There are few gifts greater than the gift of listening, really listening, to someone whom most people don't want to hear. People who live with disabilities and their family members typically walk a lonely road. People may be afraid to ask, or don't want to hear the answer to the question, "What's it really like day to day?" But when someone asks that question and then listens deeply, God's holy love pours out in the speaking and the listening.
Mostly, I'm writing this week's blog as an invitation to listen to one family who can speak articulately about living with disability: The Pot Family. Ralph and Sara Pot and their four children live in the Niagara peninsula in Ontario Canada. What distinguishes their life from most other busy young families is that their two youngest children were both born with an unspecified syndrome that has resulted in their having significant medical needs and developmental disabilities. Through Sara's lucid prose, her readers get a glimpse of day to day life with disability, and especially see the vital importance of the love of God and community in the Pots' day to day life.
You'll see some great, and sometimes funny, photography too and sometimes read insightful personal and theological reflection like the example below posted August 20, 2013. Sara asks herself why she blogs, then answers her own question:
It is cathartic, sorting through my emotions. Welcoming through birth the unexpected - such as our two youngest in 2006 and 2009- shook the confidence and identity of whatever I thought I could do and whomever I thought I was. For some reason still now, there seems to be more tension inside my heart when I am with people who knew me before the birth of Rachel. It's as though there are two of me - the person I was prior to 2006 and the person I am now... and those two me's don't know each other very well.
When I talk with parents who share similar experiences, I suggest that it is like a season of post-tramatic stress. The length of that season (and its reoccurrence) depends on the circumstance and person. Sometimes, the posts on the blog let me step back and tell myself, "See, we are still living and finding joy. You're going to be okay."
Maybe I am afraid that if I don't share a bit of our story, people will forget. From the moment Rachel was born in May of 2006, I was aware of how important -how essential- community was and still is for our family. I remember a mom telling me that if I want support for the long journey ahead, I have to let go of some privacy and try to bring others into our life.
I don't write the blog to draw unnecessary attention to our family or seek to invoke pity. There is no hierarchy in sorrow, and however we choose to live with our joys and sorrows depends on multiple reasons. Originally, we started the blog to keep our family and friends updated on the medical issues surrounding Janneke.... and then the story kept going.
I guess that's ultimately what drives me: the hope and belief that our story keeps going. We are all a part of God's story, and trusting Him through the twists and turns isn't easy. At the heart of our stories (and in your comments and feedback) is the essence of belonging - to each other and to Him. And we need to know that we belong - even with our abnormalities and idiosyncrasies.
When we listen to each other, we make space for belonging.The Pots' church has been very supportive, which makes their journey as a family a bit easier. But someone had to ask, "How are you doing?" to learn how the church could help. Have you ever asked someone affected by disability to tell you their story, then really listened - the woman in the nursing home, the man with Down syndrome, the parents of the son who was paralyzed after his motorcyle accident, the young mother who was recently diagnosed with bi-polar disorder?