A few months into our life with a child with Down syndrome, I realized that we live in exactly the right place at exactly the right time with exactly the right resources. We are within an hour of the best children's hospital in the nation, a hospital that has a satellite office 15 minutes away. People move to our state because of the quality of services and education for kids with special needs. We live, literally, one mile from the state headquarters for the Special Olympics. Although it never crossed our mind that we would be seeking out therapists, educators, and doctors who cared for kids with special needs, we found ourselves in the perfect place.
There are any number of explanations for why Penny is living as full a life as she is: She's got a warm and stable home environment. Her grandmother, a preschool teacher, spends time with her every week. She doesn't have many health issues. She lives in a "language rich" environment. She goes to a music class once a week. God is looking out for her. I believe that all those things are true. I also believe that the dozens–yes, dozens–of professionals who have worked with her and with us throughout the short course of her life have contributed an incredible amount to her well-being. There's Miss Sharon, who puts a star on her back (for some reason Penny prefers them on her back) every week, leading her to tell me: "I did awesome jumping!" Or I think back to Miss Nicki, who insisted that Penny's language abilities were ahead of her mouth's ability to produce sound, Miss Nicki, who insisted that we never underestimate our child's abilities. Or the PT at CHOP who recommended her high chair, which provides such great structural support that she was quickly able to eat with a spoon and fork. Or the OT who showed us how to make drawing straight lines into a game. Or her ear doctor, who carried Penny in her arms instead of wheeling her away on a stretcher to her first surgery for tubes.
I could go on and on.
And much as writing this list only increases my gratitude, it also only increases my sadness when I think of all the kids with special needs who don't have access to any of these resources. No books. No toys. No trained therapists and special chairs. Some of them have everything else–the loving family, the desire for them to grow, the care of a loving God–and yet without the health and educational and therapeutic interventions, their lives are cut short and their ability to flourish diminished.
A few months ago, I was introduced to a family who is helping to bridge the gap. I'm hoping to use this space consistently to promote their ministry, the Special Hope Network. Let me tell you a little bit about them (it's their photo at the top of this post). Eric and Holly Nelson have three children, Mollie, Maggie, and Sam. Mollie, Maggie, and Sam all have Down syndrome. Eric and Holly adopted them from Brazil over a decade ago. They had been orphaned, and had little chance at life without significant medical attention. They are now teenagers. Eric and Holly's experience with their own children led them to want to give more resources to orphans with special needs, and particularly orphans with intellectual disabilities, throughout the developing world. To that end, they have begun the Special Hope Network.
Just a few weeks ago, they flew to Zambia as a family. They have moved, permanently, in order to offer resources and support for staff at orphanages throughout sub-Saharan Africa. The costs are minimal because they aren't building hospitals or orphanages or schools. They are seeking to equip the people already in place–caregivers in orphanages, parents with children at home, teachers, doctors–to care for the most needy children in their midst.
Holly and Eric are Christians, and their love for God fuels their work. Their kids love God too, and it is a powerful experience to hear Sam quote Proverbs 31:8-9: "Open your mouth... for those who cannot speak, for the rights of all the unfortunate. Open your mouth! Judge righteously, and defend the rights of the afflicted and the needy."
I'm going to write more about the Nelsons soon, and I hope that the community of people who read this blog might participate in a new project to help bring books to the children they are meeting. More details to come...
For now, I will conclude by saying that I don't understand our good fortune. I know that we have done nothing to deserve the richness of the place where we live, just as the mothers in Zambia who cannot provide food or clothing for their children have done nothing to deserve their poverty. I will never be able to figure out the disparity. But I am grateful to know that we have something in common–a love for our children, a desire for the best for them. And I am grateful that I can participate, even in a small way, in giving these mothers, these families, these orphans, a taste of the goodness that we have received.