Inchstones

When I hear the sound of her laughing my heart swells. So many emotions flow through me as I listen to the sweet sound she makes. I never knew she would laugh so hard. I feared they were right and that she would never understand. Man, were they wrong. She laughs. Did you hear that neurosurgeon? She LAUGHS. She can make a joke, she knows when things are funny in conversation, in a show, in a book and even when she hears us laugh, she knows somethings funny so she laughs along too! 

Hearing my first born laugh, truly laugh, was something I feared I would never hear. At the worst times we were told she didn’t know she was alive, where she was, or who we were. Do you have any idea what it’s like to hear someone, well not someone, but a top 5 (in the world) neurosurgeon say this about your child? It absolutely guts you. No, not that hurt you feel when someone close to you hurts you or stabs you in the back. No, not that sadness you feel at a very lonely time in life. No, it’s a deep gutting, one you fear you’ll never recover from and slowly but surely you do.

From the start I’ve #FUIS and I’ve truly held true to my hatred of this illness. Many have told me that I need to let go of my “anger” and learn to “forgive” and “accept”. I genuinely believe that it’s my passion and drive that have helped myself and my family through this journey and that which we continue on. You bet your ass I’m angry, my child was robbed of two years of her life. Years that we are never sure she will ever regain. The damage done to her brain by this horrible monster of an illness is not something that I can easily forget and I refuse to accept many things.

I refused to accept she wouldn’t make it through the week. She did. I refused to accept she wouldn’t talk. She talks. I refused to accept she needed a hemispherectomy. She has her entire brain. I refused to believe she wouldn’t eat on her own. She eats on her own. I refused to believe she would never leave diapers. She’s potty trained. I refused to believe she needed to be in special Ed full day program. She’s in a general Ed TK and thriving. I refuse, to believe that anything about her is not good enough. 

Each day she constantly amazes me. Something new is happening every day. Tonight she asked for peanut butter and I said “okay sure.”She proceeded to stand up, walk to the fridge and grab the peanut butter from the top shelf! She even closed the door. She came back to me and said “here you go mommy,” and then said “oh, I’m a get a spoon.” Little moments like this may seem so little to others but for us they are monumental. My child asked to eat and was able to get what she wanted on her own. Feeding herself was something I always knew she would learn to do. A few years ago when I was being told the worst of the worst I was also told she was “malnourished” and needed a G-tube. I feel passionate about not overusing a G-tube and I wanted Bee to try just a little while longer to eat. I racked my brain and came up with some of the coolest versions of the ketogenic diet meals just so she would eat. She did. Now she eats just like any other child. She eats like a bird, but she eats. (She takes topamax, amongst being used for epilepsy topamax is used to treat obesity and severely suppresses your appetite).

The teacher told me today that she was reciting the alphabet with her peers, identifying circles and the colors red and blue. This all from the child who we were told wouldn’t. Well actually let me not exaggerate. We were told she had a 3% chance.

 You bet I’m going to keep fighting for her. You bet I’m going to stick it to any who doubt her. That’s why she calls ME, “mommy”😍