Friday, July 14, 2017

Easing The Burden

Meagan, Katherine, and I worked at the Vacation Bible School last week. The girls were both “crew leaders” of groups of about a half dozen elementary school children, and it was fun to see them having a good time and growing into leaders.

My job was to help put the snacks together, but due to some illnesses on the second day, I was asked to work at the Bible Discovery station.  The lesson ended by asking the campers what they have had to struggle with. One little girl raiser her hand and said that her struggle is that she has had Cystic Fibrosis, and has had to take enzymes before meals her whole life.

“Oh, no!” I thought. Because of the risk of infection, CF patients are not supposed to have any contact with each other. I quickly scanned through the week to think about how much contact this girl and Meagan would have had so far and would have the rest of the week. I informed the leaders of the camp that Meagan and this girl had to be kept as far away as possible, and shuffled their seating so they would be on opposite sides of the room during group activities. I talked to Meagan about who she was and how she had to stay apart from her. At the end of the camp day, I waited for her parents to come by so I could tell them Meagan was a CF patient, so they could decide for themselves whether this was an acceptable risk.

And still I wondered if this was enough. Should I have immediately pulled Meagan out of the camp? Should I have ensured beforehand that there were no other CF patients before we committed to volunteering? Should I make Meagan wear a mask? How do we balance between letting giving Meagan opportunities to do things she enjoys and not exposing her (and others) to unnecessary risk?

These are the questions families of children with diseases like Cystic Fibrosis deal with every day.  It is part of our lives. Even something as simple as volunteering at Vacation Bible Camp is complicated.

I mention this for two particular reasons.

One is that we are considering changes to health care policy that will make life more difficult for families dealing with major diseases. Our particular family would likely be insulated from most of the changes (since I am privileged that my particular skills happen to be well-valued in the marketplace, not any great responsibility on our part), but many other families would not, and would see their already heavy burdens worsened.

I understand that people have different opinions on what the federal government should do, and I tend to resist linking those to morality. Still, I would like to live in a country where we do what we can to ease the burdens of those whose are carrying an extra load, and for these families, having secure access to health care, and not having to worry that it will be capped, or will be unavailable with a change of jobs, or will be inaccessible due to pre-existing condition clauses. So, I ask you to use what influence you have to ensure that is who we are.

Second, I am once again doing the Cycle For Life in Woodinville, to help raise money for a cure for Cystic Fibrosis, which we are coming closer to, so that Meagan, the little girl in VBC (and her little sister, as I came to find out), and thousands of others and their families can live lives free of these burdens, doubts and questions. I invite you to join me or support me financially.

If your don’t feel you are positioned or called to do either of the above, I hope you will consider  what you can do to support the families in your lives who are dealing with diseases and illnesses.


John McGuinness

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