Monthly Archives: August 2016

Ask me?

#PleaseShareOurDIPGStory #PleaseShareKatherinesStory #PleaseAskYourFriendsToShare
Ask me about the fact that some cancers are still incurable? Ask me about watching my child succumb, in my arms, to a cancer with almost zero government funding, or concern? Ask me what its like to wake up each day knowing that something more could have been done? Ask me why people still are not aware of this cancer? Ask me what it’s like to hear that this cancer is referred to as rare, when children are being diagnosed all around us. Ask me why I fight? Ask me why you should care?
Ask me about #DIPG?
#KatherineTheBrave #LovesAndKisses #MoreThanFour #MichaelMosierFoundation #DefeatDIPG

War

I don’t think ANYONE can understand the complete and utter disaster my mind is in as I even begin to contemplate going through Katherine’s belongings.
“I’m on a craft of some sort, floating, and sick to my stomach, headed to a shore, my goal. I have to begin, get off this boat, about 1 mile before I reach my goal, the shore. With no assistance, no preparation for what’s to come. No idea which direction I’m going. I see an end point. Maybe… No idea what I’m doing. I wade through the water and floating debris of my daughters life, for a mile or more. Carrying lbs. and lbs. of cargo, stress, and pain, on my back. In my mind. Fear is gripping me. Should I turn back. Maybe tomorrow. Praying I don’t let the water and anxiety overtake me, so that I am lost forever. Avoiding the seriously dangerous thoughts coming at me from all directions. Shots of memories, regret, and missed moments in time. These “things” are coming at me, and decisions must be made. Box. Trash. Give away. Stare. Cry. Breathe. Cry. Hate. Breathe. I can’t breathe. I can’t think. I have to get through this… I need to focus. I have to get to shore. I have to save myself, before the process of removing my daughter from this corner of the shore takes over and expands into every area of my life, similar to how this cancer spread through her mind. Freely. Almost as if it received a warm welcome. I can’t let that happen. But I don’t want to do this. I want to give up, even though I know I already have.”
A glimpse. The first two pictures are where my daughter was with me. Strong. Alive. Fighting. The second picture is how my daughters life exists now thanks to DIPG. A pile of memories. To be gone through. To be sorted. Overflowing and feared. Cancerous. This is where we are drowning mentally every singe time we gather the strength to even contemplate going through her life. We’re at war with it. #LessThanFour did not just kill Katherine, it’s killing us. Slowly. 
#LovesAndKisses

#KatherineTheBrave

#DIPG

#PleaseShareKatherinesStory

#KatherineDeservedMoreThanFour

First Day Of 2nd Grade

Today Katherine should be starting 2nd grade. I should have taken the morning off and drove her to school. Walked her in. Excited. Taking lots of photos of her curled hair and big grins. Hugs and assurances that she would be fine today!
Instead I’m looking at Facebook memories of my child who isn’t here anymore, and noticing her half smile from all the way back in preschool where I was unaware of the danger lurking within our child’s mind. What did I miss. Could I have done more. So unaware. So oblivious. 
Today’s Facebook stroll is another reminder of why we ALL need to do more for our children who are dying every day and given no funding for research by our government. Not one of my friends can say they don’t know the truth now. 
What are we doing to change this!? Ask yourselves… I ask myself this every damn day. We all should. 
#FeelingSomethingMissing #APieceOfMeIsGone #KatherineTheBrave #DIPG #LovesAndKisses #PleaseShareKatherinesStory

Our Child Was Out Home

Katherine should be starting school on Monday. What would have been 2nd grade for our baby. A new teacher to smile at. New books to open and take in. New clothes to wear and be proud of. New friends to invite to sleepovers. New beginnings.
Katherine died on June 6th of an incurable brain cancer called #DIPG. Children diagnosed with this cancer live on average from 5 weeks to 9 months. Katherine fought her hardest for 12 long months. There is no cure and no child has ever survived this cancer. Those who live longer are grasping for more time, living in fear of every new MRI or symptom thats noticed. They know the statistics. We did too. Our government gives practically pennies to research a cure for this cancer. We have to fundraiser for drugs that make what little is left of their life, peaceful. They left Katherine to die. They left us to watch her die. The numbers of diagnosis’ are increasing. Yet there is still no cause for alarm. No ones coming to ask for more details about our lives. About our dead child. No ones investigating and adding details to some database labeled DIPG, investigating clusters, and increasing patterns.
Maybe it’s because they don’t feel my loss. They won’t be there to watch me fall apart and suffer in my own mind. They don’t know that my thoughts are toxic this evening. Angry. Bitter. Maybe that’s best… I’m not sure I could avoid physically expressing it to them…
I’ll remain here. Struggling to be. Anything. Missing my baby. Watching the kids go to school. Laughing. Living. Being. Missing her. I miss you baby. I am so sorry. I’m so damn sorry. 
Our child was our home.

