Today I was given a gift for Evelyn from a woman I have never met. She has never met Evelyn either. In fact, aside from a presumably short conversation with my parents over used furniture, and an inquiry into my Mom's t-shirt, she knows nothing about us. What she does know is that the people who gave her an old unwanted tea cart have a granddaughter with a brain tumour.
I hate that this is currently something that defines my daughter. She is so much more that that. She is a happy little girl. She is strong, and brave. She is walking and talking. She is tall, blonde and blue eyed, nothing like her Mommy. She is quiet, smart and funny, just like her Daddy. But, no matter how many facts and adjectives I can come up with, she still has a brain tumour. A brain tumour that is continuing to grow, continuing to take up more space, and define her further.
I worry that other people will forget all the things that she is, and label her solely on her medical diagnosis. I worry that they already do. I don't want Evelyn to be all of these wonderful things "despite having a brain tumour". I dont know what lies ahead for her, but I dont want people to expect less from her, or even be more amazed at her accomplishments. I dont want it to define her. I dont want people to look at her that way. I just want them to see her. I dont want the tumour to be a factor at all.....but unavoidably, right now, it is.
A kind woman brought a gift to my parents for their granddaughter. A cute little pink outfit, capris and a t-shirt that likely wont fit for another summer or two. This gift has come at a time when it was greatly needed. 10 months after her initial diagnosis, and one day after receiving some negative test results, we were reminded that people are thinking of her, and of us, that they care. As time passes, I realize that we are not the center of attention. We are not on the minds of our friends and even family as often as we might have been last fall. Everybody moves on, and though they dont forget, we become less a part of their day to day. I wish we were able to forget in the same way, but it doesnt work that way. We dont have that luxury. I know we are in everyones thoughts, and I'm not trying to imply that we need to hear from everyone, from anyone. But as a Hypothalamic Optic Glioma has become such a normal part of our day to day, a simple gesture from a stranger is a welcome reminder that we are cared for. This little gift has reminded us that our friends and family are still thinking about us, and are likely having just as hard of a time.
