Friday, October 10, 2014

Surrender to the Unknown

I know it is just hair. I am very aware of the fact that hair grows back. But it is not about the hair you see, it is about my reality day to day. On Thursday my kid has cancer, I watch her get poked with needles, I follow her around with an IV and sick bucket, I have a huge bag filled with medicines and
games and a list of things that make no sense unless you have done chemotherapy. (zip lock bags, can anyone guess why? Because you can zip it up after getting sick in the car so the rest of the ride you are not trying to pull over to find a trash can or smelling it). Thursdays are hard, they are draining, they are the worst day of the week. Friday-Wednesday I can pretend Emma is a normal kid. Sure I avoid crowds and have that odd list of things in my diaper bag along with medicine and a list of her doctor info but for the most part we are normal and I try really hard to keep it that way. I can pretend that she is not sick. I can pretend my life and hers did not get a whole lot harder with the C-word thrown in. Normal.

A bald head. Not normal. A constant reminder that she is sick, not normal. Again, these are MY issues. Emma is fine. I deal with these issues on my own, crying in private and only saying positive things about her appearence when she is around. My pretend world is crumbling and I am not sure what to do. So I cried, a lot then brushed off the tears and made Emma her first hair appointment. If
we are going to lose our hair then we are going to be stylish and look as normal as possible. None of this sparse hair or patchy looks, we are going to rock this thing. Today we are cutting her hair in a short, cute style. Maybe a pixie cut. Hopefully her hair remains sparse and we can keep rocking a short do. If not then Daddy will be buzz cut buddies with our girl. She got to pick out a couple hats and headbands to match her stylish outfits too.

While I am here I would like to comment on the Brittany Maynard situation.

Dear Brittany,
I will not preach to you, although we have a faith base I will leave God out of this and instead appeal to logic only.
My daughter has a form of the same brain tumor you are fighting. It is a juvenile, less aggressive form but along the same family. We were given a horrible diagnosis just like you. My three year old was told she had months to live. Possible a year with surgery and chemo treatments. They were wrong. We had the two top specialists revaluate her biopsy tissue and it came back as the juvenile form. My point is, doctors do not always get it right and they "practice" for a reason.
What would I tell my daughter if she was older? If her diagnosis was worse like yours? I would tell her to fight. Why fight a losing battle? Because as a mother, taking care of my sick child has made me a better person, less self involved and more faithful. I have learned to live one day at a time and I am learning not to worry about small things. Cancer puts life into perspective. Brittany, your life may be cut short but it will touch so many people. Your life will make them better in their lives. It will enrich, it will inspire, it will be worth living. Even when you are fully dependant on others your life has meaning. Those people will learn amazing life lessons that they would never learn if you quietly disappear. As a mother of a cancer child I ask to you reconsider what your suicide means to my daughter. What is that message you are sending to her? You are telling her that she is a burden to me and her life means nothing. How sad. The opposite is true, she is my everything and her life is doing amazing things for the world.
Brittany, choose to fight, choose to believe, and surrender to the unknown.
Anya - Emma's Mommy 

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