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Thoughts from a First-Time Conference-Goer
Packing up for four days in Florida is no easy feat with a parenteral nutrition–dependent child. The only consolation was that we were heading to the Oley conference and, if we forgot essential medical supplies, someone else was bound to have what we needed.
From New Zealand to Florida
Matisse had been born with chronic idiopathic intestinal pseudo obstruction and her only chance of survival was to be put on 24/7 parenteral nutrition (PN). We lived in New Zealand, a country of just four million people and very few on home PN, and were very isolated. I, of course, found Oley on the Web. I was envious of those who could meet to discuss and share experiences in person! It was a dream of mine to attend an Oley conference.
About four years ago my husband and I made the difficult decision to come to the United States so Matisse could be put on a waiting list for a small bowel transplant. So here we were in Pittsburgh, waiting for organs and just a short flight from Florida, the location of the 2009 Oley Consumer/Clinician Conference.
Not sure that I was really willing to make the trip on my own with my chronically ill child, I applied to Oley for a first-time conference-goer travel scholarship. I didn’t really expect to win. A few weeks later I received a phone call from Cathy Harrington in the Oley offices, telling me that we had won a scholarship—wow! No more excuses!
When Lesley, a Florida native and regular Oley conference-goer, heard that we would be attending the conference, she offered to collect Matisse and me from the airport. This was wonderful. I did not have to worry about trying to lug PN, supplies, and luggage into a taxi—plus Lesley has a daughter a little older than Matisse and they immediately became great friends. This is what the conference is about.
Matisse was so excited that she would finally meet others like her, she could hardly contain herself. Being a child on PN is very isolating, and she is now at an age where she realizes she is a little different.
PN Down Under
On arrival we checked into the Trade Winds Island Resort in St. Petersburg, dumped our bags, put the PN and medication in the fridge, and headed to our first meeting. It was for Oley Ambassadors. I attended on behalf of Brenda Dunn and Parenteral Nutrition Down Under (PNDU), representing New Zealand and Australia.
Matisse and I were a little late and quietly entered the room, trying to remain anonymous; after all, I was not entirely sure we belonged here as New Zealand and Australia were unofficial territories for me. I whispered to Joan Bishop, Oley Foundation Executive Director, that I was Jodee from New Zealand. Joan loudly announced, “And this is who I was telling you about!” Everyone in the group turned and welcomed Matisse and me. It turned out that Joan had just been telling the attendees about a small group down under (PNDU) who wanted to join Oley as an international alliance. We were warmly welcomed, and from that moment on I realized we were among friends.
Minority Are Majority
Those of us without tubes, lines, and bags were the minority at the conference, and this was great for Matisse. For me the friendships formed with other parents and the information shared by adult PNers was priceless.
I cannot believe I had debated with myself about attending the conference. I am a seasoned HPN mom now, with nine years under my belt; I am pretty confident with all things IV and was not sure there would be much at the conference that would interest me. Boy was I wrong! Although we don’t often feel it, the world of parenteral and enteral nutrition is changing; new information is regularly coming to light and the Oley Foundation keeps up with these changes. The conference offers great speakers and round table events to address current issues and practices.
Matisse spent much of each day having a blast in childcare provided by Oley volunteers, which allowed me to attend these speaking events. At night we partied, with the silent auction being a highlight, as well as the Beach Party. There was never a dull moment. We came home exhausted, but totally fulfilled with knowledge and friendship.
Ready to Go Again
I realize that for many, attending an Oley Conference is out of the question. However, if you are putting it off because you think it is just too hard, think again. I have already booked for this year. Matisse has been looking forward to the conference since she arrived home last year. We cannot wait!
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