When I first started this blog I had the usual things parent-bloggers have: delusions of talent, some cute, quirky kids and the privilege to have the time and resources to take a step back and get a perspective from which to document our lives. But then something happened.

One kid became ill.

Not the kind of illness that can kill a child, thank goodness. But also not the kind of illness that can be cured with antibiotics or an outpatient procedure. This is the kind of illness that changes how the child perceives the world, perceives family and even the child’s own self. It is an illness that makes the child lose a sense of self-worth, and creates doubt in the child’s ability to interact with others.

And it is an illness that drives parents to search out different doctors and more doctors and treatments and books and camps and everything possible that might create some positive effect for the child, but it is all groping in darkness.

As time passes the parents realize that the needs of the ill child and their other children are getting further and further apart, and the parents get confused and exhausted and stressed by the desire to give all their kids the childhood they deserve, and find that it is impossible to provide for one of the kids, and may be improbable for the others.

The illness leaves no part of family life unaffected. It dominates the parents’ thoughts and a lot of their time. But it is hard to share the details with friends, to gain support and understanding. The ill child wants to conceal the illness, as if that were possible, from all, and the parents respect that desire, to a point. Distance builds between some friends and family, as they wonder what is going on with the family. Some folks don’t want to interact with the family of the ill child, some want to provide well meaning but unhelpful cures or treatments, and a few are able to just be with the family. Cherished are the friends, who, during a dinner where an episode occurs that involves children screaming at each other, doors slamming and things smashing against a bedroom wall, smile understandingly and refill the wine glasses.

And of course, the parents occasionally indulge in self-pity. Why us? Why our child? Why is the life we planned for and worked for not going according to the plan? Self-pity can turn to self-hatred and despair as the parents realize that no good outcomes were ever promised. Their kids, even the ill one, are alive and with a home to live in and food to eat; so much more than some kids in the world have. How can the parents possibly feel sorry for themselves when there is so much bad in the world and they are enjoying so much good? But their child is ill.

And years pass.