Size Doesn’t Matter

Meet my brother-in-law Bill the Fabulous. We’ve had family SWAT weekend for years now. The hosting family comes up with a serious Fix-It list and feeds the family and we get stuff done. We’ve built stone walls and decks and fixed windows and basements etc. Bill is our family bathroom specialist. He’s also a professional writer and his message today is one you don’t want to miss.

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In the act of giving, what you give, how much, or how frequently doesn’t matter. Whether you click a link and let PayPal anonymously wire $25 into someone’s half marathon fundraiser, run that half marathon yourself, or dedicate six months of your life to a cause, the underlying fundamentals of what you enable are the same.

Giving is a judgement-free zone, but sometimes we’re our own worst critics, frozen by the philanthropic version of analysis paralysis. What’s $25 going to solve? And is a monetary donation somehow less meaningful than volunteering in-person or donating specific materials? How is my time, in the end, going to really contribute anything?

Those are hurdles that actually twist the act of giving from selfless to selfish, because, really, it becomes about you, not the folks who have to do the asking and thoughts like those certainly trample your budding generosity.

Sometimes, too, giving means participating, getting close and having a good, long look into someone’s personal space.

Let’s apply this to, say, a major home remodeling project. A significant undertaking, right? Beaucoup bucks, specific skill requirements, a seemingly overwhelming task involving a crowd of specialists.

But think of the opportunities here. I have, because I was lucky enough to participate in one of the most phenomenal events I’ve ever witnessed—the reconstruction of the Bowie house .

Folks gave money, they gave supplies, time and baked cookies. They built walls, babysat, ran errands, painted and swept up the sawdust. There were shocking acts of surprising kindness appearing out of nowhere all the time, from close friends, family and strangers.

And, in a feat that’s as impressive as the coming together of the community that rebuilt their house, the Bowies gave themselves over to it, accepting the heaping kindness and living with a revolving door of helpful, cheery passers-through armed with hammers, paint brushes and cookies, stopping by for a few hours here, half a day there and leaving behind cookie crumbs, a new floor, mowed lawn, painted wall or reshingled roof.

But the beauty is in the small things, too. And that’s where you come in.

Because, amazingly, the Bowie House experience has spilled over into another project The BARN Project. And you lucky folks familiar with the joy and satisfaction that came out of creating an accessible home-space for Aidan? You get to do it all over again. Anyone else who might be reading this, now’s your chance. Nothing is too big or small to give.

The heroes are the folks who do the ‘big, complicated work’ of electrical, carpentry and plumbing. The other equally heroic folks are the ones who take the kids to the movies and give mom and dad some quiet time, or take mom to get her nails done. Or hammer those other nails and tidy up the yard. Or drop off a sixer for dad or bake some nachos supreme.

Because that nail you hammered in a little bit crooked? That one measly nail? That’s your nail, dammit. And it’s holding two pieces of wood together that are holding up a roof. Of. A. House. Same thing with that lasagna you baked—it fueled someone who built that roof. Of. A. House. Ditto for that sort-of sketchy paint job, because, honestly, no one cares about that smudge on the ceiling—you just helped build a damn house. A house with space that instantly lets a boy unfurl his wings of mobility.

Don’t get in your own way. What you give matters, no matter how small or seemingly insignificant. Because in the aggregate, even the little contributions are like tiny keystones that not only hold together a physical structure, they form the foundation of humanity. How’s that for high drama? But it’s true. Just because you can’t pay for the entire lumber supply or single-handedly re-frame the new living room doesn’t mean you can’t have a dramatic impact on someone’s life.

And, as my wonderful sister-in-law has said many times, events like this become even bigger than the already significant act of helping a family. It propagates—like bunnies. It binds community in a church, town or even more broadly.

  It’s like World War G (G, for ‘giving.’ Get it?).

And from there, it spreads. From Aidan to Miles.

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I’m very excited to be attending the BARN project kickoff event tomorrow morning. I will be photo fabulous and press ready because when giving propagates like bunnies, I want in on the action. Please consider joining us on this project. To learn more about Miles and his family, go here.

