Motley Crew

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We appeared to be a motley crew at first; two middle aged moms, a young girl, a teenage boy, and an older gentleman. And yet we’d all had our lives changed by some of the same people.

Aidan and I were in the waiting room at the orthotist’s office anticipating new foot braces and a lift to eliminate his leg length discrepency. In walked a young girl with a tiny walker and pretty pink glasses. She and Aidan sized each other up. Aidan was certainly familiar with her walker, having one of his own yet much taller. He gave her a big smile. The girl’s mom jumped right in with introductions. She spoke directly to Aidan, asking how old he was. She encouraged her daughter to tell him her name.

I’ve received several encouraging emails recently relaying to me that people feel more comfortable interacting with people with disabilities after having read my blog and knowing that “hello” is usually the best place to start. This is why I write. With the flow of conversation in that waiting room, I understood the seeming awkwardness is easy for us because we’re in it, surrounded by the need to direct and facilitate conversations all the time. It was nice to have it feel so natural.

This sweet girl received her new glass slipper, just like a princess. No strange, medical apparatus in her mind. Just a very special shoe that makes her a very special girl. I so want her to remember that different can be wonderful and every special girl can be a princess if they want to.

The mom and I started talking about our medical teams. She prefaced by saying she has the best team ever and when she named exactly the same people on our team, I knew she was right.

Yes, this one taught Aidan how to walk; one foot in front of the other for months training his brain that this is how you do it. She changed our lives.

Yes, this one gave Aidan independent mobility by promoting his powerchair driving. She changed our lives.

And yes, this one we trusted with difficult surgical decisions, and he gave my son a new body. He changed our lives.

Into the room walked an older gentleman with one leg and a walker, just like the princess’ and Aidan’s.  Aidan stared. The little girl asked her mom why he has one leg. She didn’t skip a beat. “I don’t know. Would you like to ask him?”

The gentleman sat down and told us his story. He was at the orthotist today to receive his new prosthetic leg. I’m not sure Aidan and the princess knew what to make of it all but they certainly appeared willing to receive this important information.

The UPS man walked into this small office and patiently maveuvered his way through all of our wonky selves, marking this exceptional moment as typical in our world. We all went our separate ways.

Aidan and I headed into our appointment. What has always been somewhat routine now felt so important. Our orthotist has used the perfect balance of science and art for years to help Aidan become who he is. Aidan is a walker. He needs these braces to walk. My boy walks. He drives too. It’s all quite amazing.

As we finally left the office, I glanced at the closed door, the one I knew had the parallel bars in it. I noticed the other orthotist enter with a prosthetic leg. I’m sure there was a healthy amount of anxiety and excitement in that room. Quite possibly there was pain or discomfort as well. But I had goosebumps knowing what was happening. In the course of my very mundane day, a life was being changed.

A princess, a teenage boy and a man with one leg walk into an office…..as they have so many times before….and bit by bit, then all of a sudden, their lives are changed.

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For our nurses

To the ones who rocked my baby when I slept….

To the ones who came into the room when I was crying and offered a kind word, their own story, and a break….

To the ones who asked questions and really listened…

To the ones who took the time to explain….

To the ones who took silly, ridiculous pictures of my child wanting to bring a smile to my face…

To the ones who were impressed with my binders full of doctors’ notes…

To the ones who notice and remark on my son’s accomplishments…

To the one who appropriately and professionally kept the doctor and the ventilator away from my baby…

To the ones who filled my going home bag with hospital goodies….

To the ones who taught me how to take care of my son post-op…

To the ones who made the phone calls and got the equipment where it needed to be….

To the ones who work in schools and communicate so well…

To the ones who whispered, “get a second opinion”….

To the ones who saved my child’s life by listening to their gut….

THANK-YOU!! EVERYTHING YOU DO MAKES A DIFFERENCE!!

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Seizures Suck – In Case You Forgot

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November is Epilepsy Awareness month. I don’t want it to be a competition between diseases and who makes the loudest noise and has the sexiest celebrity advocates and gets the most funding. Let’s cure breast cancer. Really. Now. While we’re at it, let’s cure Epilepsy too. This post should be full of helpful information to make this awareness month useful.

But I’m tired and don’t have it in me at the moment. Maybe later.

Right now I just feel like re-iterating that I hate seizures. I can put a positive spin on just about anything….except seizures. I hate that they’ve stolen hard fought for skills from Aidan. The ability to sit independently and eat independently. Gone. I hate that I have to ride a crazy merry-go-round of medications. I hate that Aidan’s first seizure drug turned him into a zombie and that his latest one made his seizures worse. Yes, worse. And it tasted like sour milk too. And the five medications in between have just done nothing. I hate that his seizures were so weird that it took me two years to figure out what they were. A little twitch? A freaky laugh? Jiggly eyes? Shaking hand? All seizures. I hate that Aidan’s seizures, in the big scheme of Epilepsy world, are not a big deal. I’ve never had to watch him turn blue, not because of his seizures anyway, and I’ve never had to take him to the Emergency Department, and I’ve never had to administer his rescue medication. I hate that I have to carry rescue medication and be ready at a moment’s notice to save Aidan’s life. But somehow, they really are a big deal. They’re jacking with his brain, which is an already compromised and very important part of his body. I hate that Aidan has bitten his fingernail right off from having his hand stuck in his mouth during a seizure, and he makes a scared helpless face because he knows it’s going to hurt like hell and there’s not a damn thing he can do about it. I just have to let it happen. I don’t like to complain to the other Seizure Moms who have it so much worse, yet I’ve been embraced by those very people because they too know that motherhood isn’t a pissing contest of heartache and victory. I hate that seizures make me use strong language like hate, and um, maybe other words too.

But November is also the month of Thanksgiving.

In a weird way, I’m thankful it doesn’t mean I have to give up hating seizures. I’m thankful that I’m actually not consumed in a moment to moment way by Aidan’s seizures. I’m thankful that Aidan has so much to celebrate. I’m thankful that there are good doctors researching medical marijuana. I’m thankful that my life is about more than just seizures. I’m thankful to be surrounded by a knowledgeable community of supportive people. I’m really thankful for other bloggers who share their stories.

I’m thankful to live this life of balance, where gratitude can live in this reality, where I can hate seizures with the same voice that I count blessings.