My now youngest child graduates this school year. Then that’s it. David said, “One more year of PYLUSD. Doesn’t seem right…” When my youngest nieces and nephews are graduating, I’ll be attending their graduations and not my youngest’s graduation. This just hit me. I hate my life right now. Everything about it. It’s like a piece of me was ripped out and the rest of my body still thinks it’s there. Trying to find it. The sudden realizations are killing me. I want and need an escape.
Where are you my sweet Katherine? Are you off somewhere still being brave? I know you loved horses but we’re still petrified of their size, yet you still got on them for us, for my need to fit it all in, and I’m sure you knew time was of the essence. I hope you know that you don’t have to be brave anymore. You can relax and be a normal kid now. Wherever you are… (can’t stop crying)
“How many children do you have?”
It gets me every time… and I’m asked this daily. It’s like I have a target on my head.
On one hand I could say nothing, and push that bitter feeling deep down and move on. Deal with it later. In my own head. It’s my burden anyway… I’ll share it with my friends that “get it.” On the other hand I could tell them the truth. Not give them “the out” for asking. Tell them, and listen to the, “At leasts…” for the next several minutes as I cringe and suppress the urge to tell them how their are “NO AT LEASTS!” in child death. Just pain… and loss, and suffering. No positives. None…
Either way, any answer, I suffer… I’ve been asked this at the salon, the dentist, at the cash counter, social events, behind a bathroom stall door… I wonder what the girls say when asked, “Do you have siblings…” I wonder if they give the same guarded swift spin of the head and dead glare as I have many times… Processing the question. Preparing the answer. Evaluating this strangers ability to be compassionate. As the person stares back wondering what they said wrong… no fault of their own.
Does this get any easier? It’s shocking every time, and after a year it definitely is not getting any easier. It only makes me angry and frustrated and the person asking doesn’t deserve this. I know… But I don’t either. 😔
I miss you Katie. Your daddy, and sister do too. We love you sweet babieskies. You didn’t deserve to be nothing but a bad response to a bad question at a nail counter, or behind a bathroom stall door. You deserved to live and be the special person you were. Loves and Kisses, See You Next Time…
Our daughter Katherine was given a zero percent chance of survival. She was sent home directly after diagnosis and put on hospice the same day. As others were fighting with hope, she was given none. And we had to plead and beg for any support or medicine that would give her more time. Not a cure. Just more time. And through it all, she handled it with grace and integrity. This is why we called her Katherine the Brave. I miss you sweet Katherine. We will forever share your story.
Please help us share her story.
This is Katherine showing us her dislike of Monday’s. At the time, I agreed with her. She was such a silly child. Constantly trying to make us laugh. This was 2 months before diagnosis. 2 months before our world was shattered. I imagine she started noticing little differences in her sense of balance, sight and touch. Dizziness, and possibly headaches. She never said a word. Never complained. She was such a brave child. Always had been. To the very end she cared more about others, than herself. I wish I could be as brave as that child. I wish everyone could be as brave as her actually. It would make a difference for humanity that the world could not comprehend. I guess Monday’s ARE very much like this. Miss you mongrel. So badly today. #IHateMondaysToo #katherinethebrave #dipg
Somebody told me the other day that it’s been scientifically proven that it takes about 3 to 6 months for someone who has experienced a loss of somebody they love to start healing. I just smiled and thought of all of the other people that have said that to me. It’s been 10 months since Katherine has passed and I still can’t breathe when I think about my child who is no longer here. So, I just disproved that fact, and it’s going into the mental BS bank where all of the other scientifically proven facts, and unsolicited advice, are stored. I miss her more now than I did in the first 3 to 6 months. I don’t think about normal things like were those wrinkles, I’m dreading this meeting, wish I didn’t have to drive in this traffic, how do I make an excuse to avoid that party, I should change up dinner and make something else tonight. None of that matters anymore everything I do is constantly and utterly shadowed by June 6, 2016. As a parent of a child who has passed away your whole world is surrounded by the events leading up to and the day of your child’s death. Anything you do that even gives you the microscopic hint of joy is followed by intense guilt and then sadness. How could somebody get over that, it’s simply impossible, as it should be. If guilt and sadness is all you have, then you are actually better than most really… The guilt and sadness are not shocking to me, although I know it will be to most of you. What we’ve gone through is unimaginable, and I don’t wish it or this pain on anybody. Our lives are forever affected. Every decision that we make is paled by the memories of our daughter who is no longer here. Watching my husband come out of his job crying yesterday because a memory of Katherine ruined the presentation in front of all of his coworkers has opened my eyes to this theory. It happens to me all the time, but I’m a mother and this is expected. To watch a grown man struggle in the same manner just solidified how frail we have become as humans after this tragedy. I’ve been sitting here, as most of us do after something like this and waiting. Each day waiting for it to get easier. Waiting for each anniversary to pass by, so maybe the next one won’t be as difficult. But I am mistaken, each anniversary gets harder, and more complicated. Each anniversary means I am farther away from my life and experience with Katherine. That is why this is so much harder as each day passes, and why it gets worse. In a way I look to the future with a grimace and pain, and not joy. There is a silver lining here, which I’ve accepted. I also look to the future with more understanding and a deeper appreciation for life and family in general. I just wish that it didn’t take the death of my daughter Katherine to make me realize it. Regardless of my empathy for life and heroism before Katherine’s death, nothing compares to it now. I hope that by following Katherine story, and watching her go through the struggle on to death, that you were also changed. That you care more deeply and are aware that this cancer with a 0% survival rate exists, and that it angers you enough to be part of the change. Today is the day, make the change. For Katherine. #KatherineTheBrave #DIPG
I received the bracelet I purchased today for the DIPG fundraiser and I’m wearing it proud. 🙂 Thank you so much! #KatherineTheBraveDIPGFundraiser DIPG Fundraiser
I saw you today Katherine. I saw you in your cousins faces, dressed in princess gowns, giggling and smiling. I saw your joy in them. I saw you in the celebration of another year of your cousins life. I saw you in our family gathering, everywhere. I stared frozen, hurting, and I cried. I wish I could say that seeing you in them made me happy. That I wasn’t dying inside when I felt you everywhere. But I can’t… You my sweet Katherine were the absolute best cousin ever. You cared so much about everyone elses joy. I drove home, sad and quiet, and I saw the green hills, and you in them. The cool breeze blowing the tall green grass reminded me of Easter, and us, and you… Stuck in traffic I just stared up there at all that green cascading the entire sky line, and my first instinct was to say, “Girls look! Isn’t it so pretty?!” It was so important to me that you girls saw the beauty in things, even to the point of exhaustion sometimes. You would respond, still being so young, similarly to how your sisters would respond at your age, “Yes, it’s beautiful, can we go see it… There’s horses up there. Look at the horses!” Then I remember, and I’m devastated all over again. I remember June 6th. Your last breath. You really are gone, and there is a huge gaping hole in our lives now. And I’m broken again. Driving. Sad. Silent.
I miss you baby. And I’m so incredibly sorry that we could not save you, and keep you here with us. I am sad that you could not be there when we sat around and talked today, at your families party, and watched as your cousin blew out his candles. You deserved to be here. Not this. This is not ok. It will never be ok.