Monthly Archives: January 2017

Goodbye

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

Blocked

Warning: If you message me and tell me how very sorry you are that my precious 7 year old daughter was taken by god, but that it was his plan, he giveth and taketh away, and either I should rejoice, or not lose faith, or both, I will block you. I don’t care if you are right, if this is true, or false. All I do know is that it’s too soon, very inappropriate, and unkind of you. Your agenda will not be met on my daughters page. How could any parent even fathom that this was the plan and they need to accept it. Especially this soon in mourning. Sorry… I don’t need any excuses for this person, or messages that they meant well. Adults should know better and if they don’t already then for my mental health I must block them. Ugh… sorry for the rant. I woke up to that. I really didn’t need it. Am I wrong? #katherinethebrave #dipg

Nightmares

Sometimes waking up suddenly while sobbing after a lack of sleep and horrible nightmares that have anything and everything to do with your dead child really freaking sucks… please forgive me ahead of time for my vapid responses to life today. I will not be able to control them. Take it up with my emotions and mind. Be prepared for them to go from anger and then to tears at the drop of a hat. Just warning you. You are doing this at your own risk.
“Mommy, she’s my baby…” Her immediate response to acknowledging that this was her baby was to hug her and cherish her. As we do with our children. Photo circa Nov 2010. Katherine was 1.5 years of age. Ready to take on the world. Yet clueless to her fate. We all were. 
#katherinethebrave

#dipg

#lovesandkisses

#rainbowsocks

Calming Grace

Katherine’s birthday is coming up and my mind is racing… I can’t write this without tears. I am so lonely. If I go to the gym, I think of how much she loved the play area. If it bake, I think of how much she loved to help and lick the beaters. If I drive, I think of how we would play her songs so that she could sing along the way. I lay in bed, and want to feel her arm along my side squeezing me into her. So much of her is still here, but I can’t find it in me to feel her. I have this instinct to get past the first year. If I can just get past the first year it will get better… But then I will be even further from feeling her, and the anxiety sets in. I struggle with that, moving on to heal the pain, yet not moving to far beyond my life with Katherine. I want to forget, but I refuse to forget, all at the same time. I’m sure I’m not the only one feeling this way, even though I feel so alone.
Katherine always had a different way about her. From the moment she had an opinion, she was a calming force, in a unrestrained world of choices. Our house was a Wild Things’esque environment, that no baby should have been subjected too… Yet, she handled it with grace and civility. She took 5 people, who were out of control, very loud, and opinionated, and brought us all to our knees. We envied and admired her for her ability to do this, and often made jokes about it. She didn’t do this manically, she was just pure innocence and she could look at you and calm you down. We wanted her to be happy, subconsciously to us. She on the other hand, was fighting her own internal battles. So many choices to be made, for such a small child, with more to come that she could never guess at her age. While others struggled or conformed, she held fast to her beliefs. She didn’t let others tell her how to dress, think, or feel. She just wanted her soul to be happy, and that took being real to herself, and she knew this… Even as little as a toddler, she knew this. And she wanted this feeling for everyone. Peace was important to her, and we fed off of that need ourselves for her. She was so beautiful, inside and out. We miss your peaceful aura, and calming force sweet Katie Baby. Loves and Kisses…
#KatherineTheBrave #DIPG #LovesAndKisses #RainbowSocks

She should be there

Last night crushed me. Seeing Katherine’s friends there enjoying themselves and missing her so much. She should be there. I’m trying to heal but it’s freaking impossible. It’s everywhere. She’s everywhere. Our family is so fragile. My baby is gone. Nothing is what it once was. She really did die. She died. Checking out for a while. I have no choice.
#katherinethebrave

#dipg

The modern world is broken…

Extra lonely without you today Katherine. We miss you so much. The modern world is broken…
I hope all my days

Will be lit by your face

I hope all the years

Will hold tight our promises
I don’t wanna be old and sleep alone

An empty house is not a home

I don’t wanna be old and feel afraid
And if I need anything at all
I need a place

That’s hidden in the deep

Where lonely angels sing you to your sleep

The modern world is broken
I need a place

Where I can make my bed

A lover’s lap where I can lay my head

Cos now the room is spinning

The day’s beginning
Atlantic – Keane

#KatherineTheBrave #DIPG #LovesAndKisses #RainbowSocks

She Deserved

How hard was it for David, the girls, and I to watch our Katherine die slowly? Harder than anything we will ever face again… She deserved more time. She deserved more than less than 1%, and less than 4%. She was a good child and deserved a long life. She should be here enjoying her first few days back at school. Bright eyes and bushy tailed. Looking forward to the new year, eagerly. Seeing her friends, smiling, hugging, and writing stories about what she did over winter break. Showing off her new toys and treats. She should be wondering if her friends want to come for a sleepover. She deserved all of that. And we did too. She deserved more. She deserved more than a hard diagnosis, a slow death, a funeral, and an urn… She was amazing. To us she was everything… our everything is gone. #KatherineTheBrave #DIPG #MoreThanFour #LovesAndKisses #RainbowSocks

Chosen You

“If we would have known, we still would have chosen you…” – Tammy Fox
Walked into this, this morning. Should have waited to open it. 🙁 It’s so beautiful. Thank you Tammy.
#KatherineTheBrave #DIPG #MoreThanFour #81AverageYearsLossOfLife #LovesAndKisses #RainbowSocks