Recently I was at an event to support families with children with special needs. This is a common outing for my wife and I, and we met some wonderful people that work not only to include their own children but all children. These people, be them people of faith or not, are in my eyes working to bring the all-inclusive culture of the Divine to Earth as it is in Heaven. They know the importance of the moment and also know full well “no one sinned,” as Jesus explains in the ninth chapter of John when asked about a disabled person.
That evening I met a woman and her husband who raised a child into adulthood, and who sadly passed away a few years ago. However, my initial reaction to hearing that their child passed away was, “Wow, they did it, they lived through their child’s whole life, they did it.” I caught myself having these thoughts, glad that I wear glasses as I believe it is less noticeable that my eyes began to glaze with tears with such thoughts. The rest of the conversation was about our respective work toward inclusion and acceptance of all.
So why was I so moved that they outlived their child? Because most nights I fall asleep with the prayer or thought, “do not let me die before my son says I love you” or more often “don’t let me die before my son.” And the horror of that desire is truly a sign our earthly world is lacking to say the least in the love and resources for our most vulnerable citizens.
Now this may be the place you are tempted to tell me, “Oh he will be fine,” or worse still a story of a kid you knew of that started talking at 10…..basically we know you are truly comforting yourself, and as a pastor I grin and take it, since I see a person before me needing comfort about their own fears, disabilities and fear of mortality. I know once I am in a safe space I may share how frustrating such platitudes are, but since we hear so many, do not worry; I doubt I would remember who said what. I too am hopeful my son will talk and perhaps even live alone eventually, but I can assure you he will need support for such things.
I have had this morbid thought or prayer come to light late many nights, but it was this guttural moment when I met this couple that outlived their grown child, and I actually realized how ingrained this desire of immortality has seized me. Knowing parents who have lost children, I can imagine these thoughts of these prayers of mine to be offensive, and so I agree. These parents even share some of the stupid things that are said to them as to console the one engaging them, and while I understand a piece of that frustration, I cannot imagine that pain, that Hell. Even when the child lives to adulthood, it is so hard, and yet my mind goes to it in prayer.
I certainly do not think I will outlive my son, but I feel I must, because every day I am struck by how he is treated as a mutant, though people use kinder words like “special” or “vulnerable.” There are many superheroes we have met, from teachers to the kind man who, when told my son has autism (because sometimes we feel it necessary to know his difference) responded not by saying “sorry” or “that’s OK,” but with “thank you for sharing, how best can I interact with him?” and sat with my wife and him in the back of the church they were visiting. You may be one of these supernatural people who desire the diversity of neurology and bodies, and I thank you. But you know as I do that we have a lot of work to do to include all in our culture, despite God’s action of sending rain and sunlight [Grace] on the righteous and unrighteous (Matthew 5). People seem to dole out grace imperfectly to those that are like themselves.
Knowing the way society treats my child and his similar friends (my friends), has made me desire an immortality I know I cannot obtain. Having been at many death beds, I can only hope when I am in such a bed, I know you are there to support my son and our friends, for no one should desire to die after their child.
Mary’s heart was “pierced with a sword” (Luke 2:35b) and I can never understand that pain, nor do I want to even desire it, but I have.
During the light of day with the promise not of immortality but of eternal life I pray a new prayer: that we will care for all our differently abled children of God, and their families, and provide the support and encouragement they need. May we see each other in the same light: all of us are temporarily abled bodied, all of us struggle with inclusion, and we all need one another, and that helps make the nights shorter (save if he does not awake at 3 a.m.).