A little boy died on Monday. His name was Francis, and he had Down syndrome. When he died he was wearing a blue onesie that once belonged to William.
Last week I spent some time going through Penny’s old clothes to see what would fit Marilee. I found myself in tears as each item provoked a memory—she wore these little green overalls when she was learning to stand up… she wore this white dress at Easter… she wore this hot pink bathing suit the first time her dad took her swimming… They brought back memories, but my tears came from more than memories. Holding those clothes brought back the wonder of a little girl growing up, the joy of all the firsts, the surprise of loving her as much as we do. And they stood as a bittersweet reminder that she has indeed grown up, that she’s riding bikes and talking in paragraphs and going to school all by herself now.
Francis lived in Zambia. He was almost 18 months old when he died. He weighed 11 pounds. His family didn’t have much by way of food or clothes. Eleven people live under one roof with one person to provide food. After his mother stopped breastfeeding him Francis didn’t really eat anymore. He went from a plump and happy 9-month old to a starving child. There were options—the local hospital offers free food for malnourished children and the facility that offered him physical therapy was well-supplied with Plumpynut, an ultranutrition packet developed by Oxfam. Francis could have survived and even thrived. And yet he was left to die.
Our friends Eric and Holly Nelson founded a ministry called the Special Hope Network. Eric and Holly have three adopted children with Down syndrome, Maggie, Mollie, and Sam. A little less than a year ago, the Nelson family headed to Zambia to offer hope to children with intellectual disabilities. Although they’ve met roadblocks along the way, much of the past year has contained stories of progress—finding mothers desperate for information about how to care for their children; securing stable chairs for children with cerebral palsy; taking kids to clinics to receive braces or glasses or therapy; teaching therapists and parents how to stimulate their children; and dreaming about the future, with plans for teaching hundreds of therapists how to educate and help children with disabilities. (See Perfectly Human posts about other kids within the Special Hope Network: Gabriel and Brighton and read their blog for more stories.)
They visited Francis and his family every few months. A week ago they found him close to death. The family granted the Nelson’s permission to try to save Francis’ life. They took him home and began feeding him in small doses every hour. They dressed him in William’s old baby clothes. But their efforts came too late. Francis died two days later.
Eric Nelson wrote this in response to Francis’ death:
Years ago we at Special Hope Network had discussed that due to lack of care for most children with intellectual disabilities, the overwhelming poverty, and the lack of consistent medical and social supports that a significant part of the work and ministry we’d be called to would be simply to love children until they died. And in so doing, we open our mouths for them, and declare to all who would hear, but most importantly, to the children themselves, that they are fearfully and wonderfully made, and we are thankful for the hours or the days that we were privileged to love them.
We were privileged to participate in a very small way by offering old toys and clothes to Eric and Holly when they moved to Zambia. I am grateful that Francis had their loving and comforting presence as he died. And I am hopeful that through the efforts of people who care about those with disabilities, the Francises of the world will one day outgrow those clothes.