Just the Beginning

Before I smashed down Aidan’s bedroom walls in anticipation of turning that space into an accessible bathroom, I contacted my friend Michelle, a Seizure Mom, who has been very important to me on Aidan’s Epilepsy journey. She’s more experienced and knowledgeable than me because her son Miles has Infantile Spasms (a specific kind of Epilepsy) and Down Syndrome. She listened to my new level of fear, fed me information, and even offered me rides to the hospital. She became my community. I asked Michelle if she wanted to contribute some big bad words for me to smash to smithereens, words like refractory, ACTH, and intubation. It was incredibly therapeutic for me.

Bedroom Demo 047

Michelle shared her Epilepsy story on my blog to help raise awareness about this devastating disease. Michelle and her husband Stephen brought their boys to our Open House. They got it. They knew instantly how accessibility would change our lives. Miles uses a wheelchair too and they live in a beautiful 1770 colonial home.

Miles visiting with Garreth at our Open House

Our Open House was a day of great celebration; a day to give tours and explain what had been done and why it would be useful; a day to step back in awe of what had been accomplished. Since then, we’ve thoroughly enjoyed just living in our home. It’s been nice to not have piles of construction stuff everywhere. The mess is all our own now. I slept hard for a few days after the Open House, just trying to absorb the emotional and physical intensity of it all.

The following week I went to visit Michelle. Miles had just had a surgery similar to the one Aidan had this winter. I brought them a meal; it’s a little something I can give. In that visit, Michelle started asking me about Jason Lajeunesse, the contractor for our project. It was a joy for me to recall his dedication, commitment, expertise and excellent reputation in the building community.

Michelle’s response stunned me speechless. Jason had contacted her and said he would like to donate his general contracting skills to their accessible remodel project.

Take that in for a minute. I napped for three days trying to find my footing again and doubting that anything this amazing could ever happen again in the history of the universe. Meanwhile, Jason was doing it.

Can I tell you how excited I am? I’m excited that Jason got it, really really got it; that this remodel is changing the way we live. I’m excited that Jason didn’t run screaming from the experience of working with both highly skilled and inexperienced but hardworking volunteers. I’m so deeply excited that Miles will have an accessible bathroom. These are my people and I know the blessing of being able to shower my child without risk and I so want that for them. An important, medically necessary task that we all take for granted.

There’s so very much that I learned during our project and many memories that I will treasure forever. Here’s a big one that I repeat any chance I get – everyone has something to give. Everyone. Our building project took many kinds of gifts – money, skills, materials, food, sharing our story, time, encouragement. There was room for everyone. I like to think it changed people who were part of it.

Are you ready for the ask?

I would like to ask you, my people, who gave so generously to our project, to consider giving to sweet Miles.

The very first thing that everyone can give is your time to read Michelle’s blog and find out more. Then follow her blog so you’re updated as to what is happening. And if you need a little more encouragement, go check out her Contributer’s Page. Many of the contractors who worked on our house are working on theirs. That’s simply amazing to me. The next thing you can give is a click of a button – share their story. Post it on FaceBook, send out an email sharing your experience with our project and invite your friends to help Miles.

Nothing is too small. Here’s what I’m planning on doing this week. I’ve invited some people who worked on our house to share their story so we can all appreciate the ripple effect of giving. Please keep your eye on this blog this week. I will be cooking for Miles’s project, Garreth will be building, and I, hopefully if Michelle is feeling brave, will help her organize (and pitch) their stuff.

Yes, we’re enjoying our house and yes, accessibility is changing Aidan’s life, but it’s always been about more than building a house.

We’re continuing to build community and we’d like you to be part of it.


About Heather Bowie

I’m the mother of two wonderful boys and have been married almost 20 years to an amazing Irishman I met in a castle. Our oldest son Liam loves to read and run. Our younger son Aidan loves to drive his power chair and socialize. Aidan has a rare genetic disease (PURA Syndrome) and Epilepsy. This blog was birthed out of the desire to tell our story, and in doing so, appreciate the journey.
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