Being the Beloved:
stories of ongoing transformation in daily life
By Ellen Lo Hoffman, Spiritual Director and Founder of Soul Reparations
Our teenage son is diagnosed with Down Syndrome, autism, and speech apraxia. In his eighteen years of life we have only ever heard him utter one or two words that we could understand. We did years of speech therapy, he learned sign language, and he has a communication device. Yet nothing has given our son the ability to express himself beyond wanting a Coke or a milkshake.
We have prayed his whole life that he would be able to speak–to tell us where he hurts, let us know how he’s feeling, or what he would like to do for his birthday. We would have dreams in which he spoke in full sentences only to wake up and find it wasn’t real. We told ourselves, “This is as good as it’s going to get but it's ok, we love him no matter what.”
I stopped giving myself permission to hope. I had to temper it. I had to accept things the way they were.
Walking alongside someone with disabilities means moving at their pace. And sometimes it feels like you are not moving at all. It was safer to let hope go. Be content.
Everything changed two months ago.
We learned of a method of communication (Spelling to Communicate) that has enabled thousands of non-speaking people with disabilities just like our son, to fully communicate. These beautiful humans, whom society has believed to be severely cognitively delayed, are not only communicating daily needs, they are having conversations with their families for the first time. They are sharing their hopes, creating poetry, advocating for other non-speakers and attending college. Fully in there and highly intelligent. How did we miss this about a whole people group? How did we miss this for our son?
It is the miracle that we had stopped looking for.
My reality has been completely shattered in the best way possible. As I try to put the pieces of myself back together, I am realizing that for the first time since my son was born: I feel HOPE. And it's unlike any hope I've ever felt before. Fully unleashed.
To feel this much hope has left me gasping for breath. And weeping. So much weeping. I am going to get to know my son! This will change the trajectory of his life forever. But now I wait to see this hope fulfilled. I have to hold it.
I did not expect that all of this hope would also unleash grief. Something I have also tempered because it felt like such a betrayal of love for my son to grieve. But to hear the truth about him through these other non-speakers, is to realize how trapped he has been in the silence. He has not been blissfully unaware of his circumstances, which is what I would have liked to continue believing. I have felt grief so deep for his loneliness and silent suffering. I must hold this too.
Hope and grief feel like a tsunami trying to burst from my chest.
My question for God has been: “How can I hold so much grief and hope at once? Surely I am going to implode.”
God’s simple response to me: “I am holding YOU.”
I am free to flail about in this sea of new emotions. I don’t have to manage them, control them, or temper them. This is what it means to be fully human and fully alive. I will not drown. I am safe. God is holding me.
What are you holding?
How might the Spirit be inviting you to be fully human and trust that God is strong enough to hold the tsunami in you?
Ellen Lo Hoffman (she/her) is a Chinese American Spiritual director in the Seattle area who is passionate about the intersection of spiritual formation, race and justice. She primarily works with Black, Indigenous, Women of Color, and is the founder and director of Soul Reparations, a non-profit that provides BIWOC with free spiritual direction as a form of reparations. She lives with her partner Phil and three children and loves sci-fi and good dumplings!
Photo by Todd Turner on Unsplash
What books, media, activities are nurturing your heart, soul, mind, strength in this season as we are loving God and our neighbor as ourselves? Post in the comments below or hop on over to our Facebook page and share with one another.