Last month I had the opportunity to eat lunch with two men from Malawi. I liked them, a lot. Lunch turned into dinner, and over dessert I committed to running a fundraiser for them. They met in college, and discovered they both shared a concern for the many children in their country who had been orphaned by AIDS. They began an orphanage, and as this single building grew steadily into a village, they encountered children even more overlooked than orphans, children with disabilities.
They began a program where children with special needs could receive nutritional meals, education, and occupational and physical therapy. The 25 spaces available filled rapidly. Some of the children were able to transition into the national education program with their peers. Families began traveling from greater and greater distances to access the program. Readers of this blog who have a child with a disability know how difficult transportation can be. Imagine that challenge in an economy run on the backs of bicycles and motorcycles. Rather than waiting to expand physical space, my Malawian friends began a mobile therapy program, somewhat reminiscent of Early Intervention services available to young children here in the US.
As we shared our meals at a popular local restaurant, they shared stories of what they’d experienced out in the villages: children who had never been outside, whose neighbors didn’t even know they existed, because their parents were too ashamed, embarrassed, or overwhelmed to offer anything more; battles with village chiefs and government officials who weren’t interested in offering help, but would contribute a roadblock or two.
These stories rang true to me. I didn’t have what many would call a “typical” childhood. I spent a portion of my youth as a missionary kid in Nigeria. I went to a boarding school, living the college life as a ten year-old. Summers and holidays were spent with my parents in the rural village they called home. I didn’t have much direct contact with persons with disabilities in those years, which is interesting, because statistically they were there. Mostly, I saw them near the marketplaces in cities and towns. Those who from leprosy, biology, or accident were missing limbs; those who had never gained the ability to walk; the blind, the lame, laying and scooting around on mats, makeshift sandals on their hands and stumps, begging for whatever kindness fell from the hands of passers-by.
The stories rang true because I have a son with a disability. Our journey with Isaac has been difficult. Every day we are faced with the choice of carrying a 45-five pound child up the stairs, or gently, patiently, cajoling, supporting, and coaching him as he does it himself; and he is faced with the choice of forcing his weak, rigid, legs to hoist his 45-pound body up the stairs, or gently, patiently, cajoling, supporting and coaching his parents until they carry him.
Our journey with Isaac has been difficult, but it has also been overwhelmingly positive. I wouldn’t give it back, not for all the gold in the world. I wouldn’t rob my family of the honor. I wouldn’t deprive Isaac’s three brothers of the privilege of living with him. I say this to every parent of a child with a special need: there are those about who say this life happens randomly. It does not. Somewhere deep in the depths of the place where meaning grows, down at the bottom of the right-side up, you were chosen for this challenge, because you are worthy of it.
There has never been a service or treatment Isaac has needed that he has not received. Sometimes we’ve had to argue, sometimes we’ve had to be patient, but in the end it always came. There has been difficulty, but seldom disappointment; frustration, but rarely despair.
I think of what, but for longitude and latitude, could have been a very different life for my son, and I cannot help but approach our Thanksgiving holiday with a heart full of gratitude. But gratitude, it seems to me, is more than a feeling. Gratitude is also an expression, an action. As I sat and listened to what these men were doing for those with disabilities in their home country, acknowledging that I’d seen that problem with my own eyes, and frightfully realizing that it could be my own beloved Isaac in that situation, I realized that my gratitude was meaningless if only expressed with my mouth. So, I offered my help.
I am not asking you, dear reader, to get involved with the plight of disabled children in Africa. That seems to be a cause uniquely suited to my life. I am asking that your Thanksgiving might begin with statements around the dinner table, but end in actions that change the lives of those around you.
Nathan Hackman is a stay-at-home dad to four boys, one with cerebral palsy. He writes about the amazing adventure of parenting with a few extra challenges. In his free time he . . . doesn’t have free time.