Tuesday, November 27, 2012

When I grow up

I have been so out of time for the blog lately, and I hate that because I love sharing whats going on with us. Admittedly, my lack of time is self imposed as I sign up to help out or attend everything that is offered to me.

We had a really nice Thanksgiving last week. Some of Martin's family was able to join us for dinner on Thanksgiving and hang around for a few days, allowing me plenty of time for my Black Friday shopping and several photo sessions that I had scheduled. The photo biz has really picked up recently. I am on the fence if I want it to really turn into anything more than a [really] small business that I can occasionally make a buck from. I have been thinking a lot lately about what I want to do with my life after the kids are all in school. I have gotten so involved at CCHMC with CF and some other parent opportunities that have come down the pike. I really, really love being there and spending time with the people that work there and learning about all that they do and have planned to do to improve. I remember when I was first invited to participate in the ParentTOUCH program and the director of family services (I believe) came in to talk to us about the program. He said that their mission was to eliminate dissatisfaction. I was immediately humbled by this. Working at Children's is so much more than just a job or a paycheck for the people who work there. They are such special people who are truly making a difference in the lives of so many people whose paths they cross every day, and I started thinking about how I wanted to be a part of that.

As working began within the PIQI group, I got the chance to speak with several members of the CF team and other groups within the hospital and learn what they do and how I can help them. I became involved with the C3N project and now I am a part of a team that is working to bring this to the CF community. As a branch off of that, I've had the opportunity to learn about an amazing company called Ginger.io, that turns personal behavioral data into insights about your health and provides the opportunity for earlier interventions. (check out their website for the scoop on how that all actually happens).

I had a meeting yesterday with the Cystic Fibrosis Foundation about all that they have going on right now and what capacity I have to help them. We talked for almost 2 hours about what events I like and what I don't so much and how I can help them. They want to make sure that they're not burning me out with their requests for help. I already do their advocacy work, pretty much alone since I can't seem to get another darn person on my side. I love to help them out with whatever I can because ultimately (and admittedly somewhat selfishly) its helping us out in the long run. So I told them what I love and what I don't love so much and we talked about how they can use me for the upcoming year. One of the big things was bridging the gap between the foundation and the clinic, something I need to talk with the folks at the clinic a little bit more about next time I'm in.

In all of this stuff that I've been working on, I have been able to take a step back and see an underlying theme - the need for and importance of collaboration. Collaboration between patients and parents and physicians and researchers and data scientists produces that shared goal of improving outcomes for our kids. I want to be a part of this. This is what I want to do.

So the other day, I was doing Drew's breathing treatments, flipping through my Twitter account, and came across a job listing for Ginger.io. Here's what it said:
Are you happiest at the heart of a group? Do you get energy from interacting with people? Do you enjoy being the “voice” of an organization? If so, then you might be a great fit for Ginger.io. We are currently looking for a full time Patient Experience Manager to help us interact with and support our patient users. We want someone who is outgoing, empathetic, and able to easily connect with people. A passion for detail and organization is key, as you’ll be managing many different relationships across our community. And as the “face” of Ginger.io with our patients, you’ll be an essential voice inside our company as well, helping us think through how to best meet their needs.

Um, HELLO!! If I could have written down on paper what I want to do with my life based on the things I've been working lately, no better words could have been chosen than the ones written here. This is my job!! I want to do this!! But wait. I still want my family to be #1. ARGH!! This is why I thought that perhaps the photography gig would be a good choice for me - make my own schedule, work when I want to, control my own income. But I would have to grow my business if I wanted to really make money doing it. And frankly, I'm pretty happy with it the size that it is because it is both easy to manage on my own and allows me the flexibility that I'm looking for in raising my family.

I decided that I couldn't let this opportunity pass, so I emailed Ginger.io telling them all about myself. I have business experience (pretty decent business experience I might add). I have healthcare experience. I have built relationships with important people to promote my cause. I am a voice within the CF community (a pretty loud voice, some might say), and if we want to work to bring the C3N and Ginger.io to CF, I need to be a part of this. I know that the time that I am willing to put into this isn't exactly what was listed out in the job description, but the time that I can put into it if they are willing to be flexible and creative in my job description, will be productive. If I haven't already scared them off with my strongly verbalized desire to be a part of their team, hopefully I'll be hearing from them soon on how we can make something work.

So there you go. I have made the decision that I want the work that I'm doing to be more than just me offering an idea or suggestion at a meeting I can weasel my way into. I want my voice to be heard and my vote to count. I want to be a part of the decision making and help to improve the outcomes for kids like Drew. Not full time just yet. Jake isn't even 1 yet and I want to take him to story time and music class just like I did with Ella and the twins. But he's going to grow up and I'm going to need to be a financial contributor to this family [especially if we're sending this village to Catholic school]. I really liked the job that I had before I decided to stay home and raise our family. But the purpose that my dealings with Children's has given me has completely changed the way I look at the world. I have a lot to give and I want it to be purposeful.

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