The Placentia Yorba Linda Unified School District adjourned in memory of Katherine on June 21st. We thank you all for that, and for everything you have done for Katherine after her diagnosis. She loved going to school. She loved Glenview. She made wonderful friends in her short time there. She wanted so badly to be there more too. Although she just couldn’t towards the end becuase of her anxiety. She knew she was different, the moment she was diagnosed, and no matter how hard we tried, and encouraged her, she just could not hang.
I just can’t imagine the emotions of a child at 4, 5, 6, feeling different prior to diagnosis. Why can’t I play as long as these kids? Why does my head feel so much pressure? Is anyone else feeling this? I’ll just try to ignore it. The emotions. Which after diagnosis probably led to questions of Why me? Do they all know? Why is everyone staring at me? What did that kid mean by, “Are you going to die?” Trust me, we got it all… and so did poor Katie. I wanted to save her, assuming she would live forever, and keep her education and social structure moving forward. I wanted to make her normal, but I gave up trying after a while. I was encouraged to do what was best for her, it being a terminal diagnosis, and we did. She wanted to be home. Safe. Surrounded by family.
Her teacher came here several days a week at that point, and oh man she loved that. She loved Mrs. Sullivan, with all her being. Here is Katie with Mrs. Sullivan on June 2nd, my birthday, and 4 days before she passed. She was smiling here, but #DIPG took the visual of a smile away from her. Her freshly made bird house from Erin behind her. She was so proud of every accomplishment, because they were so hard to accomplish, and she did it.
I look back and realize that my body, mind, soul prevented me from seeing the truth of what was happening to my daughter at this moment in time. The fast decline. I saw her strong and whole, and here I see that she clearly is not. I am so sad about this. I am thankful that I didn’t realize it, but I am sad that I could have said and done more possibly before she slipped into her sweet quietness. For her, and for myself, selfishly… I had more to say. I know that feeling will pass with time. I just hope it does soon.
I cry all of the time now. Here and there. Home or while out. Driving is the worst… Too much time to think. It doesn’t matter where I’m going, or the time of day anymore. I just lose my shit randomly and travel back to the days before she declined, and then eventually onto her days of decline, and then to the present. The awful present. Then it’s all downhill from there. Every time. I wish I could hold my sweet precious Katherine. Just one more time. I want to squeeze those frail shoulders and scoop her up and nuzzle her head and cheek. Kiss her nose and say, “I love you mongrel…” “I love you so damn much…” I’m dying inside. I’m not me anymore. It’s like I’m hovering. Or running. Or both. I can’t maintain. I can’t focus. I just can’t. I try to hold it in. I try not to make other uncomfortable. It’s hard. I can’t stop it. It comes like a tropical storm of tears and pressure. It builds like a thunderclap and roars through my head and my heart, until the tears just flow, and flow, and flow. The storm… It takes over my senses and I can’t think of anything else but my child. How could this be? Why is she gone? What did we do? What didn’t we do? Was it a dream? Was she really here? Am I being punished. Was she?Everything is just so wrong… It’s just so wrong. And just like that, it progresses. I remember something simple. Something precious. And I think fondly of her. I remember what she really was and what would matter to her most. It’s a coping mechanism. I know it’s me subconsciously trying to stop myself from going into a panic. Maybe I just cry enough to move on for a little bit longer. I can do this. I can get through the next few minutes. Hours. The morning. The night. This meeting. Buy myself some time to breathe. Like a normal person. Remember normal. Like we used to be.
Kyleigh got me through today. She brought me through the emotional theme park turnstile which I now call life. She let me talk about Katie. She didn’t stop me. Who would? She’s worried about her Aunty Jaime. I could see it. She wants me not to be sad. But she misses her too. I reminded her of how much Katie cared about her. How important it was for for Katie that Kyleigh was happy. She lived, loved and breathed Kyleigh’s happiness. She cared about everyone’s happiness, especially mine as well. It was her biggest concern ever, that other enjoyed life. So Katie, guess what? Kyleigh made mommy happy today. She took care of that for you. Mommy cried and Kyleigh talked to her. She made sure mommy smiled and didn’t get too sad. We miss you Katie. Kyleigh misses you. Loves and kisses. #KatherineTheBrave #DIPG