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Everyone Has Something to Give

Meet my friend Amanda. We’ve been through a lot together and she’s been a constant encouragement to me. She also happens to have a fabulous eye for color and design. Her entire family contributed in many ways to our building project. Please read about her experience and consider getting involved in the BARN project.

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Heather sat on the loveseat in my living room and told me to brace myself for some exciting news. I did brace myself, because with Heather, that could have meant anything!  She said she had been approached by two friends who had seen the limits their house put on Aidan’s choices and mobility, how unsafe it was for him to use the tub and toilet, and how much more difficult the current layout of the house made it for Heather and Garreth to care for him. She said they were going to change that. Okay…..but how?  She told me that they were teaming up with a contractor to make their house accessible for Aidan and that it would all be done through volunteers, fundraising and donations. Okay…..but how? I’d like to say I instantly bought into the idea, but I have to confess, I thought it was a little crazy. Winter was coming, Aidan was scheduled for surgery and this was a monumental undertaking that would be costly and need professionals!  However, these friends had seen a real need and I wanted this to happen for the Bowies, so I put aside my doubts and buckled up for the ride.

Everyone knows the saying, “It’s better to give than receive.”  That certainly is a nice attempt to ward off selfishness, but it’s also actually true. What the “giver” soon discovers is that they are actually receiving things they never imagined. This was our families’ experience with the Bowie House Project and here are a few of the blessings we received and things we learned as a result of being a part of this amazing endeavor:

Big things can happen through small steps of faith.

We knew the need was there and that it was big, but I mistakenly thought it would take something big to come in and take care of it.  I thought the Bowies needed “ABC’s Extreme Makeover Home Edition” to swoop in and fix it. What’s amazing, though, is that a lot of little individual steps of faith do make something big. We started to think about what was possible if we just took that first step instead of focusing on how overwhelming the overall task or obstacle seemed to be.

We all do have something to give.

This was a great chance for our whole family to give together.  Brian, being an electrician and all-around handy guy, had an obvious gift and he enjoyed seeing that he could use his talents and skills for something more rewarding than a paycheck. We loved seeing our 7 year old, Caleb, with his hard hat and work gloves on lugging scrap wood out to the dumpster and hearing that he had fallen asleep at night thinking and praying about the project. Our 4 year old son, Ben, seemed to thrive on cheering up and entertaining Aidan after his surgery, especially when he got to be Robin and see his mom dressed up like Batman on a special visit to the Bowie House. Our 14 year old, Abigail, prayed for the project and stepped-up to take care of her brothers when needed.  I loved being the interior decorator, bringing food and supporting the family through Aidan’s surgery and recovery.

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It was also fun to see the variety of people who joined the project and the unique ways they contributed. There were people that seemed to love the demolition part, others that made sure there was food for the workers and those that came in to clean before Aidan came home from the hospital. The skilled craftsmen that participated seemed to thrive as they did a job that they do every day for a new and exciting reason.

Sacrifice is good for many reasons.

We know it’s good to sacrifice indulging in a high calorie dessert in order to maintain a healthy body. Maybe we sacrifice getting to spend time enjoying our favorite hobby, so that we can play a game with our kids. This project encouraged us to look at the idea of sacrifice in a deeper way. What do we sacrifice or don’t we sacrifice and for what?

When it comes to the Bowie House Project, time was our biggest sacrifice.  We are a busy family of five and Brian is self-employed, so his work schedule fluctuates greatly depending on how many projects he has. Wouldn’t you know it, a slow work period ended right as the Bowie House Project ramped up. This meant that he would be away from the family on weekends after working long hours all week. This was difficult, but was a great opportunity to discuss the concept of sacrifice with our children. Daddy wasn’t sacrificing family time to improve his golf game. It was a great exercise in thinking beyond our own desires, wants and needs and putting another family first. I can tell you that it would have been very easy to focus on what we needed to get done around our house, or how we’d like to make plans or just have a relaxing weekend. I’m thankful that this project helped us to look beyond ourselves, if even for a short amount of time, and that at times it truly felt like a sacrifice that the whole family made together.

