“All I want is for the baby to be healthy!”

I hear this over and over and over again. It’s tied in closely with my other career, sexuality education. People find out someone is pregnant and their first question is, “Are you having a girl or boy?” or “Do you hope it’s a girl or a boy?” And the (progressive?) answer that so many parents-to-be give is, “As long as they’re healthy, I don’t care if they’re a boy or a girl!” and “All I can ask for is a healthy baby!”

But what are the implications for those of us with a baby or a child who isn’t healthy? Have we failed? Do we have the least desirable of all possible babies?

How can we, as parents of our sick or disabled children, navigate a world where health is necessary, the most important element of being human, the apparent baseline upon which joy and success is built? What does it mean when our children have not met the baseline?

The first, and most obvious, issue here is that all people are not “healthy” at some point in their lives. Most people will experience illness and disability in themselves or those immediately closest to them. To denigrate anything other than peak physical health as below the baseline associated with joy is immediately a problem everyone will have to grapple with.

But also, joy and laughter and liveliness and growth and so many other things can happen alongside illness and disability. Real life is made up of these moments – moments full of pain and joy and laughter and medical interventions all mixed up together. Acknowledging these moments as true and real as moments filled with other mixtures of other life experiences is necessary.

Our sick and disabled children are valid sources of joy and recipients of our love. Our families are not lesser because of the ways that our children’s bodies work or don’t work. We can wish and value and enjoy love and connection and other elements of the good life over and instead of physical health.

We can be whole in our children’s illnesses and disabilities.

And we can either ignore the people who prize health over all else or we can confront them within their ignorance. Probably we will all do both, at different times and with different people, based on how many spoons we have day. And that’s okay.

About Karen Rayne

Dr. Karen Rayne has been supporting parents and families since 2007 when she received her PhD in Educational Psychology. A specialist in child wellbeing, Dr. Rayne has spent much of her career supporting parents, teachers, and other adults who care for children and teenagers.