Parenting for $10, Alex

This morning I sat on a panel with another parent describing what it is like to care for our children with “chronic life threatening conditions.”

I know. You are sorry you missed it.

The parent panel was the first installment of a long day of classes/seminars/whatever for the health care professionals enrolled in the continuing education program. I have done this many many times in the past and greatly appreciate the interest that the nurses, doctors, respiratory therapists and other professionals have in Maggie’s story, and in the story of other families . It never ceases to surprise me that during the course of the panel discussion, something or another will make me emotional.

People inevitably ask questions about how the news of Maggie’s medical problems and other issues were communicated to us. They want to know because that is one of the most difficult parts of their job and they want to know what goes right and what goes wrong for families. I appreciate that very much, but as soon as I start talking about it I am right back in the room when I first learned of (some of) Maggie’s problems, and the anguish we felt. I can feel tears welling up in the back of my eyes.

It happens every time and it surprises me every time.

My response to this concern about communicating – there is simply no good way to give someone bad news. There are a hundred bad ways, but I cannot think of a good way. I was appreciative at the time that the doctors came in with information and some idea of what was wrong so I could focus on that; but it was still not a positive thing for me. It would have been a lot more negative if they were cavalier or flip about things, but no one was.

We were asked to recount a time when communication with and between medical providers really worked in a positive way. Even though I had days to prepare this, I could not come up with an example. I told them honestly, 95% of the time the communication works fine, partly because I don’t let up until I get answers. For purposes of remembering, however, only the other 5%, the bad ones, come to mind. You remember and recount the bad ones, not the good ones. We take the good ones from granted. I hope they realize that 95% is still an A.

It is good for me to do these panels, even though they can be emotional. I can focus on how far we have come, the things we have learned and the person Maggie is. Sometimes all of that is lost in the day-to-day care and management of all of this.

Caring for a child with chronic life threatening conditions is a ton of work, physically and emotionally. However, being Maggie’s mom is fun. Participating in these panels allows me to transform her from the medical definition of her status to the person she is. She's a lot more intersting as a kid outisde of her numerous diagnoses and issues.