It’s not easy to be the receiver, either.

It was a blessing to witness how the Bowies received this gift. Can you imagine people doing this for you? How would you respond?  The Bowies responded with grace and humility. They made sure that everyone involved knew what this transformation meant to them in very specific and creative ways. They were grateful, but didn’t want this project to simply be about their house being remodeled. They knew that this had the potential to mean so much more to so many people. They inspired people to take this further and to see that their situation is, unfortunately, not as unique as some may think and that we can make a difference together. 

This project was not always easy on them. Anyone who has been through a home remodeling project knows that it can be one of the most stressful times in your life.  Then, add in a major surgery for Aidan with his recovery including being immobilized and house-bound for six weeks during the construction. Walking with the Bowies during this part of the project showed us the challenge of being weary, yet grateful at the same time.

What is our community?

Help the Bowies? That decision was easy for us since we love them dearly!  Heather and Garreth are some of our closest friends and our children muckle on to them every chance they get. They have been the people we could call at 2 a.m. (and have) and have helped us navigate the road of having a special needs child with their support, encouragement and wisdom.

However, the Bowie House Project challenged us in an unexpected way. What if it hadn’t been them with the need? What if we didn’t know the family at all? As we participated in the project, we were overwhelmed by the people we met who had come onboard without knowing the Bowies at all. They heard about the needs of a family and were moved to donate money or supplies or to volunteer to swing a hammer, paint or share expertise.  These people didn’t have the benefit of knowing how amazing the Bowies are and yet they eagerly made a sacrifice.

Heather seemed to develop an affinity for the word “community” during this project.  She often talked about how this was such a great example of what a community can do when they come together. I had never really stopped to think about what my “community” was comprised of, though. Was it just people that I had an established relationship with or live within a certain geographical area or attend the same school, church or place or business?  Or is it bigger than that? I think maybe it is. I think community is built, expanded and strengthened when we step out of our small, safe, known circle and respond to someone in need. It may seem awkward at first. It may be uncomfortable.  It may require sacrifice, but you will be a blessing to someone and, I guarantee, you will be blessed, too!

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You have not missed your chance to experience community in this way. Get involved with the BARN project and help our friend Miles know the freedom and safety of accessible living.

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Every Gift Matters – Even A Smile

I’m excited to introduce you to Rebecca Patenaude, an artist who married into my family not by blood but still family. Rebecca and her daughter Rori and my Ya Ya Jen came up to paint the mural that for me became the emotional centerpiece of our remodel project. The mural has wheels because wheels have changed Aidan’s life and who says you can’t put wheels on a wall? I wrote about it here. 

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Mom: What do you think it means that everyone has something to give?

Hattie: We can do somethin,’ you know- like, helping out. I can put my shoes away.

Rori: NO! HATTIE- she means give something up! Like whining. Right?

Mom: What about giving something to others by just being you?

Rori: Like Aidan, he reminds me to smile…. by just smiling.

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I am the mother of two young girls. There have been times when attempting to teach a lesson, to impart some kind of wisdom, or give a glimmer of global responsibility has been, well… less than effective. Occasionally selfish, these little souls I created sometimes have a hard time seeing the bigger picture. There are the change collections for Heffer International, donations to local charities, and trips to drop off blankets at the animal shelter; but these actions are lost without the ability to understand the world we live in. I want my girls to know that we as a family, as a community, and as members of this world need to take care of each other. I would love for them to know that you don’t always get what you want. I would like for them to know we are all not dealt the same hand.

So, how do we give our kids these opportunities? The answer is; we let them be kids. We introduce them to other kids from other places and other ways of living. We make them introduce themselves and then we back off. We throw away all of our expectations and we let them play. Somewhere in that magic, simple, unfiltered time, kids get the bigger picture. They make the connections and they live the lessons.