She kept this space alive with her energy. 

She inspired us to live in the moment, right here. 

She allowed us to love her. 

She completed what was us. 

It was meant to be, this home. 

She made the sounds that filled our quiet places. 

She was the creator of our cool breezes and sunshine. 

That child is gone. 

Our child is no longer here. 

Our home is gone. 

We struggle to live every moment. 

Our home brings comfort, no more. 

We fear the quiet places and cool breezes it once brought. 

We hide from the signs of what was. 

Now we struggle to be, anything. 

Our home was our child. 
#KatherineTheBrave

#LovesAndKisses

Precious Little Things

It’s the little things that crush a bereaved parent. After all that we have been through, you could pull a bull dozer through my house and I would find a way to keep my other kids spirits up, still serve dinner, and I’d have ways to solve the issue (a bulldozer in my living room) before it even turns off its engines. Nothing can shock or hurt me anymore. Sadly, nothing can penetrate me, either… Not love, support, care. No, those big things don’t matter, and are small change compared to the little things. Oh, those precious little things. Someone casually mentioning that they need to start Christmas shopping. Finding a juice box in the back of the cabinet. Driving by your child’s favorite park. A mention of, “How are you doing?”. A special picture someone is showing you. Those precious innocent little things can ruin everything. They force out all of these emotions that I’m trying to bottle up for another time. For what time I don’t know. It’s not like I don’t want them to come out,it’s just that I’m scared to death of them, so I fight them subconsciously. I hide behind activities, work, food, alcohol, other “things”… I’m finding myself pulling away from things. Things I had planned to “be” after Katherine. Activism, advocacy, family, friends, the things that remind me of her, to keep her memory alive. I avoid them, and it’s adding to my fear…
Those “little” things today caused me to finally make a call to a Dr. “Hi Mrs. King, this is Rachel from Mental Health, I can help you schedule your appointment.” (shock) “No, no… you must be mistaken. Ha! I don’t need mental health, I just need a Dr. to give me something to calm me down when I’m running behind or stressed, and then something “little” comes to mind, and I lose it. You see these small triggers get me, so I just need something to mellow me out. I get shaky, and scared, and can’t breathe… I’m not having mental issues, I just need something to calm me down…” “Mrs. King, you need to talk to someone, to address those “little” things, and then we can discuss something that will help calm you down. You have every right to feel the way you do, considering your situation, so I think it would be best…” (shock) “Well, ok… Then pick someone that can speak sob, and cry… because once I start talking, that’s what they’re going to get…” “We have plenty of those here… See you tomorrow at 1” (click – shock)
I had a vision of how I would be after Katherine died. I was so fierce in my mind during her decline. I was steadfast and on a roll. I was thorough, and things got done. I needed her comfortable, and happy, and my whole life was that child. That side of me is gone. I am slow to move in every aspect of my life right now. Everything I do is by force. I’m not motivated to be good, or thorough at anything. I am not depressed, so to speak. I don’t hate me, or feel down all the time. But I’m not “me”… I feel as if I’m a different person looking in at my life. Like a drug addict recovering, looking back after your mind is functioning normal again, and clear, and saying, “What happened…” And not knowing how to move forward. Like a marionette who needs guidance. It’s almost as if the evening Katherine passed, as I stood outside of my body, watching everything, and everyone, in the room, only a piece of who I was came back to me. Some of me is still there, lost… with her. My “little” thing… Katherine. I miss you baby. I love you so much. I’m so sorry…
#KatherineTheBrave

#DIPG

#LovesAndKisses

Tori graduated!

#KatherineTheBrave’s oldest sister Tori.
“Finally received Tori’s graduation picture. I’m so proud of you Tori. Funny story… Tori walks up to the lady handing her the diploma, and the lady says, “We’re not really supposed to talk to you guys, but I really like your shoes…” As you can see, Tori’s gushing. Good job mom Megan. :)”
#DIPG

#SuperSib

We are drowning

8 weeks, and one day… And this is getting worse. It’s like being in a vice clip and a bandsaws coming slowly towards your head. I know that with every additional day that she’s gone, its a day closer to forgetting something small or unique about her. It’s petrifying and I’m drowning. We had actually believed that life moved so very fast when she was dying for 12 months. We were wrong… It moves much faster when you are scared of times forgetfulness. #KatherineTheBrave #DIPG #LovesAndKisses #KatherineTheLegend