Our six-year old granddaughter, Ella, fell off the dock into an oozy, stinky, gooey patch of muck at an inland lake last week. Remaining upright, but sinking in to her thighs, made for an easy retrieval. But her sandals didn’t come out with her. So, I laid on the dock, stuck my arms into that muck, and dug and dug. After ten minutes, the result was pulling out only one; the other was enveloped into parts unknown. Only one remains.
Somewhat like death. When a loved one dies, it is as if they pass away and try as one might, there is no way to pull them back to life. Yet something remains.
Our son Paul died suddenly on July 31. Paul was 40, had Down Syndrome, and lived with us all 40 years. He shaped us in ways so different from the ways our other children did. His passing was so quick and there was nothing we or the physicians could do. He was gone. Yet Paul remains with us.
That which remains is more than memories, although the cliché given in sympathy bears some truth. He shaped Barb and me, our marriage, our other children, our outlook on life, our decisions, and most of all, our faith.
Paul was the second child born to us, just 20 months or so after our first born, Katie. As we gathered as a family, Katie has spoken of being Paul’s protector – when other children made fun of him, when friends carried their fear and uncertainty about disability into our home, and in the chaos of family life.
What remains? The shaping influence Paul had on Katie’s life: caring, protecting, helping.
Two years after Paul was born, we were surprised to learn we were pregnant again, this time with Becca. With Paul’s developmental delays, they met developmental milestones at roughly the same times. Becca has said she felt like Paul was her twin. Ask any twin how the other is part of them, in their thoughts, actions, and attitudes.
What remains? Becca has talked about Paul being so close to her that she felt his death ripped out a piece of her, but she remains with Paul always a part of her.
As life continued, our family grew by the birth of Jessica and three more adopted siblings from Ethiopia: Yaineabeba, Getenet, and Fekadu.
Jessica noted how Paul both centered our family, and yet his influence went well beyond. “Paul wasn’t just my only biological brother with Down’s Syndrome, he was the crowning jewel and beating heart of my family. Anyone that met him became a better person for it—Paul was talented like that.”
What remains? A bunch of folks including more than 400 Facebook users who commented, with so many describing the ways Paul shaped them.
Our adopted kids were a bit older when they joined our family, so they had experienced Ethiopian culture where the birth of a disabled child resulted in shame, questions about who had sinned, and life hidden at home with no opportunities. Getenet asked more than once whether it was true that Paul had Down Syndrome, because his working, writing, reading, fully engaged brother was unlike any other disabled person he had ever met. In response, Getenet founded a Christian special education school in Addis Ababa.
What remains? A school that now is leading government schools in opening their doors to special education students and most recently reaching 500 kilometers to the south where eight sets of parents of a local Christian school have asked us to lead the inclusion of their special needs children in the school there.
Death only completes this earthly life. The image of God that forms and shapes each one of us is God’s indelible mark on our lives. It is never erased. And when our memories will inevitably grow dim, we need to look only to what has remained. . . in our case, the ways in which Paul shaped us and so many others. The light he brought to the world has not been extinguished.
