Ella and I signed up to do a Childhood Cancer walk in Chicago today, but with the rain it was too cold for Ella. She stayed home with daddy while Tirtha, Nik, Carrie, Jesania and I walked in her honor. Even though we were completely soaked, it was worth it. They had an opening ceremony and they gave me a medal for Ella. For the kids that are no longer with us, they had a moment of silence. I watched a mom's eyes well up in tears as she prayed for her child that didn't beat Cancer. It was all I could take. I was glad that I wasn't standing around everyone so I could cry. As I dried my eyes- I could see that we were not the only ones. Moms, Dads, Aunts, Uncles, Friends- all crying. The one thing I noticed, was that not one child I saw was crying. Whether they were in treatment or a survivor, they were completely happy just to be around the people they love. I think it is harder on us than them. We think about what they will not have, instead of what they do have.
When I put Ella down tonight, she fell asleep right after we prayed. I sat there stroking her hair and looking at her face. I just kept thinking it is not fair that she doesn't get to have a normal 4 year old life. Again, thinking about what she will miss instead of what she has. She has parents that love her. She has family and friends that would do anything for her. She has a happy home. She has good medical care. She has the love of her God. What more does a 4 year old really need?
2 of her doctors were walking today. They were, on their own time, to hug their patients and support them. This really went a long way for my spirit and faith in her care.
She had a rough day today. Her belly was so swollen that she wouldn't let us touch it. She was really tired and didn't eat as much as she had been. We checked in with her Dr. to make sure she was okay. I feel so cautious about ever little thing now. the days of "Oh, she will be okay." are gone, and they probably will be for a very long time.
Night all.
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