Monthly Archives: June 2016

Relief

I can’t believe I’ll never get to say another silly word to her, and then watch her face light up at the funny thoughts and words that come spilling out of our heads… I’ll never, ever, be able to do that again. Ever. I still can’t believe it. I can’t hold her. Rub her hand. Look down on her. Reach out and push her close to my hip and squeeze her in. Call her silly names. Refer to her in the present, or plan for her in the future, any more. She’s gone. It’s just getting harder. The pain… And reality of it all.
It was so relieving at first to watch her be pain free, and go. I was actually relieved for her, and for us. I felt guilty. So very guilty for that. She was free at last from the hell she was living, and the cancer coursing through her frail and weak body, as it caused her organs to fail one by one, from the bottom up. I didn’t have to watch her suffer anymore. We were all free. The guilt of these post death thoughts are staggering. Although, I had wondered rather quickly when I would really feel the suffering that a mother of a child gone too soon “should” feel. Well, I wonder no longer.
Now it’s just anger and pain that she was in this state of hell she suffered at all. The nightmare of the 12 months we suffered. What was stolen from us. What we fought to preserve and still were unable too. What we can’t do. Ever. 
We find little joy in our small feats and accomplishments during this time that we had with Katherine. Right now they just don’t seem enough. Nothing can make them anymore than that right now. Please understand that. It’s going to take us time to be aware of our surroundings, in any form.
She didn’t deserve this. She deserved so much more. She was amazing. To me she was so much more than amazing. Katherine was everything. Katherine was unfinished. Katherine was endless.
#KatherineTheBrave #DIPGMonster #YourNamePrecedesYou #KatherineTheLegend #Regret #NightsAreHarder #DIPG #LovesAndKisses

The “Kind” Of Child We Had

On one of Katie’s final days I had had a horrible nightmare. I came running out of my room crying, and searching for her. I ran into the dining room and I was able to see her in the living room, on the couch, still alive, and I just broke down. I was crying and sobbing, and could not contain myself. I ran to the bathroom and cried harder, and louder. I didn’t want her to hear or see me, but at some point I even forgot that she was able to. I was so beyond consoling. I could hear her though, she immediately yelled for her dad. I could hear her slurred words, as she was trying her hardest to work her struggling mouth muscles and say, “What’s wrong? Why is mom crying? Daddy? Why?” She asked him to take her to me, at some point… He carried her to the bathroom where I was a bit more calm, and he held her up to me to see that I was ok. I told her I was ok now, I had a bad dream. She was not buying it. She seemed a little relieved, but she wasn’t sure. She started to hug me, with both arms, and in her best possible effort, even though she could hardly move her arms and hands, she patted my shoulders. Little taps, with what little ability she had. Just constant little taps, up and down. Her finger tips, slowly calming me, and pushing new fresh energy into me. The sobs and sadness dissipated. She just patted and patted and whispered in a slurred speech, “It’s ok mommy. It’s going to be ok…” I cried harder, but it was less sobbing, more tears, as I calmed down. I hugged her so tight. I knew, at that very moment, that sadly this was going to be the very last time she would do this for anyone. I told David, we both agreed that this wonderful child, who loved to console others, was still able to, even in her final days, make us feel better. However, we didn’t know how we were going to survive without that feeling from her any more. And we were right… It was her last time.

In this picture Katie is consoling a classmate. She had just had a huge fight with her sister. We joked that Katherine had her fair share of sisterly struggles. I didn’t believe Katherine was going to ever leave me when this picture was taken. I had no idea as to what was coming in the future. I didn’t put stock into her ability to make others feel better, and naturally it came to her at this time. Even though I had accepted that she was diagnosed with an incurable brain cancer, I didn’t fully accept it, so things didn’t soak in to our psyches as we wished they would. How could a parent process that fully. She was in her element in this picture, and the more she was normal, and doing the things she did best, the harder it was to imagine a world without her. To imagine that a tumor, millimeters in size, could destroy such an amazing soul. I will never understand that reality. Ever…
Our child was kind, and gentle, and lived for the simple joy of those around her. She did not like to see others unhappy, or upset about anything. If she did, she wanted to heal whatever saddened you as quick as possible. She would stop what she was doing immediately, stare and evaluate the situation, then move forward with whatever she could do to ease the stress, or angst. As a child, that often meant a kind word, a piece of whatever she was enjoying, food or a toy, a hug, a pat, a suggestion of you joining her in whatever it was that she was enjoying at the time. She was like many kids out there. I wish for you all that feeling to be able to be in the moment with your littles ones. I wish for you all to be able to reflect on the little ones around you now, and recall similar traits. We forget these things, and we don’t appreciate them as we should. I’m hoping that you will, in honor of Katie.
I miss you Katherine. I’ll be seeing you. Loves and kisses.
#IllBeSeeingYou

