Thursday, September 29, 2011

Lovely day for a blog post

I really love the volunteer work that I do at Children's. It has nothing to do with Cystic Fibrosis, so its a welcome break from something that's a part of our lives day in and day out. I love meeting other families and letting them know that I care about them, that I've sat in the chair they're in and paced the hallways they're walking up and down. I've worried and wondered and cried and prayed just like they are for their sick little babies. I've been in their shoes. And when they smile at me and thank me for stopping by to talk to them even just for a few minutes it makes it all worth my while.

I met a family last night who recently received a CF diagnosis. Its not very common, as CF isn't very common, but I was able to say to them, "I've been there" and mean it in the truest sense. They asked a couple of questions, but, like us, you're kind of at a loss at the beginning, not knowing what to ask or expect or tell people or anything. You really just don't know what you don't know. I shared my email address and this blog and I hope that the family will feel comfortable reaching out to me if they need support.

Last night I watched School House Rocks - I'm Just A Bill so that I could understand a little better how Congress works. I really am not very government literate. I feel like the things I know, I know very well, but outside of that I must turn to my trusty husband who can always break it down for me. It was an intimidating part of taking on the role of State Advocacy Chair. I knew that there would be communications with political figures, and I didn't want to seem like an idiot when I was talking to them. I like to think of myself as reasonably well educated and fairly well spoken, but government and politics aren't my specialty. As long as someone can help to explain it to me and I can take the time to learn and understand myself, I'm comfortable presenting it, and I feel like that has taken me pretty far in the Make Every Breath Count Campaign.

In March, there is an event called March on The Hill where the CF Community joins together in DC to tell our story (at least that's my understanding). Unfortunately this year we won't be able to go with Quatro due to make his/her appearance around March 21, but I'll jump on any other opportunity that I have to go and speak my piece to the people making the decisions that will influence Drew's life.

Speaking of Drew, we are about a week in on our Tobi and Cipro antibiotics and all is going well. As has been the case in the past, the inhaled Tobi seems to irritate his airways a little bit more than they're already irritated which means more coughing and more Atrovent treatments to keep him open. On top of all of that, I think the girls finally passed along their colds to him so we've got a noisy breathing, coughing, snotty little machine on our hands. I've braced myself for another long winter but I'm hoping this year isn't as bad as last year was!

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