Wednesday, September 24, 2008

From the mouths of babes

Had you said to me, when I was 14 years old, "Hey, how 'bout you get up in front of a room full of adults, about 150 of them or so, and make a speech. Oh, and? Could you make it about a really personal, painful subject?"

I would have kindly suggested that you step away from the crack pipe.

Alannah was asked to speak last night at the annual Board of Director's meeting for The Children's Cancer Center to give a siblings perspective on what the Center has meant to her. If I had a nickel for every time I have sang the praises of the Center I would never worry about bills again! They have been a life saver, a God send and I can't imagine this time without the amazing staff and volunteers at the Center.

And yet, nothing I have ever said has ever come close to what Alannah said tonight. She was polished and composed and articulate. She was painfully honest and laid her heart and soul out there for a roomful of strangers to see.

The evening opened with Nikki Hawkins, a beautiful 13 year old girl who is a brain tumor survivor singing the Star Spangled Banner. Stunning!!

Then Eddy Kerchione who is home from Irag while his son, Angelo fights leukemia led everyone in the Pledge of Allegiance. He was so awesome and invited all the kids up with him.

Then Bob McNamara, a bereaved father, delivered a beautiful invocation.

Jamie Bridges is a mother of two beautiful little girls. Her youngest, Mattie is fighting a brain tumor. She spoke beautifully about what the Center means to her as a mom. She was honest and heartfelt and did a wonderful job.

Then, it was Alannah's turn. She was really nervous, but you couldn't tell at all to look at her. I am certain I am a bit biased, but I thought she did an amazing job. Though, I can see the nerves in her face here. She kept it together beautifully.

She took the stage, in front of a roomful of about 150 or so adults, 95% of whom she didn't know and had this to say:

"About seven months ago, doctors found a tumor behind my little sister Mandy's eyeball.

There was always a possibility of this happening. She's had neurofibromatosis since she was really little. I can remember being around seven years old and reading through a brochure on the coffee table with that long word on the cover. It meant trips to the hospital for periodic MRIs. It meant bottles of medicine lined up in the cabinet. It meant little brown spots called cafe ole marks on her skin. I never imagined what it would be like if a tumor ever did start growing. So when one did, I tried to pretend that the chemo was just one of those normal things. When something big like that happens, I implode. I'm an alone-crier.

The chemo made Mandy really touchy and angry all the time. She was scared and mad that she had to do this. People were poking her with needles or pumping her full of meds every time she turned around. She was mad that she couldn't go to school on or after chemo days, which meant missing field trips or class parties sometimes.

There are times, I have to admit, when I felt jealous. Not of the chemo, but of all the presents and attention, That's kind of juvenile and I'm embarrassed to admit that's how I felt, but it's true. At the same time it scared me. It felt like a funeral, when everyone brings flowers and casseroles. Everyone feels all sorry for you, when really that's the last thing you want. You just wish everyone would act normal.

But at the Center, everyone did act normal. Nobody was really happy to be there. Not about the reason they were there, anyway. But as long as that reason was there, it was nice to be at a place where everyone had that reason. It was really great to be there because Mandy could just be normal. She didn't have to worry about low blood counts or anything. Normalcy is really important to her. She always keeps her port covered and she didn't want to shave her hair when it started falling out, even though it was getting everywhere and itching her head.

I loved it there too because it made me feel like I was doing something. The emotion I hated more than anger or sadness was the feeling that I couldn't do anything to help. Even if it was only pushing kids on the swings until my arms were ready to drop off, it was better than nothing. That's why I like helping out at the fundraisers too, like the Relay For Life and the Cure Kids Cancer Challenge. I also feel connected while I'm there. There are all these people who know what's it's like, who really get it. Anyone can be sympathetic. Everyone is. But it's nice to have people who really understand.

My mom calls it the monster under the bed. She reminded me of when I was little and I was scared of the closet, because I thought nightmares came out of it. That's what it's like for her. But you have to look under the bed sometimes, because it's just going to fester and grow if you don't. For me, it's like a little box inside my head, filled with every possibility, good and bad. It's the same principle, though: I still have to open the box or it'll swell up until I won't be able to open it anymore. The Center makes sure I don't have to open it alone."

My pride runeth over...

Love to all~

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