#LovesAndKisses

#KatherineTheBrave

#DIPG

#MORETHANFOUR

Celebration Of Life

#PleaseShareKatherinesStory #KatherineTheBravesCelebrationOfLife #July16th
Some things that #KatherineTheBrave loved…
1: rainbows

2: face painting

3: bounce houses

4: horses

5: Hawaii

6: Hawaiian music

7: waterfalls

8: beer (for mom and dad to be happy 🙂 )

9: food

10: water slides

11: balloons

12: crazy socks

13: sherbet

14: movie night

15: Legos

16: princess rose tea parties

17: her favorite cousins and friends
And more…
We are trying to create a special event to honor our beautiful Katherine and the fight she led for 12 longs months. My sisters Cindy, Kanani and Samantha have started a PayPal account to help pay for the items that are not donated. We are open to any and all suggestions, donations and support. We need volunteers… We are going to use this event to spread awareness about #DIPG and what Katherine fought with for so long. All the while celebrating her life and just how special she truly was.
The remaining donations will help us get Katherine and our family to Hawaii to spread her ashes on her favorite island of Kauai.
Can you pleaseshare the link below for us, and #PleaseShareKatherinesStory.
Thank you, #MommaTheBrave and #DaddyTheBrave
https://www.paypal.me/katiebrave

https://www.facebook.com/events/1380535048639897/?ti=ia

Lessons

I received Katherine’s school items today. I gently placed them to the side. I can’t look at them now. I know they are safe, wrapped up in the best possible fashion. I will get to it when I can. I received the text froom Katie’s teacher, and heard the sorrow in her writing as she reflected on having to clean out little Katie’s desk. All of the kids gone, to enjoy their summers, and Katie who was not around to pull out her own years worth of art, writing, and arrithmatic. What little she was able to do. She was so proud to be at school, until she couldn’t handle it anymore, the anxiety taking over her frail, little body. Katie didn’t grow smarter academically this year, she did however learn a lot. She learned how to hide her pain, how to love us even when she felt her worst, to smile when she didn’t want to so that others would learn more about her struggle, and so much more… She taught us something too. There will be more on that later. Thank you Barb Sullivan, for being amazing to Katherine, and to our family.
NOTE: Katherine’s year book will be at her end of life celebration for everyone to sign. She didn’t get to walk it around, to have her friends sign it, so we will do it for her.
Thank you everyone.
#KatherineTheBrave

#DIPG

Katie is everywhere

Katie is everywhere. On the walls, hanging, under furniture, displayed for everyone, in every room, even my office. I’m sure many of the other families felt the same way. It is hard to escape the pain of never having her here to add to it any further. There will be no more art distraction, Legos nights, crafts events with cousins. No more parties at random. She loved random parties. It will be missed to incredibly much. Yet it’s also hard because it doesn’t matter where we turn, or what we are doing, she was there, Katie is everywhere. She’s still there. That’s ok, and it’s not ok, all at the same time. 
I didn’t sleep at all last night. At one point I heard something rustling. Turned on the light, and one of the random balloons still flying around the house from Katie’s birthday party that she there for me (at random) came flying at me, directly into my face, and I turned on the light just in time to reach out and grab it. I was in shock. Just staring forward. Not even looking at this balloon. Just staring forward in complete silence after the initial scream of shock. I tied it to my lampshade and left the light on for the rest of the night. Sorry David, but after screaming out loud and shaking for the next hour, I couldn’t sleep in the dark. He woke me up with kisses this morning, so I’m sure he got the point. 
We fly to NY tonight. After all of that stress yesterday, I had the most incredible empty feeling overcome me as I realized that we would be flying out tonight and not taking our baby with us. She would be here. Alone. Not ok. “I won’t do it!” I told David. I cried all night off and on, and part of the morning. My husband took it upon himself to contact the crematory and ask them for the proper paperwork to take her with us. They found the paperwork, fast tracked the process, and sent somebody down to the city office to get the death certificate officially filed. I can’t thank them all enough. I probably would have not got on the plane. I know it’s slightly ridiculous, but I have yet to lose my mental state, so I was due for some crazy. Luckily, I haven’t had to use it yet. When I do, I hope you all will still be here to make us feel normal.
Here’s #KatherineTheBrave. She loved roses. She had a rose party a few weeks before she passed. Here’s a picture of that party too. She was magnificent. I miss her so much. 
#KatherineTheLegend

#DIPG