Wednesday, February 28, 2018

Big Dreams

Sleep is an elusive thing. Between the stress, the steroids and other factors- my brain does not want to shut off. Unless of course someone is asking me a question or I have to remember a schedule- blank city. We forgot not one but 2 of Bella's tap classes last week. By we I mean her. We are to the point they know mom's memory bites and they are responsible for remembering. In her defense, she did have a cold and truly benefitted from the down time and not infecting others.

After brain surgery- I had wild dreams. Narcotics will do that- hallucinations really- auditory, visual. I'd wake myself up talking to someone and see they were not there. I am not a fan and was relieved to get off the crazy meds. Maybe once or twice a week do I sleep deep enough to dream. It's like visiting an old friend, sleep and dreams- oh how nice.

https://www.stbaldricks.org/participants/mypage/940469/2018

We are on the cusp of March. Lily is my calendar girl. She is a planner. For 2 years, she's been planning to shave her head again for St. Baldrick's. Once again, I wait and see what time will bring. It brings Lily with even more conviction and desire to help. The girl has dreams. She loves people. She loves raising money for cancer research. As she is turning lucky 13 this year, I gave her the password to the St. Baldrick's account and helped her get her page for this year set up. I showed her how to check for donations and to send Thank yous. She has been practicing lettering and had some incredibly generous donations- so she spent one weekend making thank you cards.

2017 was a rough year for loss. We lost some very special friends and it feels like everyone we know is facing tough battles. Lily watches me intently and asks- how is your heart? She knows some days it hurts a lot more than others as we wade through the feelings. Complete gratitude she and I are here together, shock and anger that wonderful humans are not. She sings. She reads. She feels. She plans her shave, she shares her dreams at school and her teachers have been incredibly supportive.


The first year she shaved, she did it for me. The second year in honor of sweet angel friends we had during treatment. This year she wanted to shave in honor of her mutant buddies. Li-Fraumeni Syndrome gives us faulty tumor suppression, but truly incomparable friends.  This year she shaves in honor of Ramernation, specifically Brent and Lauren Ramer. Lauren is about to finish chemo for her 4th cancer, 2 of which were brain tumors.  Brent passed away December 30 at the age of 18, after many years of battling different cancers. Yet it is important to Lily to shave in honor of all her mini mutant buddies. Kids like her, Brent and Lauren whose genes may be faulty yet they leave an exceptional impact on everyone they know. She shaves so we can find better treatment and cures so kids can realize and live their dreams. A million dreams.


Please Join Us on April 22, 2018 for the Shave! No shaving required! Show your support for Lily, her mini mutant buddies and all kids who deserve the chance to live their dreams!! You can donate , you can share her link, and there even may be an event near you!

St. Baldrick's HAWAII

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)