Sunday, December 20, 2009

Op-ed on

Sen. Sheldon Whitehouse and Elizabeth Edwards have co-authored an op-ed that has been posted on regarding bankruptcy reform.

Monday, December 14, 2009

Finn's presence

I've never been a "believer"--no church for me, thanks--but have always had a sense of "something" bigger than me. Since Finn's death, I haven't know what to believe, and certainly take no solace or comfort from whatever "god" other people believe in, because what Finn suffered through should not have been allowed to happen if there were such a being. Regardless, I have had a sense at times of Finn's presence, in particular one time last week.

We got a magazine at the house. Patrick was flipping through it, and saw a cool art project. There was a picture of the artist and his son, whose name was...Finn. Patrick goes through a few more pages, and comes across an article about places to see in New Olreans. We are spending our first Christmas (though not celebrating the holiday itself at all) with Finn in...New Orleans. I then go through the magazine, and find a picture of three butterflies together. Butterflies are hugely symbolic in loss/transformation in general, and specifically with Finn. After I saw the butterflies, I couldn't help but cry.

The cynical bitter person inside me knows that this could all be explained away as coincidence. But the mom inside me knows that it can't be dismissed so easily.

Thursday, November 5, 2009


I testified before the Senate judiciary subcommittee on 10/20, along side Elizabeth Edwards. Al Franken was there, which was cool--he made some funny faces during the hearing and then nailed a conservative policy wonk with his questions. It was a whirlwind trip to DC--less than 24 hours, lots of nerves, then the "high" after my testimony was done.

A link to the full hearing (I testify first)--

The story was quickly picked up and covered on CNN, then the bill and our story were covered on Countdown with Keith Olbermann on MSNBC. Hearing Keith say my name was pretty awesome--have had a crush on him since his days at ESPN!!!

Link to Countdown Video--

I got to do a live interview on MSNBC at the local NBC affiliate the day after the testimony (will try to upload soon) and then did an interview for an NPR show called "The Takeaway", which is out of NY--

There was an AP story with a picture of me and Elizabeth Edwards that got picked up by many newspapers--including the Providence Journal, Boston Globe, Guardian (UK!) and the NY Times. I am in the newspaper of record!!!!!

It's been quite a trip over the past few weeks. It feels good to be able to do SOMETHING that might help others in our situation in the future. But talking about Finn and what we went through, as composed as I have looked on TV, has been very trying at times. I miss him every moment of every day.
Many thanks to those who have watched and responded to my appearances! Your support means alot!

Wednesday, October 7, 2009

Helping with the issue of medical bankruptcy

I was invited to meet with Sen. Sheldon Whitehouse on 9/28. The Senator was holding a healthcare roundtable focused on the issue of medical bankruptcy--he is proposing legislation that would help make the bankruptcy process for families (due to medical crises) easier and less expensive, including a provision to help protect such families from losing their homes. It was a great experience, and I even got some press coverage!

Article Link:

TV Interview Links:

I received a call from the Senator's DC office today, inviting me to come to share my story/testify before the Judiciary Sub-Comittee. I was v. worried that because I started a new job on Monday I might not be able to go. But, I am pleased to say that my director is awesomely understanding about this opportunity, and I will be testifying on 10/20!!!!!!!!!!!!! There will be 5 experts testifying, and then little old me. I was asked by the Senator's staff person if I was ok talking with the media (YES!) because there will likely be lots of press coverage and I may have a chance for my story to be covered in the national press! Wow!

Look out CSPAN, here I come!

Thursday, September 10, 2009


As many people who will find their way to this blog know, we are planning to set up a foundation in Finnegan's name in order to help other families dealing with CF and long term (more than one month) hospital stays. We were very lucky to have the support of friends, family, foundations and even strangers during our 13 (!) month intensive care stay with Finn. We have already raised over $1000 thanks to generous donations--including our "Fin for Finn" $5 fundraising drive in honor of what would have been Finn's 5th brithday.

We hope to be able to obtain our non-profit tax id soon, or at least officially start the process. We have to clear some things up financially on our end first, as we don't want anything affecting the funds we have raised.

Once the tax ID is in place, we will start contacting large businesses (think CVS, Target, etc...) for in-kind donations of gift cards, that we can then distribute to families. We will also start planning some big events/fundraisers.

Thanks to all who have supported this endeavor thus far--it is greatly appreciated and all funds raised will be going directly to families. Any operational costs will be taken care of by us.