It's all about the Canaries

I read this great story about the coal miners in Pennsylvania from one of my favorite writers, Glennon Doyle Melton. As we all know, the mines are very dangerous because they are full of invisible deadly toxins. The Miner’s bodies weren’t sensitive enough to register the levels of poison so they often brought a Canary down with them. The Canaries body is specifically built to be very sensitive to the toxins in the mine so when the toxin level rose too high, the Canary stopped singing. If the Miner’s didn’t leave when the singing stopped, the Canary would die and shortly thereafter, so would the Miner’s. The Canary became the Miner’s lifeline.

I believe many of our kids are Canaries.

When a child has sensory integration issues due to a disability such as Autistic spectrum disorder, Seizure Disorder, Bipolar, Depression, Hearing Impairment, ADHD (which is just one huge sensory challenge), etc. the world can be very painful and overwhelming. Everything from sounds, lights, energy, and speech coming at them can be very difficult to sort though. Some kids are more efficient at adapting so on the outside they may follow the rules better, however sometimes there is still a constant underlying uncomfortableness they can’t put into words.

I don’t believe this makes them weak. I don’t believe it makes them so broken they need to be fixed. In fact, it’s possible they are the bravest of us all. It seems no matter how painful it feels, they just keep putting themselves out there over and over in the course of their everyday life. And what we all perceive as inappropriate behaviors could quite possibly be that canary losing its song and trying to let others know there is trouble. I guess the question is, are we listening? Or are we consumed with the fixing?

When you have a plant or a flower that isn’t growing, do we keep forcing it while we watch it continue to die a little death over and over hoping it will eventually adapt? Or do we change the environment so it can take root and flourish?

We as parents all want our children to be able to fit in and function in our community because we believe that will make them happy. We all want our children to feel loved and accepted. And I do believe we do need to help them learn to adapt to a certain extent so their attempts aren’t so painful. And when they finally uncover their passions, the path is open. However, if we are extreme and solely focused on making them acceptable, we may miss the gifts they are here to give us.

As both a parent and a canary, I struggle with this balance every single day.

Perhaps One Shared Root will be that special place where Canaries are safe to sing, a place where others are encouraged to listen. Who knows… it may just be the lifeline we didn’t even know we needed. 

Let Love Bloom

Last week was a painful time for our DMD community. Over five days, we lost five beautiful young men ending it with the loss one of our most well-known warriors, Darius.  For those of us parents who grapple with anticipatory grief on a regular basis, the search for our own answers or at least a believable spin becomes paramount for our survival. Or at least for mine.

After spending some time being still, this is what I heard…. perhaps the purpose of the great loves of our life are not so we will have them forever but simply so we will continue to grow from them. In looking for our farm for the lessons, I see annual plants which are so abundant when they impact the garden so richly, we wonder why they aren't meant to last. Unlike the perineal, they are only here for a too short season of our life. But when they do die off, they go back into the soil and create a richer more bountiful source for the next love to bloom. Maybe that’s love too.  Maybe love isn’t meant to stay the same, maybe it’s meant to elevate us, change us and make us richer for the next time.

I have certainly had some meaningful loss: my mother, my aunt, and several close friends. And with each heartbreaking loss, the love remained and made me able to love more deeply. I have no way to even begin to comprehend the loss of a child although I think of it often. All I can do is hope the love which has been so carefully cultivated, like the richest of soil, becomes so fertile the most precious of blooms are able to grow in its place. Hope doesn't promise, but maybe it's the fertilizer needed to attract the light. And we have to ask, why live in the dark when there’s an option of light? If we aren't planted in a space the light can reach, we extinguish all possibility for the perineal right below the surface, just waiting for permission to bloom once again.

Making Room for the Gifts

Thanks everyone for voting on the logo! Here is the final version we settled on. Thanks so much again to Jen Mileti at Vilocity! 

 After several meetings and no cooperation and avoidance from SUSD, we have moved on from the location we had our sights set on. Everything with this project has been this magical carpet ride with each opportunity presenting itself as we start to look for it. The Scottsdale Unified location was starting to feel like paddling upstream so we took it as a sign that it’s not meant to be. I could have done my usual advocating up the chain of command (I only had one rung to go), but I want this to be different. So many times in the past I made things happen rather than allowing them to happen. And I’ve begun to learn that the latter approach seems to have far more sustainability.

As soon as we let that go, some other options have presented themselves. We are investigating those leads and are confident we will find our home, one we are welcomed in with open arms.

I called in the troops Saturday. We still want to throw this modest fundraiser to get started with a small group of potential board members, partners and folks who have really shown interest. Our last window to have it before the holiday madness kicks in is November, which is coming fast. I was feeling very overwhelmed so I called some of my nearest, dearest lady bosses to come over and help. Once again, magic. That day we received an anonymous donation of $2500 to underwrite the event! 

That just blew us away. Speechless. Really.

We also got word that the fantastic caterer from Gertrude’s at Desert Botanical Gardens, who finds our project heartwarming, is donating her services and lovely faire. We are going to still have to scramble to host a warm farm to table dinner to launch our video & crowdfunding campaign but it will be so interesting to see the final result. 

Also, this week I’ll be cleaning up the final draft of a letter of intent for another big grant ($130K) due Friday. It’s been such a privilege to work on this project. I’m learning so much. And even though I’m donating all my time in the midst of 2 other jobs and kids, I still feel calm about how it’s coming together. Much like the experience in the Grand Canyon, this seems to be happening through me rather than because of me. I put in the hard work hard, do my best, but comfortably let go of the outcome. The results seem to have their own life.

When these ideas come clear, evidence is all around perhaps this a much more graceful way to navigate through the rest of my world as well….getting out of my own way. Making some room for the miracles and gifts.