To make it stick. To not not feel it. So that it stays with me. So that I feel you all. It’s a wonder I’m not a raging alcoh… 🙋🏻‍♀️💛🤦🏻‍♀️ #onlyonweekends #lol #thankyoufriends https://www.instagram.com/p/CQSjG7OJmvR/?utm_medium=tumblr

We are being released today. Not sure why because I see the other children and their families moving about with their daily routines in the Onc unit. They look like familiar faces speaking to more familiar faces. No urgency to leave. With hope. Moms with my fearful face staying in one place. We are givin an exit interview. What to do when a fever comes on. It’s not as easy to manage anymore. Pay attention to signs of seizure, and rashes can be deadly. Listen for breathing, reminds me of when she was born. But this time it’s not just in my head. If she is dying, don’t call 911 or the hospital. We will just refer you on. It’s dawning on me that it’s not just words from a tired Pediatric Oncologist. There really are no options and no fight. We are being sent home to wait for her to die. I know this now, because I’ve just signed a Hospice form for my 6 year old daughter, and the Hospice director will call me this evening to prepare for her care while passing. https://www.instagram.com/p/CQSjBu7J0w8/?utm_medium=tumblr

Right now we are sitting down with the oncologist but aren’t aware of what she is. We hope she’s here to save our child’s life, but she won’t be able to bring us any comfort. She has shut Katie’s room door, because we are meeting in the entryway of the room. I think, “Is there no better place to talk about starting our fight for her life?” She hands us a sticky note with the words, “brain stem glioma” written on it. She has a scan of Katie’s skull and brain and she’s showing us where this “tumor” is at. It’s actually millions of tumors but that’s too hard to explain right now, so she’s sticking to the basics. Your child has a tumor. Radiation starts Monday. Steroids start today. None of this will save her. (I’m floating, staring down) It will just give her more time with you. For you. She is terminal. You have 7 months max. (I’m floating higher, and can almost not hear these words) There are trials, but they may escalate the process and will be painful. It’s all going to be painful. (Everything is black. No faces. An abyss of words that sound a mile away). Her recommendation, “Go home and make memories. Now…” (I’m completely frozen) I think to myself, “I get it now… Why waste a private room for this meeting. This place is as good as any.” Happy birthday. To me. https://www.instagram.com/p/CQSi5J-JIPO/?utm_medium=tumblr

It’s after 12 AM, my birthday, and I’ve just been told Katherine has a possible mass on her brain stem. I’m exhausted and confused. I ask if it’s water on the brain, and if they could get it out. The ER Dr. stared with a disgusted look. He blurted, “Well No! It’s a brain tumor. (blah blah blah blah, I heard nothing else for a while, but…) We’re moving you both to PICU.” I’ll never forget the look on his assistants face. Pure pity. She knew… They left me there. Alone. To cry on her bed as she slept. It felt like decades. I was sent up and they tried to settle me in. “Is there anyone that you can call?” I refused. She sent another nurse. She asked me. I said no. Then two more came in together and stood on each side of me. “Mrs. King, you should call someone,” as she held a phone handset towards me, off the hook… “I think it’s a good idea that you call someone who can be here with you.” I couldn’t think. I couldn’t understand or process this. I couldn’t breathe. I called my husband… https://www.instagram.com/p/CQSiyplJ91b/?utm_medium=tumblr

It was right about now that the ER doctor was going to send us home. He assured us that he reviewed her scans and all seemed fine. After walking out with him, the ER assistant snuck back into our room alone and she asked Katie to walk in a straight line. After Katie walked into a wall, that she didn’t see, the assistant requested a call into Neuro to review the scans. She didn’t agree with the ER Dr’s assessments, or decision, to send us home… The fear was setting in. https://www.instagram.com/p/CQSifxyJVqj/?utm_medium=tumblr

It was around this time in 2015 that I took my youngest into the ER because she was not feeling well. Still… https://www.instagram.com/p/CQSiKTaJoIu/?utm_medium=tumblr

