Professing Christians always tremble a little at Christ’s commission, that we take up our cross daily in order to follow him. Yes, we want to do so – but to accept the suffering this will entail is, humanly speaking, hard; indeed, without grace it is impossible.
My thoughts are occasioned by reading Defying Gravity: How Choosing Joy Lifted my Family from Death to Life by Joe Sikorra (Ignatius Press). The author and his wife, Lori, an American couple originally from Florida, learned in 1998 that their much-loved older son, John, then aged 7, had juvenile Batten’s disease, a progressive and fatal illness. Six months after this traumatic diagnosis they discovered that their younger son, Ben, aged four, also had the same disease.
Sikorra writes of John that “In an instant I was deprived on the dreams a father has for his son. If I were to find a path ahead for us, I would have to look for it in a place I had never looked before.” Inevitably there was much agonised soul-searching. Having dreamed in his youth of being an actor he chose to join the police in order to ensure a stable income for his family. “What if I was being asked not to act a part but to live one? What if the story God wanted to tell with my life, with my family, would contain all the best elements of any great story – sacrifice, death and redemption?”
Told with candour and honesty about his and Lori’s struggles to accept their changed life with their two sons, Sikorra’s account is shot through with his own zany, sometimes black humour. Underpinning the story is the growth of his faith and trust in God. As he reflects, “We are not to compare ourselves or our children with others, but we are to be grateful for whatever God in His wisdom gives to us and to use it as well as we can to serve Him.”
Despite the boys’ progressive disease, which included blindness and immobility, the Sikorras’ book is filled with fun, celebrations, their trips to new places, the unwavering support of family and friends and the spiritual help of various priests. On August 18 2012 the family celebrated John’s 21st birthday. That John was still alive [he died not long afterwards], knew he was loved and could still enjoy life “proved to me that our family had indeed, defied gravity, at least for a time.”
Of the challenges in their marriage and his wife’s devotion to their sons, Sikorra tells the reader, “We were not supposed to have endured the strain of two special-needs children. We had broken all the records.” What comes across for the reader willing to enter into this story is the miracle of small things: John’s own love for his family and his acceptance of his increasing limitations, alongside Ben’s determination to experience as much as he could, despite his handicaps.
The author’s concluding thoughts speak to all Christians who have learnt to practise detachment from the world: “We are all just passing through. There’s no reason to get too comfortable here. If we did, we would never be willing to let go. A glorious existence awaits us…”
The book reminds us that ordinary people can still be spiritual giants: it is bracing Lenten reading.
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