Food for Thought

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Food for Thought – October 21, 2014 Edition

To Siri, With Love - In the New York Times. If you read nothing else this week, read this.

Gus: “You’re a really nice computer.”

Siri: “It’s nice to be appreciated.”

Gus: “You are always asking if you can help me. Is there anything you want?”

Siri: “Thank you, but I have very few wants.”

Gus: “O.K.! Well, good night!”

Siri: “Ah, it’s 5:06 p.m.”

Gus: “Oh sorry, I mean, goodbye.”

Siri: “See you later!”

Maybe if You Ask Me – What Color is Monday

I need you to see him. I need you to help me bring the pieces on the board to life so I don’t reduce him to a match of gains and losses, forward steps and backward slides. He’s talking he’s talking now he’s stopped sleeping he’s riding the big bus but he always sits alone he decided to wear a costume only he wants to dress up as a woman.

What I Want to Say Isn’t There – Independent Living Centre

If you could be doing anything you’d like right now, anything other than sitting here reading this blog post, what would you like to do? Ponder that thought. Pick something. Anything. Now scroll down….

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So what have you been reading this week?

Night Rider

Aidan drove in the dark the other night.

Fast.

With wild abandon.

Garreth and Aidan had just picked Liam up from a school event and instead of heading inside for bed, Garreth decided to let Aidan roam. Aidan looked back once as if to say, “Are you sure you’re ok with this because I’m not afraid to hightail it outta here?”

Garreth stayed close for safety, of course, but always out of Aidan’s line of vision to let him feel alone.

Much giggling ensued.

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Sometimes I feel like I’m driving in the dark on Aidan’s medical journey. I’m a researcher and a note-taker and question asker so I don’t quite drive with wild abandon. Sometimes I have to work hard to shed myself of guilt. I give medical decisions the weight they deserve.  The darkness is less fear these days and more wondering. What’s out there and where exactly are we going and who will we meet along the way?

There is also, if not outright giggling, then at least deep gratitude. It may seem weird to others what makes me happy. I’m very excited to be on the cutting edge of science and to have if not a name than at least a gene to possibly explain Aidan’s medical issues. Something big is happening here. I’m incredibly grateful that our orthopedic surgeries are behind us and Aidan is using his new body well. I’ve learned that my marriage has a sweet spot and it’s during a medical challenge. Strange, I know, but I’ll take it.

And when I think about Aidan’s mobility, well, there probably is no greater joy for me than that. Damn that kid is smart. I believe there is a game of flashlight tag in our very near future.

And the laughter will be contagious.

PURA Gene Community

I’ve found community in many ways over the past several years and they’ve each been so important to me.

There were the medical moms who gave me information, guidance, and support. They taught me about seizures, sat with me during medical procedures, reached out to encourage me through the internet.

There were people who joined us in the trenches and came to our aid helping us raise money for an accessible van and then later to build an acccessible addition onto our home. These efforts took people of all kinds – fundraisers, letter writiers, cooks and carpenters, hope sharers and story spreaders. Every gift mattered.

I have writing friends, singing friends, reading friends, praying friends, talking friends and crying and laughing ones too.

There have been my people, the ones closest to me who listen when I get overwhelmed or join me in my dark humor and know when to let me wallow and when to help me problem solve.

It’s interesting to note that at the beginning of this journey with Aidan, one of my toughest challenges was feeling isolated, like I didn’t have a community. Without a diagnosis for Aidan, I didn’t quite know where to turn. Eventually, though, I realized I had more in common with families living with Down Syndrome and CP and autism than I realized. The specifics may differ, but I found people who deal with doctors and IEP meetings and therapists and medical equipment and all of the emotions associated with those.

And now I have an opportunity to expand my community even more. My doctor recently found three other families that have young boys with variants on their PURA genes, the same one as Aidan. We’ve agreed to have Aidan’s clinical information be part of a publication in a genetics journal in the hopes that doctors and researchers may learn more and other children will be found.

I sent my first email to one of the other moms. It’s hard to explain how excited I felt that we might connect. It’s interesting that we could be linked in such a foundational way, though that gene says nothing of the lives we’ve led, even though it’s been a life changer. We’ve waited 13 years for a diagnosis, and while Aidan still doesn’t have one, these findings could be a start. These three boys and Aidan may all have very different medical issues. In that way, they’ll fit right into this hodge podge group I’ve found myself to be a part of.

We started our search for community 13 years ago hoping for these three families and finding so much more along the way.

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