I had the amazing opportunity to come paint a mural in a newly created bedroom for our friend Aidan and his family. Aidan has the most beautiful blue eyes, a giggle to beat all giggles, and he can play fruit ninja like a boss. Rori is eight and when we went up to Maine from Connecticut she was a little frustrated that she wouldn’t know anyone. While I got to paint, zen out and commune with friends in my own way, Rori began to give in her way and Aidan in his. Two days later there was a wall covered in love and stories and hope, and Rori and Aidan were playing and reading and fruit ninja-ing like old friends.

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Differences were overcome. Rori and Aidan became fast friends because sometimes it really is as easy as being together. We all have something to give, and sometimes it starts with a smile.

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Because of Miles’s devastating seizures and powerful treatments, he lost his ability to smile for a long time. His family does not take that simple gift for granted. Miles’s seizures are better controlled and his smile is back. To learn more about Miles and the BARN project read here.

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Everyone Has Something to Give – Even Kids!

It makes sense that a building project would take money, material, and professional labor. But kids? Can kids build a house? Build community?

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Yes. Absolutely.

I love it when kids help other kids. They’re learning to be thoughtful and kind, to put others first and to work hard. There were several kids involved in our building project. Liam learned some new skills. His cousins came up to work and play. Our friends brought their kids to help out with them. We had kids painting and cleaning and building and cooking and having fun. It’s a teachable moment that’s just too good to pass up.

Aidan’s friend Mackenzie came to work on the house. I asked her to answer a few questions about working on this project. Italics are my two cents.

How do you know Aidan? 

I know him through school and because we are family friends. I’m very excited that MacKenzie is part of Aidan’s lunch group at school this year.

What kind of jobs did you do at the Bowie House?

I helped tape the house wrap on by standing on a really high ladder. Me and Aunty Sue were putting up the paper on the house and since I was really high up I had to use a stick to tape the paper since it was so high. I also helped take debris to the dump. Sometimes I sat on boards so Aunty Sue could cut them.  MacKenzie and her brother also made short work of taking down our fence. It seems she loves smashing stuff as much as I do.

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What do you understand about how the addition will help Aidan?

Now there aren’t so many bumps so he can move his chair around smoothly. The shower is bigger so he can move his chair around in it.

What would you tell other kids about working on a big project?

People were able to get a lot done in one day and it is a lot of work. It is a lot of fun if you know the people you are working with and you know it will make a big difference.

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Mackenzie, and all of our wonderful kid helpers, has something to give. So do you.

Would you consider joining us in giving to the BARN project? Find out more here.

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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.

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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.

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Thank-You!

What do you say when someone builds you a house? It’s seems preposterously small to just say thank-you.

I suppose I could write it in the sky in billows of airplane smoke to show the magnitude of our gratitude; or I could cry big sloppy tears to express the depth of this feeling; I could tattoo my arm to show you this isn’t a passing thought. Would you hear me better if I wrote an acrostic? You know – T is for the time you gave H for all the hard work, A for accessibility and N for… never mind.

This project took many hands and many gifts. We’re thankful for every last one of them. It would not have gotten off the ground without the three team leaders. Sue, like many people who come into our lives, asked how she could help. She was persistent and did not go away when I said, “It’s all good. We’ve got this.” She finally got out of me that the bathroom was a death trap of potential brain injury for Aidan and wouldn’t accept that it was a problem without a solution. Sue approached Talley, who with her bulldog tenacity said, “Oh, we’re gonna fix that.” She used her enthusiasm and networking skills to get people involved. Talley approached Jason the Builder to get some ideas. Not only did Jason see a solution to the problem, he committed himself to the project. Unbeknownst to any of us, Jason had been wanting to use his professional skills to give back to the community. Because of his stellar professional reputation, he was able to bring many contractors to the table. Sue, Talley, and Jason birthed this plan, invited you to be part of it, and saw it through to the finish, this amazing finish, and we are deeply grateful to them.

