Our kids are special. We have three. When #1 son was diagnosed with cystic fibrosis, we were stunned. There was no family history on either side. We had no warning. We had no idea what CF was or how it would change our lives. Some of the early literature we read about it terrified us with the gloomy outlook and shortened life span predictions. As we became more informed, the fear subsided and our confidence grew along with our children.
One unexpected aspect of our lives surprised us. Having a child with special medical needs awakened us to those around us facing similar problems. Much like when you are shopping for a new car, you suddenly become aware of how many similar makes and models are on the road, our eyes opened to the people around us living their own quiet lives of desperation.
Deafness, autism, physical handicaps, emotional trauma, children of divorce, single-parent homes, absent fathers, were already surrounding us. We had never noticed. Once we joined the “imperfect family” club, the endless variety appeared as if out of nowhere. Like us, these families faced challenges understood only by others who went through them in a similar way.
We have learned through direct experience that many well-meaning people are simply clueless in how to relate to someone in pain. People try to say comforting things, but often miss the mark. For example:
“Your child has breathing problems caused by an incurable genetic disorder that creates thick, sticky mucus, clogs airways, and interferes with digestion as well? I knew a kid with a cold and a stomach ache. It passed after two days. I’m sure your child will be fine.”
We recognize these people are attempting to connect and offer support in their own way. We don’t fault them for it. We also realized how lame our own previous efforts had been when reaching out to others in what was now our situation. We decided to do better.
We started by listening more carefully. We took steps to seek understanding of their needs. We asked questions where we could in a non-threatening manner. Are there foods or activities that should be avoided? Are there preferred ones instead? What can we do to help?
We gave them their space. Once we made it past the initial discussions of the specific condition (deafness, autism, etc.) we stopped probing. If the family wanted to share more, we let them do so at their own choosing. We did not interrogate them.
I remember a time when our kids were young and we were at a buffet restaurant. Our two little CF kids ate much more than their peers at every age. We joked that they ate like teenagers when they were only six years old. That evening was “normal” for them. They had us take them to the serving line a few times each and cleared their plates of all food every time. Towards the end of our meal, an older couple approached us and struck up a conversation. It quickly became an one-sided question and answer session that allowed the older people to reach a conclusion and they shifted to offering advice on how to “fix” our kids through nutrition. The older couple meant well. They simply lacked understanding of all the facts and were also multilevel market salespeople for vitamins.
We decided early on to not be those people. Our purpose is not to try to fix all the broken people in the world. The job is too big and best left to God. Our role is to accept the people and be genuine friends to those in need. No judgement. No isolation. Simply love and care for them as best we can. It can make a world of difference.