Daily Archives: June 3, 2016

My old soul

My old soul… Hospice has given her two weeks. This is not set in stone. By any means. Hospice said she may last longer, but the body can only take so much. Her words, “I can’t imagine her dealing with this for more than two more weeks…” I thanked her for that. Honesty and transparency mean the world to us right now. So maybe longer, but our best bet is to plan for this event within two weeks so that we have our head together when it does happen. The worst is yet to come. I suppose. 
This simple life we all go through every day, blindly, is so terribly hard on Katie right now. Getting up at 4 AM because she can’t sleep. Bathing is miserable for her. Watching her hurt and cry, struggle to breathe, eat, swallow. Wetting herself as she pleads with us to move faster and allow her to pee in a toilet like a normal child would. She got extremely sad because she can’t make her other favorite cousin Molly’s birthday party. She asks why the kids outside are laughing. I haven’t shared but her school has a carnival soon. She’s going to miss it. That one hit me hard. Tori and Alissa never missed their elementary school carnivals. She even struggles to eat her last favorite meal, sherbet. She is struggling to live, period. 
After all of that and more, she fights. She wants to be normal, and be here, with us. She still loves hugs. She doesn’t smile, but she loves them. Moms can tell. She yells at us sometimes, so she has some vigor. She thinks she can still drink and eat. She keeps trying.
However, I want to say let go #KatherineTheBrave. I refuse to allow my child who once looked right through people souls with her beautiful solemn stare, as if she could see your true inner being, suffer any longer. She deserves peace. Let go. Don’t suffer anymore. I’ll take my two weeks with joy and do whatever you enjoy doing. I’ll do Legos for hours. See 14 sunsets and 14 sunrises. Wake up to you 14 more times. As long as you are at peace and comfortable. Not suffering. Playing with other kids, in whatever is next for us. If I get more than 14 days and nights, I’ll be grateful, as long as they are all joyful days that you are not suffering. I just want you to be at peace. Whatever that takes. You deserve joy, and only joy. It’s the hardest thing for me to do, to tell you to let go, and I haven’t told you yet, I may never say it, but it’s what I want to say. I want you to be at peace, and if leaving me gives you that, than so be it. You deserve happiness and joy. You deserve peace and serenity. #KatherineTheBraveDeservedMoreThanFour
I love you Katherine and I’m so sorry. I’ve never been so sorry for anything in my life. I am filled with sorrow and sorry’s and I can’t tell you how much stronger you are than I will ever be. My big brave baby. 

#DIPG