I also want to say thank-you to two people whom I actually stand here to represent. Liam, like me, would be completely happy to be locked in a room of books forever. He was flexible in the chaos, helpful with construction, and respectful to people who came to work. Since teenagers aren’t always known for those qualities I want to say thank-you to Liam for rising to the occasion. And thank-you to Garreth who simultaneously used his CNA skills to help Aidan recover from surgery, his finish cabinetry skills to work on the house, and his amazing husband skills to keep me sane. While you may have heard the unhelpful and inaccurate statistic that couples raising a child with a disability get divorced at an astronomical rate, all of our numerous pressure tests have made Garreth and I more unified.

This building project re-inforced some essential truths that I’ve learned mostly from raising Aidan.

First, see the possibilities. This project started with me NOT seeing a solution which is why I’m so glad that Sue, Talley, and Jason did. We hit a few snags along the way and had to be flexible. At times this project felt too big to finish. This was no easy task but we stand here today with it completed because you saw the potential for safe, accessible housing for Aidan.

Second, humor is a survival technique. Those of us affected by disability often joke about things that may seem inappropriate. There has been much laughter in this project. Yes, Garreth answered the door in his underwear at 10pm after he had just come home from the hospital, and yes, I sang me some Neil Diamond karaoke on the stage of my open living room, and yes, what happens at Lowes, Sue, stay at Lowes.

Finally, and most importantly, everyone has something to give. Everyone. This project took money, time, professional skills, sweat equity, food, publicity, encouragement, and so much more. There was room for everyone. We are grateful to each of you. I hope that you walk away feeling valued and appreciated. Take this moment to recognize how good it feels to say, “I participated. I gave. I’m part of something.” You can find someone who may not have that experience and create a space for them to belong.

So instead of a tattoo or sky-writing, I’ll say thank-you by telling you what you really gave us. Yes, in the most foundational sense, you built us a house. What that really means is that Aidan is safe in his own home, especially the bathroom, which is essential to daily living. He is also able to go wherever he wants in the house. Aidan can now maneuver his wheelchair around freely. He can go bug his brother, wheel away from his dad, take stuff down from the tables. You gave him independence.

Lastly, and most importantly, you showed us that we aren’t alone. Raising a child with a disability if often isolating and overwhelming. It just is. There was one moment of this project that captured the essence of this gift for me. It was Saturday March 9th. Aidan had just had major orthopedic surgery and Garreth and I were at the hospital with him. Being at the hospital is like being on another planet. We were far removed from the house project. Garreth and I were sitting in the hallway outside Aidan’s room, hoping that he would sleep. We were watching his monitors because his heart rate had been low. The alarm for the entire wing was right above our heads. We hadn’t seen fresh air or real food in awhile. We were anxious, stressed, and tired. This is our medical journey, the one only we as Aidan’s parents can take with him. Garreth and I sat together looking through the photos that Sue sent us from the day. There had been blue skies, sledge hammers, a feast, and smiley happy faces here at our home. It had been another productive work day. Because you were here, lifting this piece of our burden, we were free to focus on Aidan’s immediate needs.

You built this house. You built this community. We stand here humbled, grateful and amazed.

Thank-you.

 

You can continue to follow our journey at Team Aidan.

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Count Down

We have one more week until Open House and the details are getting done. While Garreth and Sue have been working on finish construction stuff, a door handle here and a piece of lattice there, Talley has been getting her Southern Hospitality on, and I have been getting crafty and homey to welcome you. My craft skills are nil but I did bust out some construction paper so you won’t want to miss my little project. It’s educational.

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We’re looking forward to thanking our community on Sunday and we’d very much like to see you there. So who should come?

* Everyone who made a monetary donation

* Everyone who gave their professional skills and manual labor

* Everyone who cooked a meal

* Everyone who donated material

* Everyone who held down the fort so their family could help out

* Everyone who encouraged us

* Everyone who shared our story

* Anyone who has questions about what accessibility looks like

That’s YOU! Please join us next sunday from 10-2 for an Open House to see what building community looks like.1074181_194007110761770_1555694078_o 1077140_194007134095101_1939083556_o

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