Saturday, May 12, 2007

Today is a great day! I am here at work checking my email when I see a message from Northeastern, my alma mater for my Master of Science in Leadership with a concentration in Nonprofit Management, diploma to be mailed, as of May 5th. But this message contains a CONGRATUALTIONS header. That's right- I have been accepted into the "highly selective Law and Policy Doctoral Program" - woo hoo! It continues to say (from the program director), " I look forward to your participation in our unique scholarly knowledge creation and professional skill development adventure" OOOH a scholarly adventure, my favorite kind, as I have never been very outdoorsy.

I really fell like my work towards this degree will be life changing as I have selected to pursue a concentration in helath care policy, paying careful attention to issues related to organ donation, allocation, ethics, financing, etc. I feel that I will be the voice for both recipients and donor families. I can't wait to see the crop of colleagues I will be networking with, as the program is a cohort type.


A very special Mother's Day to all my friends with children or children in utero. Not to mention my own very special MOM and step MOM and second MOM's like Mrs. Rushforth and My Russian Mom and NANA. AND to all those specials MOM's that have passed on. May they all be remembered for their sacrifices: past, present and future!

I am,

Friday, May 04, 2007

I would have never believed it myself, but last night my mother and I attended my Sigma Epsilon Rho Honor Society initiation at Northeastern. I thought there would be more people from my program there, but there weren't. It's sort of like Omicron Delta Kappa, the undergraduate leadership honor society accept that this one is for high scholastic achievement, carrying out your work and lfie so that you can look in the mirror and tell yourself you've done well, and Research, a lifetime commitment to seeking and passing on the truth. It was great with a bar and yummy food, including chocloate covered strawberries which is always a sign of a classy function. My real graduation is Saturday, but I need a day off so I am going to see my friend Kelli C and her husband Jon. I have worked a lot to keep me busy, I mean a lot for a handicapped girl, and I could crawl under my desk and sleep anytime now. It's beautiful day and I am thinking of sitting outside. I am also trying to think of what is next to come. How do I occupy myself while I wait for this pancreas? Any suggestions besides shopping and reading?

Wednesday, May 02, 2007

A very happy month of May to you! I haven't been writing much because there isn't much that has changed over the past couple of months. I am trying to keep myself as busy as possible so I have picked up some extra hours at mini-storage, just trying to keep myself occupied and perhaps a bit more in the loop. Kevin has been very busy with work and I have been trying to get him jobs and connections, such as with my aunt Deb since she knows everyone in town. I got my meds refilled so the struggle to sleep is less on my mind than in previous posts. But for me, even working 30 hours a week burns little Jilly out.

I am graduating this weekend, and have been invited to join an honor society at Northeastern so initiation is on Thursday night.

So I just got an email from Jenn Cray, the nice volunteer coordinator at NEOB informing me/us of an essay contest about your transformation from transplantation. The winner gets a trip for 2 to Pasadena, CA to be on the Gift of Life float in the Rose Bowl Parade. Here is what I have written as a first draft. Pleasesend suggestions for editting. It is supposed to be 500 words and I am over slightly, but 5 days in Cali for New Years' would really hit the spot!!! It's only for kidney, liver and heart transplants so I am trying to work the multiple organ angle.

Dear Selection Committee,

Thank you for the opportunity to describe the “Ride of a Lifetime” I have experienced through the miracle of transplantation and all the associated research, technology and caregivers that have made my ride all that much more smoothly. Growing up with cystic fibrosis, the “T” word was always in the back of my mind, but when my doctor finally told me it was time to be evaluated for a transplant, it still came as quite a shock. You see, I had battled the disease, with some success, despite some bumps in the road, all my life and was no worse for the wear. Unfortunately, my disease outpaced the speed and application of technology. But by the time I was in college, I couldn’t walk to class without stopping for air, and was asked to leave class on occasion because my coughing was too disruptive. I agreed with my medical team that I did need more extreme intervention, but not until I graduated: a lifelong goal I refused to forsake. In 1998, I graduated with honors from the University of Central Florida and moved back to Boston to be “listed.” I waited nearly a year and was fading fast. No one thought I would make it to my next birthday, but in April 1999, something so miraculously occurred, my family was speechless. My great Uncle Bobby (my grandfather’s brother) had an aneurysm and died. My family carried out his final wishes, one of which was to have his lungs donated to me. His lungs were a perfect match to me in everyway. I joke that now my lungs are 75 years old and puffing along great!

Sometimes, however, challenges are put before us in pairs. In 2004, I discovered almost accidentally that my kidneys had failed. I was living in Florida at the time and had to stop working to start on 4 days a week of dialysis for four hours each. But I didn’t give up! I received my kidney transplant through a circle of faith and friends after a year. My donor was a young, healthy, loving husband and father who died tragically in an accident. I felt a difference the minute I got the kidney. I could feel the toxins filter out of my system. I saw my color come back. I had received my second, yes second, lease on life!

Some people search their entire lives for a sense of purpose. I feel blessed that mine was presented so clearly to me. Though my body may have been a little battered, my soul did not break. I have learned through the pain that patience will rein; I have learned that with hope almost anyone can cope; and I’ve learned that your legacy isn’t always in what you live but what you leave. Each day I wake up with the goal of spreading the word of organ donation education and awareness. I live the example for my donors, who are with me every step of the way. I have earned two Masters Degrees and volunteer weekly, speaking and serving the New England Organ Bank. When I am healthy enough to work, I plan on using my degrees to honor my donors and donors everywhere in a way that pays homage for their sacrifice. I am what remains for the families that they have left and the legacy by which I am graced.