SOFT Stories – Growing Up in SOFT

Growing Up in SOFT

By Patrick Healey, 2010

There are certain places that provide special advantages while growing up. Growing up by the ocean with beaches, fishing and boating is a great place to grow up. Growing up in the mountains with hiking and skiing is a great place to grow up. Growing up in a place with pond ice and rinks is a great place to grow up. More than geographic advantage, there are special circumstances that ironically make life better for kids. Growing up in SOFT is a great place to grow up!

I first went to a SOFT gathering for New England families when I was three. I helped with a G-tube feeding.  Reportedly, I was fascinated. A year later my family went to the Baltimore conference, where I first met people I would spend many more summers with. Yes, many of us have grown up in SOFT, attending the conference every summer or most summers. We came as toddlers, too young to go on the kids’ outing, later went on fun day trips and the family night out, years later helped chaperone younger kids and now look for other activities in the area. We enjoyed the hotels, food and scheduled and unscheduled adventures and a few misadventures. We often met with other families before or after the conference to go to a zoo, theme park or other nearby attraction. I went to Busch Gardens and three years later, the Toronto Zoo with Lauren, explored Mystic Seaport (educational) and Las Vegas (much better) with Scott and Ellie. In Corpus Christie we met up with the Utah group. I went to Pike’s Peak with Andy, as well as later visiting him on the way back to school and saw a tractor pull and a Toby Keith concert.

We SOFT sibs grew up increasingly comfortable with room keycards, elevators and hotel restaurants. We aged out of the daycare room and had fun in the hotel. We swam in many pools, indoor, outdoor and in Pittsburgh one that was both. It was a milestone when Andy came to get me early one morning for a swim without parents. I think I was ten. As we got older, we met in the lobbies until late at night, talking and laughing. We bid at auctions with a number of heated battles. I have a shelf of sports memorabilia, and I suspect Derek does too. Do we include Steve here as one of the kids? Behind the scene we filled conference notebooks and bags, trucked equipment to the picnic site, helped transport kids to clinics. We walked kids in wheelchairs and played with younger sibs. We became friends with the young parents who joined SOFT and loved their children. We helped them because we had been involved for so long. We grew up being given responsibility and working together.

What was fun and allowed changed as we grew up, but what stayed the same is that we were together and enjoyed each other. We rode on swings and a golf cart in Baltimore and were entertained by clowns and a magician. We swam, ice skated and played in a video arcade in North Carolina, then divided into groups and worked with Hospice counselors. Grieving sibs made tags that proved too heavy for the balloons—otherwise, a good idea. Those with surviving brothers and sisters wrote feelings to be put in a box. Most of the time we are one group with divisions only by age. We made teddy bears, one for us, one for a sick child in Boston. We signed a song with Kris in Utah in 1997. We explored caves in Utah, and went to zoos in Utah and Chicago. In an obstacle race, we got wrapped in toilet paper on a Pittsburgh field, rode carnival rides in Rochester, rode Space Mountain at Disney World, and did white water rafting in Colorado. We swam, played basketball and rode horses at the picnics. We drove together to malls in Rochester, walked to malls in Salt Lake City and crossed the street to the mall in San Antonio and Chicago. Some, including Cornelia from Sweden and Ellie from the UK, danced in the Olympic fountains in Salt Lake. We watched fireworks in Baltimore, and Salt Lake as a group and some watched fireworks in Boston the day before the conference. We cheered the Red Sox, Rockies, Pirates, Cubs, White Sox, Rhinos and Salem Red Sox. We went to many more science museums than we liked, too few theme parks, but it was parents who planned the kids’ day out. We played hide and seek in the hotel when we were young, played Monopoly in the lobby in San Antonio, played pool in Roanoke. We eventually created our own kids’ trips: looking for go karts, playing golf, going to Dick’s, driving to Park City.

We come from many states and several countries. We wear shirts of different sports team and have our own Red Sox-Yankees rivalry. We also proudly wear our SOFT Sibs shirts that for little kids helped chaperones keep track, but marked us as a group and united us. Last year at the Salem Red Sox game, we looked down at the kids running the bases after the game and saw the SOFT sibs in their bright green shirts heading for home plate.

Some kids come to every conference, like Andy or Lauren have a choice. They were there at the first conference with the Holladays, Showalters, Bona-Cohens with older sibs, the younger ones born later. In North Carolina it was the Donahues, who came as toddlers without Mary, then came with her, with Tommy and Shannon added years later, and Josh came with Rachel, Abbie coming later. As the years went on, other new siblings joined the group, as their families became SOFT members after the birth of a child with trisomy. Kelsey and Derek came and brought Kammie with them every year. Ellie came to Florida in 2000 with Saskia and Scott also joining us a few years. Chrissie brought her big brothers. The Dyes came in 2003, remembering Morganne, and every year after and Kimber and Chelsea’s husbands have joined the group. Ashlyn comes remembering Erin, and she is part of a next generation of teens at the conference. The Knobels come to Utah conferences and some others. Sumer comes with Gabby and later Justin and Nicholas, and Ashleigh comes with Taylor. Connie first came to Chicago in 2002 with Tucker, later came with Joey. Mariah and Olivia come with Zion; Drew and Jordan come with Lindsay and have joined the sibling panel. Some siblings were born or adopted after a surviving child with trisomy: Aaron brought Hannah; Rachel brought David and James; David brought Meghan; Mark brought Rachael, Matthew and Tabitha; Randi Jo brought Leah; Jonathan brought Evan, Jacob and Nathan, who attended the first conference since Jonathan’s passing had a great time making new friends and doing fun activities. Farren and Ashton each brought younger sibs then stayed away with their growing family, but came back. We look forward to seeing again sibs who attend when the conference is in their part of the country. A wave of younger sibs growing up in SOFT are making their journey, attending all or many conferences: the Papillions, Lints, Winslows, Cooks, Marohns and Rickers, and in the last few years there have been new families whose young children easily joined the sibling club. New friendships are forming, new group activities being enjoyed, new mischief being made, and new advantages being bestowed on a new generation of SOFT sibs.

Those of us without our brother or sister with trisomy were able to share time with the surviving brothers and sisters of our friends. We became comfortable with the necessary routines related to trisomy, learned to easily identify different syndromes and mourned the passing of children we loved. Friends, we stand side-by-side each summer, remembering, releasing balloons and sharing our grief. We laugh a lot together, but we also cry.

Time has passed. The toddlers of those first conferences are now adults. We are not kids anymore. Three of the Holladays are married and Tricia who was old enough to sign songs at he conference before I was born has three children. Tracie Patch brought two children to the picnic in Roanoke. Both Dyes are married. Connie is now married, has a daughter, Audrey, born New Year’s Day of the new decade. Many of the SOFT sibs will start their own families in this new decade.

At the opening reception we went from sitting under our parents’ watchful eyes, to the nearby kids’ table, to the far away teenagers’ table, to sitting with young families with children with trisomy. We dance at the party and enjoy being together. We play with the young siblings who are beginning the journey we have been on for many years. Through the years there have been changing liaisons and some drama but we remain a group. We keep in touch by Facebook and cellphones. We are a long distance family that has a yearly reunion, and we pick up where we left off. We all have friends from the neighborhood, school, church and camp, as well as cousins and teammates, but our SOFT friends are a bonus.

Patrick Healey  2010