Our Village

Last night I stood in my high school’s auditorium watching as people began to fill the seats in anticipation of Godspell, an encore show that Boonsboro High School Drama was doing in honor of our family, to raise funds for FamilieSCN2a Foundation. I could feel the buzz in the room, see my friends and family who came to support us, and as I glanced up at the screen that showed a picture of me holding my little boy, I was flooded with the memories of events that brought us to this place, where we have been so cared for and loved.

I thought back to the moment when I was sitting in a waiting room of a hospital in Baltimore holding Mark as he clutched his blanket, receiving the results of his ABR testing that measured his ability to process sound. We learned that he could hear, and as odd as it may sound, I was disappointed. I had prayed earlier that morning that they would tell us that he was deaf, and that it would be a less painful explanation for why he ignored us. Then I remembered the office visit where we were officially told he had autism. And finally the memory of being handed the SCN2a diagnosis, learning that autistic features are just one part of a larger, rare disease. The weight and gravity of this pulled me into a very dark place where I was angry and wondered what I had done to deserve this path in life.  My sweet, beautiful boy who we named after both of our fathers faced a life of intellectual deficit, lifelong autism, a variety of puzzling medical problems, and the propensity for seizures, which in and of itself could lead to a number of other catastrophic complications, including death. I’ve typed and retyped these lines several times and settled with what I included because there are no words to describe the loneliness and sadness we felt.

 

For those of you familiar with our story, you know that we quickly became connected with the FamilieSCN2a Foundation, found motivation to fight for a cure and the support we needed to dig ourselves out of our dark place. Our connection with the other families impacted by SCN2a lead us to our first large scale fundraiser, held last weekend. 500 people came to Middletown Community Park to show their love and support, and as the Color Dash kicked off, I was walking alongside Mark’s physical therapist, my children and our best friends, and I just began to cry because I remembered all of those lonely medical trips where we learned more and more troubling news, and I would have never imagined that my community would rally around us the way that they have. As we headed past each color station, I saw friends from high school band, family, co workers and parents of children from daycare, and I just felt so embraced. I knew that this day would be a day to remember forever and I was incredibly grateful.

 

 

Then on Tuesday night, I sat in my office at work waiting out the rain at the end of a long day and I received the following message from Mr. Bair:

Michael J. Bair

Angie…on April 28, 29, and 30th, BHS Drama performed “Godspell” to packed houses.  The play was such a success that folks have begged me for an encore.  I said that I would only do one if I could find a cause to support.  It feels like greed any other way.  I know we can pack the house again, and we will just be sucking cash from the same folks.  Instead, I would like perform the show as a fundraiser for your charity.  If you know of someone who needs immediate financial help with SCN2A, I could just as easily do that.  Regardless, I am on a time crunch, and if nothing else, we would like Ike and you to be our guest of honors, and perhaps, you could come up and share a little about the condition.  That’s not mandatory.  Just let me know ASAP please.  I must advertise immediately.  Blessings!  MjB

 

I was stunned, touched and overwhelmed. I didn’t think that anything could top the community love I felt at the Color Dash, but having a drama production at my Alma mater in honor of us and to raise money for the foundation, took the cake. The event was shared over 100 times on Facebook, the auditorium was packed, and about $2,000 was raised. But even greater than the donation that we are so grateful to receive, was how Mr. Bair and the cast embraced us and made us feel so incredibly loved. Godspell was quite the fitting show for what transpired last night. They showed us the love of Christ.

 “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me”. Matthew 25:40

I will always cherish the opportunity we had to pray with the cast before the show, and to share our story with a room full of talented students who were willing to do a production just one more time for the purpose of finding a cure for our son and other children who suffer from SCN2a. We know how much these productions suck the life of out of the cast, and understand how big of a deal it was for them to do it once more. And I will never forget receiving so many genuine hugs from the cast at the end of the show.

I love what they did, and how they did it. I hope that each and every one of them understands what a seminal moment last night was for us, and that they now have a place in our story.

As I write this, Mark is sitting next to me on the floor humming as he flips through the pages of his books, and I am envisioning the day that he will be able to read the words on the pages out loud, and we can savor the beauty of a voice that a whole village had a hand in bringing to life.