Sometimes I wish Madison had a “ribbon.”

There are days that I wish Madison had an awareness “ribbon.”

I mean there are awareness ribbons for autism and “Go Green” and colorectal cancer (which is a brown ribbon…really?) and GERD and even a ribbon for fireworks safety. Heck half the NFL was wearing pink shoes on Sunday.

But interestingly enough, there is no ribbon for what she had, one of the first known cases of  “when she had her first ear infection a crazy germ somehow jumped into the lining around her brain and before you knew it she had bacterial meningitis and next thing you know she had significant brain damage, a brutal seizure disorder, and a boatload of other problems.”

Forget the ribbon, that long name wouldn’t even fit on a bumper sticker or T-shirt.

Today I am playing golf in a fundraising tournament for BrightStone. They are a great group that provides work and social support for developmentally disabled adults. And whenever I get with a group like this the conversation usually turns to “So tell me about Madison.”

And it is in moments like this that I wish that I had a “ribbon” to tell them about her. Because frankly whenever I launch into the “when she had her first ear infection a crazy germ somehow jumped into the lining around her brain and before you knew it she had bacterial meningitis and next thing you know she had significant brain damage, a brutal seizure disorder, and a boatload of other problems.” diagnosis, people’s eyes start to glaze over.

It’s not they are not interested, it’s just that it is a lot to take in.

We live in a world where people, me included, find it easier to put people in a box or tag a ribbon on them.

We like to make things easy to understand, simple to digest, just the talking points please.

It doesn’t work that way sometimes.

And since Madison is one of the first to ever suffer from the ravages of  “when she had her first ear infection a crazy germ somehow jumped into the lining around her brain and before you knew it she had bacterial meningitis and next thing you know she had significant brain damage, a brutal seizure disorder, and a boatload of other problems” she does not have a ribbon.

There is no “box” for her.

But boy oh boy is she is an amazing person.

She loves to sing, and watch movies, and do puzzles. Lots of puzzles. 100-pieces. And she laughs out loud (the biggest, loudest belly laugh you have ever heard) when she watches The Backyardigans. She can be stubborn and moody and selfish. (She is a 15-year-old after all.) But she also will work for weeks making dozens and dozens and dozens of pictures, to give as gifts to all her “friends” at Disneyworld and The Nick Hotel.

Madison loves to play”bat” in the backyard and chase the dogs around the den. She loves pizza and ice cream and Dr. Pepper. (She is a 15-year-old after all.) She is a whiz at Candyland and “Uncle Wiggly” board games and likes to play Dora and Diego on her “Orange Game” before bedtime. She has littered the floor of her room with the hundreds of books she likes to read and a weekend is not complete if she and I do not get to the library and the Tiger Store for an Icee.

She does struggle in school, working at a lower elementary school level. And those seizures, oh those blessed seizures that are the hallmark of “when she had her first ear infection a crazy germ somehow jumped into the lining around her brain and before you knew it she had bacterial meningitis and next thing you know she had significant brain damage, a brutal seizure disorder, and a boatload of other problems.” I am not a fan of those seizures. And to quote Madison, “Shoo seizures. Shoo stinky seizures.”

There is a lot to our sweet Madison. Much like there is much to all of us.

Come to think of it, I’m glad she doesn’t have a ribbon. I don’t want people putting her in a box.

I love to tell her story.

I love to tell people about how she daily overcomes “when she had her first ear infection a crazy germ somehow jumped into the lining around her brain and before you knew it she had bacterial meningitis and next thing you know she had significant brain damage, a brutal seizure disorder, and a boatload of other problems.”

I love to tell the story about how she painted a picture for me that started a whole art company.

I love tot ell the story about how faithful and true God has been, answering every prayer and more. Especially the one I prayed in the darkest hours of her illness, when I begged God to just “give her joy.”

She is much too complex to be limited by a color or name. Much too awesome to be confined to a color.

She is Madison.

And that is just right.

(if you want to support Madison and all of her out of the box friends, you can do that at my fundraising page for the BrightStone event.)

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Posted on October 4, 2011, in Dad stuff, Uncategorized and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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