Tonight I sent over some photos and verbiage to Glenview’s PTA for Katherine’s 6th grade graduation memorial. They want to honor her posthumously, which is a tremendous honor for our family. Because of that I was remembering the anniversary of her terminal cancer diagnosis, which is fast approaching. The pictures remind me of the throbbing in my head for weeks after that night. She was diagnosed on my birthday which I’ll never get over for us both. The anniversary of her final breath on this earth is also approaching here. And that 6th grade graduation. It’s just all around the same time, and so much to think about and struggle though these next few weeks. Wondering how that’s going to play out. I’m hoping I can keep it together for her. Sweet Katie Baby. https://www.instagram.com/p/COuMPNJp482/?igshid=uqss9jwu5x1d

This is Katherine's older sister saying goodbye. The little sister she called a twerp and brat before diagnosis is dying and Alissa is gripping the last part of her that she can touch without causing pain, along with Tori who is on her other side hugging her. My two older daughters were desperately trying to process that this was the final stages of Katherine's life. Their baby sister. That sound is not a machine. That is my daughters body leaving us and giving up. This child wasn't even given a glimmer of hope in her diagnosis. And sadly that's how this works. Cancer does not discriminate based on race, gender affiliation, sexual orientation, or religion. It doesn't care if you like our president or don't. It does not care if you've had an abortion, or refuse to, or if you are a US citizen, immigrant, have a visa, or are a refugee. It does not stop to consider if you're 7, 17, or 77. It kills anything, and everyone in its path. Yet, it gets nothing comparable in funding that it deserves and our kids get even less. This is why we fight. This is why we're graphic, and this is why I'm transparent. Like it or not... Thank you to those that have stuck it out with us. We are honored to have you fight along side us! #PleaseShareKatherinesStory #KatherineTheBrave #LovesAndKisses #RainbowSocks #DIPG #KatherineDeservedMoreThanFour #MoreThanFour https://www.instagram.com/p/BP4CsJ-g1ft/?igshid=17maodbuvk1nx

I know of a lot of people whom I could give this label too. They stuck by us and helped when my daughter was ill and passed. Close to me and from afar. There are too many to mention. It’s one of my biggest guilts, as if I needed another one to add to the list. I’ll never be able to repay them. I was surrounded by grief and fear constantly, so most of them I wasn’t even aware of. The rest, too uncomfort to reach out. Forgive me. Hopefully you know that as a mother of loss I do recognize the enormity of your gift to us and to Katie. I believe you are this quote and I’m sorry but grateful for you. Thank you. 💛🎗 https://www.instagram.com/p/COA1ItPpOSs/?igshid=ta1qmd0nfain

As it gets closer I struggle...

“Mothers day isn’t so hard. Because every day is hard with this loss.

Whether you’ve lost a mother figure, or have lost a precious pregnancy, baby or child you’ve raised, blood or not, every day that you wake up without that brilliant being in your life is hard. This day does not change that heartache.

This day just pushes that loss to the forefront a little more abruptly. Reminds you to appreciate what you have left. Encourages those who may not normally reach out to try. And makes you suffer a little bit more then you already have each day by watching those that have whole families not appreciate what they have. Thank you so much to those that do. It’s helpful.

I don’t want gifts. I want my family next to me. All of them. The missing one too. I’ve always been that way though. It hasn’t really changed. But even with my non-codependency to gifts and attention on Mother’s Day, once you spend one Mother’s Day carrying your dying child around who can’t walk, and watching her wilt away slowly into the night, and knowing any day that this brilliant being could die, they’re never the same. That was a real bad Mother’s Day. This is nothing. It’s like white noise. Deafening. All of it.

At least she has the comfort of her peace on this Mother’s Day. She will suffer no more. We do. But at least she won’t. She suffered enough for all of us. Holidays didn’t give her reprieve. She has one finally. That’s my Mother’s Day present. It’s all I will ever need. Ever. Thank you.

Mothers Day, May 8th, 2016”

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