“Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.” – Edna St. Vincent Millay
#FathersDayWillNeverBeTheSameAgain #DaddyTheBrave #CancerDad #FathersDay #KatherineTheBrave #DIPG
Yesterday we mourned the loss of our precious Katherine. It was an incredibly hard day. In between this we planned for a special upcoming event, as today we are celebrating the success of our precious Toriana. Graduating high school, and growing into a beautiful adult. The love and care for a super sibling can get lost in this cancer battle. They deserved more too. We know this. Though the struggle of their sisters or brothers overshadow their successes which should be recognized, but we have only so much time, and energy, so we hope that they understand. We try to make it up to them with a Starbucks run, or a short shopping trip, a hug and kind words of encouragement, keeping our normal routine and offering some stability. Toris entire senior year was just that, a fight for her sisters life, and not about celebrating her successes. She handled it, and to this day has NOT once complained about her sister, our lack of attention, us forgetting the little things. Not once.
Today we celebrate Tori. Alissa and Katherine’s oldest sister. Katherine’s biggest advocate, and her strongest supporter. She will be down on the field, receiving her award, thinking about Katherine, her family, friends, life, the future. She deserves this moment. Think good thoughts for her today. She will need them.
I want to personally thank everyone for taking care of the trollers on Katherine’s page. You are all so supportive, and understanding. Even when the #truth of our posts, are tough to swallow, you know we’ve lived it, and you are supportive of our decision to share our life and spread the word about this awful disease. #KatherineTheBrave received a 0% survival rate. She was given 0% funding for her cancer, #DIPG, from the government. We had to reach far into the depths of our lost souls, and beg for any hope in this nightmare. We fought tooth and nail, and were not awarded for our efforts. She suffered… so much. Our baby suffered. We promised Katherine to fight for her. We promised her that we would use her story to keep other kids from suffering her fate. We promised her transparency. She wanted us to share her story. She smiled for every picture. In fact, if she didn’t smile, she made me delete the picture, and take it again. She’s not smiling anymore. At least here on earth. But that doesn’t make this any less tragic. So, if they don’t want to witness the truth about pediatric cancer, than I am sorry, but I will not stop showing the hell we experienced, that she experienced. I know it’s hard for families going through this as well, to witness the possible future, but it’s real, its raw, it’s what they are experiencing too, and this is why they can’t look at it. It’s hard, I know…. However, my posts are no more graphic than what we saw every day at the hospital, and with our new cancer families children, who have died as well. We were surrounded by it. Why is Facebook any different? It’s not, and its the best place to make her name known, and to spread the truth, and to help find a cure. As I’ve said before, confidentiality and secrecy is what killed my daughter, transparency will help cure this awful disease, DIPG. As people see it here, and as they get angry about this truth, it will scream volumes over a few stragglers in a hospital, experiencing it first hand. In Katherines name, I will not stop showing the truth, until we have a cure. I apologize for anyone we’ve offended, but feel free to remove yourself, or… we will. You could also choose to become witness to this tragedy as it played out to us, think differently, and help us fight.
Thank you… #MommaTheBrave and #DaddyTheBrave
Today we said our final goodbyes to Katie Baby. We watched her go in, and we cried. Together.
It’s been unseasonably cold for the past few days, and starting tomorrow the heat wave comes. Strangely.
A balloon followed me around this morning, and right before we were to leave it floated from one end of the house, all the way through the house, into the parlor, and to the right of the living room. It hit me and continued to remain there until I grabbed it and tied it to Katie’s items going with her. I brought it to Katie today. It also went with her.
Katherine’s Eulogy from Mommy and Daddy
–A young life cut short–
Do not judge a song by its duration
Nor by the number of its notes
Judge it by the richness of its contents
Sometimes those unfinished are among the most poignant…
Do not judge a song by its duration
Nor by the number of its notes
Judge it by the way it touches and lifts the soul
Sometimes those unfinished are among the most beautiful…
And when something has enriched your life
And when it’s melody lingers on in your heart.
Is it unfinished?
Or is it endless?
Katherine was a daughter, a sister, a niece, a granddaughter. But beyond the labels, which she took to so naturally, and handed down to her by birth order, she was also a naturally patient leader. A loving care giver, even in her time of suffering. A consoler to those children also suffering her fate. A kind ear to those struggling to come to grips with her diagnosis. And an amazing cousin and friend to children and adults, alike. You were special, and everyone knew it. Katherine was unfinished.
Katherine, we promise to continue the fight against this cancer for you. We can do this because you’ve given everyone a precious gift in more ways than you know. You’ve left us with some amazing tools. You’ve shown us that even in the worst of suffering, we all still have a little more to give, to ease the suffering of others and to fight one more battle. You’ve shown us that even as we lose ourselves, and our ability to function as humans, or our natural instincts are being ripped away from us, you, or we, can still smile and laugh. You’ve shown us how strong the bond between family, friends, and even strangers, can be when it comes to supporting and loving a child who is suffering with an incurable disease. You’ve taught us that hope and love can move mountains, pay bills, pay thousands of dollars in oils for a better quality of life, surpass a life expectancy, and keep a family functioning. You’ve also given a piece of your flesh and blood to science for further research. It will not help you, but it will stop others from going through the nightmare that you’ve experienced, and I know this would have been your choice. You were a giver, with no regard to yourself, often. Katherine was endless.
Katherine, we will miss your laugh, your giggles, your witty brain, your half hugs and kisses, your love for Hawaii, weird socks, Legos, rainbows, unicorns, sherbet and movie nights. We will search our entire lives for anything comparable to you, but we are highly unlikely to find it, because you were unique, and we could see that in your eyes, through your old soul, from day one.
