OUR JOURNEYS

2006 Conference Story

Jennifer Nelson

Convention report from the kids corner

I am a pediatric nurse at Vanderbilt University Medical Center in Nashville, Tennessee. My husband, Bill, is an automotive technician. Our journey with PH began in November of 2000 when our youngest child, Joey, age 2, suffered an out of hospital arrest, and was resuscitated with CPR. He was subsequently diagnosed with primary pulmonary hypertension, and we spent another two years as the parents of a very active and happy little boy on flolan, and later tracleer. Unfortunately, his PH was advanced at time of diagnosis and he died two years later of a pulmonary hemorrhage. During this time we were able to form some friendships with other parents through the PH parents online support group, and we have continued to be active with this group.

We have older children who have reached adulthood now, but no little ones on flolan. That has left a gap in our lives. We came to the conference to renew friendships with a great bunch of PH parents and befriend some of the younger crowd with PH. We volunteered to help out with the kids programs.

PHA has a great bunch of kids. I'm not the best at remembering names, but this is a diverse group with intelligence, wit, persistence, charm and creativity. In fact, they will challenge you to match their qualities. I am not sure I always came out on the winning end of that challenge.

Friday afternoon we arrived at the kids’ room in time to see some of the magic show presented by the amazing Hondo. There were several eager hands when he asked for volunteers to assist with the illusions. Our kids have amazing powers of observation. In fact, I noticed that most of the kids were better at figuring out how the tricks were performed than I was. After the show, one young man gave my husband a tutorial on how a certain card trick was performed.

Bill and I went to the fashion show next. This is a really fun part of the convention where PHer's of all ages have the opportunity to walk the runway and model clothing and give their fashion tips. There are a lot of ways to hide those remodulin and flolan pumps, and I am always impressed by the creativity we have in this organization. And our younger crowd has its share of stars. It was obvious the kids really enjoyed being on stage, and we saw a number of creative backpacks, purses, shawls, sashes and other methods of hiding those pumps.

Saturday morning we assembled in the lobby for a field trip to the St. Paul science museum. Each of us chaperones had three children we were assigned to keep track of. The kids were really excited, and I enjoyed riding on the bus with them and watching them form and renew friendships. The museum was a big hit with everyone. We watched a 3D movie about elephants and rhinos. You know, the kind of movie where you wear those funky three -D glasses and the picture seems to jump out at you. I actually saw some of the younger crowd reach out and try to touch the images they were seeing before their faces. Many of us had our pictures taken in a group with those funky three D glasses on.

After the movie, we had some free time to explore the museum. There was a table with museum employees who helped the youngsters with puzzles and demonstrations that helped illustrate various scientific principles. That table was a pretty popular feature, as were the hands on exhibits. There was also a dinosaur display, but the group of girls I supervised never seemed to care about the dinosaurs, preferring to remain in the part of the museum with the interactive displays.

The older kids wandered at will, but could usually be counted upon to get back together. But just as our young crowd has its share of stars, we also had a few planets among them. The ancients called the planets wanderers, because they just didn't seem to have predictable orbits. Keeping up with the planets became a group effort with the adult volunteers.

We were able to assemble the whole group for a demonstration on sound and vibration sponsored by the museum staff.

Our fearless leader, Laurie Jeter, made her move while the group was assembled and all were accounted for and led us all up to the lunchroom for box lunches. Afterwards, we went outdoors to participate walking through a maze composed of prairie grasses and wildflowers. I'm happy to say we didn't lose anyone in the maze and we all made it safely to the bus and back to the conference. Many of the children reunited with their parents after the field trip, but many stayed in the children's room for movies and crafts. It was during this time that my husband fashioned a visor to look like a gooney bird. There was a booth upstairs at the conference where you could have your picture taken with your friends. I had my picture taken with my beloved wearing a gooney bird chapeau.

While we were at a support group meeting for parents of children with PH, a crew from Home Depot had the kids hammering away, making bug collection boxes. I stopped by to see if they needed any adult assistance, but Laurie Jeter and crew seemed to have everything well in hand. The kids actually looked calmer swinging hammers than they had at the science museum. Perhaps it was just a wise idea to wait to bring the hammers out until later in the day, when everyone had had some exercise.

I have to admit, I am filled with admiration for Laurie Jeter. She seemed to do a great job of planning activities that appealed to a wide variety of ages. The fun of the conference for me was seeing the joy on the children's faces as they participated in the fun of just being kids, and watching the friendships that they formed and renewed among their peers. We have some budding artists, jewelry designers, craftsman, carpenters, magicians and researchers in PHA (I know we have some researchers, some of them ask a lot of questions).

If you are the kind of person who enjoys watching both the stars and the planets in their courses, talk to Laurie Jeter, our PHA parent co-coordinator. I am sure she can find a job for you. She is the organizer, and she did a fantastic job. I am just the foot soldier and the scribe, and it was a pleasure to help out and watch our young people grow.

Jennifer Nelson

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.