Monday, January 23, 2017

Week 179: Marching forward

Want to know what happened in our house this week that was CF-related and unexpected? Nothing. Yup. No news to report. We've been off Cayston a week, and so far, so good. Still very much in one-day-at-a-time mode, but we'll take it.

Lime had his 18 month check up (18 months?), and it seems that he has left his little teapot (short and stout) phase behind him. He is still short, but now he is skinny. Given how much he moves around, I can hardly say I'm surprised. The doctor recommended a high calorie diet and some extra iron. Luckily I have some previous experience with those things. In the mean time, and not as much in the background as it would seem from the blog, Lime has continued to blossom into a real little person. He has his various passions, including his dedicated efforts to befriend our cat. In the past 24 hours, he has offered her such treasures as an olive, a red Lego, a piece of a donut, and a green block, placing each offering at her feet when she declines to take it from his hands.

On Saturday, I did what I thought needed to be done and ran from our house over towards the state capitol to join our edition of the Women's March. I have never participated in a protest before, but I felt like this time I had to go. One of the top issues on my mind is (no surprise) access to healthcare. It's pretty simple--kids like mine would die without access to healthcare. And, from my very fortunate position with so many resources at my disposal, I feel like that access is under attack. If the threat feels real and immediate to me, I can only imagine how much more real and immediate it feels to those who have fewer resources. And, let's be clear--chronic disease is not a rare thing. About 1 in 2 adults has a chronic disease of some kind. Even rare diseases are not rare things--1 in 10 people in the US has a rare disease. In summary, this issue affects everybody. Every single person in the US either has one of these diseases, or has a first-degree relative who has one. We need to work as a country to figure out a way forward on this.

There has been a lot of talk on the various interwebs over the last couple of days about what the march was, what it meant, what it will mean going forward. I've done a lot of reading, and I don't have any general answers. What I can say for certain is that I have the phone numbers of my three representatives in Congress programmed into my phone, and they have heard from me in the past weeks and will continue to hear from me on a regular basis with regard to this issue. Obviously, there are so many other issues, but I am realistic--I have the bandwidth for approximately 0.8 issues, which I am rounding up to 1. I am hoping that some of the other 3 million or so of you will be out there making calls about the other ones.

A side bonus of attending the march was that I managed to connect in person with one of my best CF mama friends. It's ridiculously hard for us to get together, because we're busy people with young kids, and our kids can't be around each other lest they pass germs back and forth. So, I think I'm not exaggerating when I say that we last got together for lunch in June. And, we promised that we'd have coffee together sometime before the mid-term elections. So that's something.

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