Katherine you will not be judged by your short life, or insurmountable suffering. You are not finished. You are endless.
We love you Katie Baby. You are Katherine The Brave, now Katherine The legend.
Loves and Kisses, Daddy, Mommy, Tori and Alissa
Two favorite cousins were wronged on June 6th. Katie would have been the one to call when an ex hurt you, a friend wronged you, you needed a ride, a study buddy, or a place to hide for a few days, or a good party planned because no one remembered, or had the ability to plan a party just as good as her, you name it, she would have been the one to call. She’s was so giving. I’m infuriated. I’m so mad for her. I’m mad for them all. She suffered so much. She struggled with her debilitating disease, yet to the very end ensured (in her mind) that we were all happy. What the hell is wrong with this picture? I just can’t hold to in tonight. I’m sorry. I’m so angry. I’m sorry Katie. I’m so sorry.
I can’t find solace in her peace, even though I begged for it.
Parker was Katie’s friend. Even if it was brief in time, she thought he was sweet. Whenever I talked about Parker, she would smile. She sent him a funny video once, he responded with another funny video. From then on, they were forever friends. He loves Legos like she did. Our first introduction to Parker was so touching. He was very shy, he wouldn’t even look up at us when his mom and dad carried him into the restaurant. (thank you steroids) I said, “Katie, give him his gift…” (which she picked out). So Katie walked a big bag over to him, he looked in the bag, dad pulled out some Legos, he looked at Katie and for the first time smiled, than looked back at the Legos and smiled even bigger, and he played with his Legos the entire meal as us parents discussed the horror of this diagnosis, and the fight we both had in the near future.
I will always hold a special place in my heart for Parker and his family. Parker’s family owns a belief in their heart, which is very similar to ours, that transparency is key in this fight. Just read their stories, they are so heartfelt. Private conversations indiscretion are why our children were given a 0% survival rate. It’s why no one has heard of it, including us, until their affected intimately. We’re all in this together. It could be any of us next.
Please follow Hope for Parker, and walk this journey with Mark and Jennifer, supporting them. We are hoping that he, Parker’, is the one. He is so tough, and I believe he is going to make a huge difference, just as Katherine has.
#PleaseShareParkersStory #PleaseShareKatherinesStory #HopeForParker
David and I have been trying to get out more. We hadn’t seen the light of day practically, in what feels like months….I know, I’m exaggerating. But there were days on end that we hadn’t, and towards the end we didn’t leave the house for a few weeks. We couldn’t leave her. We didn’t want to leave her. Miss something. Make her feel abandoned. Fail her in some way. We disappeared socially for months.
So from Tuesday thru Saturday David and I have realized (and have discussed the fact that) we are self medicating by soaking up the affection of the people around us socially, and going anywhere and everywhere we can. We spent last week visiting nieces and nephews to show them that we’re ok: they were all so very concerned about Aunty Jaime and Uncle David. I wanted to ease their minds. We are trying to get some space from the reality of it all. Get out of this home, where the memories never fail to appear around each and every corner of the house. I am fearful of forgetting any little thing, but just as fearful of remembering and suffering with those memories. It’s a constant battle we are playing in our head.
Today was a little different. We planned our little get away for the family. Cleaned up the house. Cleaned my office. Talked. Cried… A lot. We faced some things. We still haven’t touched her stuff. I can’t yet. We did finalize Katherine’s cremation however, hence the crying…
Katherine’s cremation is Wednesday. I did not want to attend this. I had been cemented with that decision since we were told she had cancer and would die, however David insists that we are there for our daughter during this event, and he is right. We owe it to her to say goodbye one more time. I just fear the finality of it all. I’m not ready to say goodbye yet. Stalling and pushing it further every day. Nothing is good enough. The wrong time. The wrong place. The wrong items to go with her. The wrong urn. The wrongful death of my child. It’s just all wrong.
The finality of picking a day and time and place, at long last, had pushed me back mentally, and emotionally, to the day she died. We both felt like a Mack truck had hit us all over again. Last night I woke up three times to check on her. Oddly… I hadn’t done that past the first or second night without her. It’s back and it’s frustrating. Still no dreams about her. However, David’s dreams are vivid. He sees her dying, over, and over, and over again… Every morning, as he moves from slumber to awareness, she’s struggling to breathe her last breaths. He ends up in a panic. Maybe that’s why I fear the dreams, and they aren’t coming, as I would want sweet dreams of Katherine, and only sweet dreams. She was our sweet dream for 7 years. I can’t let my subconscious ruin that for me.
Thank you Lauren for this video from one week ago today. The day before she passed. I forgot about this moment. Because of these recordings, we are consistently reminded of how special that time was with her. I will never regret our decision to have you there with us for the last few days.
We miss you Katie Baby. Loves and kisses sweetie, and we are so sorry.
Many of #KatherineTheBrave family and friends will be at the Angel stadium today to celebrate an Angel game, Katherines life, and spread the word about #DIPG. Janet Demeter of Jacks Angels is also running all the way from LAfor Katherine and DIPG and will be at the stadium today as well. The Max Love Project has offered us access to the batting cages, which was one of Katherine’s favorite events. They are also honoring Katherine this year for their annual fundraiser to Strike Out Childhood Cancer. Please join us, even if you don’t want to see the games, say hi. We’d love to talk about our sweet Katherine. We will be under there Big A until 4:30 PM and than in the stadium, in section 260, after 6 PM. See you there! Katie baby, we miss you.