Thursday, November 1, 2012

What you can't get out of, get into wholeheartedly

Every single night around 9:30 I swear that I am going to bed early. Then 10,000 little things come up and before I know it it's midnight. Tonight is no different. Tonight is Halloween, otherwise know as my birthday's eve. I took the kids trick-or-treating. I ate my weight in Milk Duds. I edited some pictures that I had taken last weekend. And now at 10:30, I sit at the computer answering emails that I had meant to respond to earlier or ordering a gift for someone I've been thinking about or jotting down some thoughts on this blog. 

Yesterday was a great day. I had the opportunity to speak at our Finest Young Professionals Kick Off event. In the past we have been a sponsor family, assigned to a few candidates to offer a personal connection to the diseased and support through their fundraising journey. Sometimes the candidates would come over to meet Drew and be in contact with questions or needing encouragement. Other candidates we would never even hear from or see one time. This year, in an attempt to up the ante if you will, they are having the candidates set up an initial meeting with a CF sponsor family so that they can hit the ground running. At the meeting yesterday, J.P. Clancy spoke about the clinical side of the disease with Gary McPhail (two of our docs here in Cincy). I shared what day to day life is like and took the candidates on a tour of the hospital and answered their questions about the disease. You can see in their faces and through their words that they had never been to a children's hospital before. Before Drew was born, I hadn't really either. It's almost second nature to me now, being at the hospital, with how much time I spend there, both out of necessity and out of desire. But it's hard to see sick kids. It is impactful when you are trying to drive home how important the fundraising that we are doing is. I think that they got it. I hope that they got it. 

After that, I had lunch with Dr.Clancy and another doctor who is spearheading the C3N project that I am working on bringing to the CF world. If you are new here and haven't heard about C3N, you can visit and under the Patient Intelligence hyperlink watch a brief video outlining what it is. Keep in mind that this network was created for the IBD community, but we are working to bring it to CF and other chronic diseases. It was a great meeting. We are working toward laying out the framework for CF community. I really enjoy being a part of this project and pretty much any project with Childrens hospital. It just seems so purposeful and like the right thing to be doing. I can't explain it great, but I do love it. My day at Children's wrapped up with my volunteer time in the NICU. There weren't a ton of parents there last night, but I spent a lot of time talking with the ones that were there. One family has been in there since June and though their attitudes are positive and their spirits high, you can see that it is just wearing on them. I hope that they will get to go home soon. Another family has a brand new baby and just started on their CF journey. I wanted so strongly to share the message of hope with them and I hope that they were able to get that from me. It's hard at the beginning, and there are still times when I get down about CF. But life for me got a whole lot better when I accepted it and decided to fight for it instead of against it. I saw a quote the other day that couldn't be more true for what I have done. It was this: "What you cant get out of, get into wholeheartedly." I'm on a mission baby and I like to get my way. 

I should take this opportunity to go to bed. It's late now. I got my thoughts out. Hoping that tomorrow is a good day.

- Posted using BlogPress from my iPad

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