Life is what happens to us while we are making other plans.

John Lennon

It was a sunny April day and the doctor was saying something that I could barely take in: “Your son has cerebral palsy. If he walks, he will never walk normally.” Thus began a challenge that was unimaginable five – one minute! – earlier. For months I felt there was something wrong, but never thought I would hear anything like what the doctor was telling us.

Being a parent is an emotional complex: joy, exhaustion, love, and worry. Add in a diagnosis—autism, cerebral palsy, schizophrenia—and a new dimension instantly emerges, a dimension that is laden with anxiety and fear. Nothing prepares us for this sheer overwhelming experience; our fundamental identity changes overnight and a lack of confidence and feelings of ignorance inundate us as we face this new realm. We move from thinking of ourselves primarily as individuals and as parents to being the parents of a child with special needs first and foremost. Unanswered questions loom. How will I cope? What does it mean? What can I do?

For many of us it is far from easy to discuss these challenges, but discuss and share we must. In meeting the situation, we grow. We expand and we triumph. One essential thing I learned is that asking for help is not a sign of weakness. If anything, it is a sign of strength. We often feel the pressure of being a perfect parent—pretending we are coping effectively—but we need to talk about our stresses and strain. It is okay not to find it easy. And I didn’t. Conversations are crucial for our mental health and must be a part of everyday family life. Talking about a problem with a trusted person is the beginning of being okay with the overwhelming responsibility of caring for our families and our child with special needs.

What I discovered – the support systems, professionals, and experiments – resulted in a young man who walks—albeit with some differences, but walks nonetheless; who studied abroad; who lives and loves in his individual way. While he grew into a contributing member of society, I grew too. Professionals provided me with tools and resources to establish my confidence and boosted my self-awareness making these possibilities a reality.

There is no rule book, no right or wrong. We just have to make it up and do the very best to care for our child and our family even while our moments of joy are clouded with a real sense of darkness and isolation.

That sunny April day when my journey began is now more than thirty years ago. I mapped my voyage by learning from others who went before me and being willing to grab hold of the lifesavers they offered. I adapted. My journey became a quest to find solutions and then share them with others.