You’ve learned to treat these reactions with indifference. You’ve learned to smile in every situation, and at the point of conflict, to use the stronger ammunition of words. People who have known you and your child for years don’t know how you cope. With the awareness of the child’s illness, with the difficulties of daily life, with the drudgery of housework, with doctor visits, the constant lack of time for yourself… not to mention finances. They don’t know how to ask – they’re afraid to ask – and when they get the simplest answer, they shake their heads in disbelief, saying: “I don’t know how you do it, I could never manage, I think I’d die.” These are the replies of women, because the men usually just freeze in fear and don’t say anything. Generally, they don’t even ask questions; that exceeds their abilities. Here ends the strength of the so-called stronger sex. And onward you push the stone of the everyday, like Sisyphus on that huge mountain – you, a woman, the mother of a child who will never be independent.
Mother of a child who will never be independent, you are more of a mother than others are. Not because you want to be; you just don’t have a choice. Where do you get the strength? Do you belong to the select few, to those who can bear more than others? People rise to the challenges life throws at them, or so a certain wise saying goes. Another voice, in turn, says we know ourselves to the degree to which we are tested.
And you’re tested every minute of the day and night, you, mother of a child who will never be independent. Testing is a service in the name of love. The idea that love is a path strewn with roses is the invention of maudlin playwrights. You know that love, which is fulfilled on the path of service, can have a bitter taste. But what helps is awareness of the fact – generally passed over in silence – of the strength and courage of your child. Because whoever lives in a body that is crippled and at first glance weak, has great strength and courage. So your power, mother of a handicapped child, grows slowly, along with the dedication and love that help you fulfil the mission of your extraordinary life. I know this well, because I am you. I’m the mother of Jan.
Jan, my son, suffers from an untreatable metabolic defect; the lack of certain enzymes turned a healthy boy into an invalid. In fact, I’m writing a book about it, because the lessons I’ve learned from him can’t possibly be contained in a few sentences. He’s been my greatest challenge and teacher. He still is. Our common fate has led me through valleys, and over mountains of fear and courage. I’ll tell you about a short stretch of this road.
Immediately after Jan was born, I stumbled and fell onto an office chair, with my newborn in my arms. I broke my tailbone. Wanting to keep my child safe, I couldn’t keep my balance. Since then, 25 years have passed. Recently I was home alone with Jan for a long time. I was very fearful that he’d fall, knowing that I couldn’t lift him myself. Note that this is also the great fear of people who care for the elderly. One morning Jan stumbled in the bathroom, and clutched at my right shoulder. To keep him from falling, I lifted him up – he was hanging from my arm. At that moment, I didn’t feel anything other than great strength. Jan stood on his feet, and I loosened his fingers from my arm. The power I felt at that moment can’t be compared to anything I’ve felt before. It was a combination of spiritual might with exceptional bodily strength. I held 60 kilograms on my arm as if it were a half-full shopping bag. I was certain that bruises would appear on my arm the next day; nothing of the sort occurred.
Comparing my fall in the days after Jan’s birth with the strength I have now, I can’t cease to marvel. I’m thankful for this lesson, though at the same time I don’t wish it on anyone. And I really wish that once in a while somebody would hold me up too, if I happen to be falling. Yes, I have great strength, as do you, mother of a child who will never be independent. But even we need somebody who will be with us when we lose our balance. Both you and I know well that everyone has hidden resources of the same strength that helped me that day to keep Jan from falling.
Translated by Nathaniel Espino