Posted on October 2, 2017
Sunday October 1, 2017
The month of Gold is almost gone and pink will be plastering our lives. Everywhere. Now I’m not taking away from breast cancer survivors and angels. I just want to put something into perspective. The NIH budget is 32.3 billion for research. In 2016, $656 million was budgeted and spent on breast cancer research. In 2016, $151 million was spent on just childhood leukemia, $37 million on neuroblastoma, and $351 million on all other pediatric cancers. That is a total of $539 million for all pediatric cancers. There are many types of pediatric leukemia, like CML, CLL, ALL, AML and all the subtypes of rarer forms. There are at least 10 different types of brain tumors that are only occur in children. We are taking about $539 million being split between 100 or more types and subtypes of cancers that ONLY OCCUR IN CHILDREN. Now this is only federal government invested money, so who knows how much will be cut in the coming years with our current president. Childhood Cancer isn't on his radar because the white house is lit up in pink lights tonight. For 30 days, no gold lights for our nations children.
We have lemonade stands and tee shirt boosters to raise money and awareness for our kids. And we are the richest, most powerful nation in the world? Childhood Cancer awareness is truly a grassroots campaign. We soldier on with our warriors and angels and get the word out and beg for funding.
The wish list for the Art Studio at Columbia is over. Over 230 people donated over 1100 art items spending well over $5000.... All for the love of Grace! Thank you!! We spoke with the art director today. It was very hard for her and the volunteers to be receiving all these gifts as they were grieving the loss of Grace. The director tried to explain to me that she was so happy to be receiving all these amazing items, but she mourning Grace. How could she feel 2 polar opposite feelings at the same time? I told her that it was the power of Grace's love and to accept the love and pass the love on.
Grace's nameplate for her niche has not been done yet. I went and saw her today. I love being able to visit her whenever I want. I could sit there all day just talking to her.
I spent this quiet evening looking at old videos going back about a year. She was so happy! My girl loved food! Once she mastered the spoon, she was on her way to pure freedom, shoveling whatever she could in her mouth. One of my favorites, is her eating oreos right out of the container. I asked her what she was eating and her response: "oreo". Mind you we had da-da, mommy and John-John perfected and that was about it. And she blurts out "oreo".
John has started art therapy through a bereavement program and he's doing well. We are fearful that he is going to feel that he needs to make mom and dad happy. He is very comforting when we cry. I just want him to be a kid and not worry about us and all these emotions.
We placed a large photo of Grace at the top of the stairs. Every time Rose passes that picture of Grace, she says "hi" and waves to Grace. We have come to talk to Rose about Grace at the picture. Telling her to send kisses to her big sister and she does.
3 weeks and 3 days she is gone. Time doesn't heal. That's a lie. It makes thoughts fade. Memories fade and get blurry. You don’t remember with the clarity you once had. I know families that are at the 1 yr, 2 yr, 5 yr mark. How do they do it? Each day is worse for me. I don’t want the days to pass. September has ended and this is the month my baby has died.
The cards and private messages are slowing down. Soon they will stop. Life moves on for everyone else. I don’t want her to become an anecdotal story for someone. A story in someone’s passing conversation. “My Facebook friend lost her daughter to cancer”. Or “I knew someone who lost their daughter to cancer”.
As we close out September, childhood cancer awareness month, please hold onto my baby. Keep her and all the babies out there fighting and the angels above, close to your heart. You don't know what tomorrow brings and it's not guaranteed.