Aaron appeared in a commercial for the Einstein Exhibit at Boston’s Museum of Science, March 2004.
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The Spirit of Giving
As many of you might remember, ThermoSpas recently donated a hot tub to the Starlight Children’s Foundation of New England for a young boy suffering from cerebral palsy. This small act of good will made all of us here at ThermoSpas feel wonderful. Then we started to ask ourselves, why can’t we make more wishes come true?
So in the spirit of the season, ThermoSpas is prepared to donate a limited number of hot tubs to those who need them most. And who knows best? Our customers. If you know of anyone who might benefit from a hot tub of their own, and cannot acquire one, let us know. Send us their name, address, and phone number, and a short explanation of why you feel they deserve a ThermoSpas. Then throughout the year, ThermoSpas will read through all of the nominations and determine the select number who are most deserving of a hot tub.
Send in your nominations to:
ThermoSpas
155 East Street
Wallingford, CT 06492
Family Focus On…
Medical Technology
Change and Perspective
by Cynthia Bissell, R.N.
Seventeen weeks into my pregnancy, an ultrasound revealed that our first “child” would be twins! Our excitement and anticipation were short-lived, however. Eric and Aaron were born at 26 weeks gestation-three and a half months too soon.
Our lives as parents certainly got off to a rough start, as did the lives of our boys, who were immediately whisked off to the neonatal intensive care unit (NICU). When we finally got to visit them, it was difficult to see our babies among all the tubes and wires. They looked like tiny albino monkeys, covered with fine blond hair.
A roller coaster ride
The boys spent the next three months in the NICU, a stressful roller coaster ride that can be truly understood only by other parents of “preemies.” Both boys had many of the problems common to prematurity, including hypotension (abnormally low blood pressure), respiratory distress syndrome, intracranial hemorrhages (bleeding in or around the brain), retinopathy of prematurity (an eye disorder), patent ductus arteriosus (a condition in which oxygenated blood flows back into the lungs rather than circulating to the rest of the body), hyperbilirubinemia (jaundice), and anemia.
Eric’s most serious problem was bilateral periventricular leukomalasia (PVL), a brain injury in which tissue around the ventricles (chambers in which cerebrospinal fluid is made and circulated) is damaged due to insufficient blood flow or lack of oxygen. Eric has spastic quadriplegic cerebral palsy as a result of his PVL. Aaron needed a tracheostomy because of acquired subglottic stenosis (a narrowing of the area beneath the vocal cords and the opening between them), an unfortunate complication of his earlier need for a breathing tube. Because of damage to his lungs and airways, he also had bronchopulmonary dysplasia, a chronic condition that would always affect his breathing. Aaron has more recently been diagnosed with asthma, attention deficit hyperactivity disorder (ADHD), and learning disabilities.
An amazing journey
The twins are now 9 years old and the trauma of the NICU has gradually faded. We are amazed at where the twins have taken our family over the past nine years. When the boys first came home from the hospital, I was often housebound caring for two sick, fragile infants. I turned to the Internet for information and support. My computer became my link to the outside world. I began building web pages as a way to network with other families and share our experiences. Since my husband Richard and I are both RNs, we had a bit of an advantage caring for sick babies. One of my web pages, Aaron’s Tracheostomy Page (www.tracheostomy.com) has become the leading tracheostomy resource on the Internet. I have also published a Pediatric Tracheostomy Home Care Guide, which is currently in its second edition. Networking with other parents around the world who are dealing with similar issues as our family was extremely therapeutic, and it not only helped us to work through our past experiences, it also is helping us face the many challenges ahead.
The twins hectic schedules of therapies, doctors’ appointments, and surgeries made it difficult to work a regular job. I have gradually moved away from nursing and now build Internet resources. This enables me to work at home with a more flexible schedule.
Benefits of networking
Once the boys’ health began to stabilize, Richard and I were able to begin networking in our own community. We attended our first Family Leadership Series in 1997. The Leadership Series is sponsored by Families Organizing for Change (FOC). FOC is a statewide, grassroots coalition of families with children and adults who have disabilities or chronic illness. The Leadership Series is a six-day series, which teaches families about leadership and advocacy. Richard served as FOC Regional Coordinator for two years and is now an employee of the State of Massachusetts, working with individuals who have developmental disabilities.
Through networking with other families, we found our third son, 9-year-old Anthony. Anthony has severe cerebral palsy and was at risk of institutionalization. We were so happy to be able to adopt him and avoid that outcome.
A matter of perspective
Richard and I are often asked how we manage, having three children with special needs. Well, we have learned that “problems” are all a matter of perspective. We discovered this back in the NICU when we were told that Eric had PVL and Aaron would need a tracheostomy. We were paralyzed with worry and fear, but gained some insight on our own situation by observing two other mothers. One woman was upset because one of her twins was temporarily under an oxygen hood; the other was despondent because one of her twins had died. All of us were grieving from different perspectives. We realized that although things could be better, they could also be much worse.
In less than a decade, our children have completely changed our lives. We have changed careers, met new friends, and become advocates for people with disabilities. We have also developed different philosophies and new perspectives. The boys have taught us about strength, endurance, patience, and what is truly important in life.
Copyright © 2002, Cynthia Bissell. Used with permission. To learn more about the Bissells, visit their web site at www.bissells.com.
Wish come true makes big splash
By Donna Daley
Telegram & Gazette Staff
GRAFTON– From the moment he enters the water, Eric Bissell sings. There’s his rendition of “The Wheels on the Bus,” but mostly he sings Walt Disney classics.
Eric is a veritable jukebox of animated tunes and his favorite is a Jiminy Cricket ditty, “When You Wish Upon a Star.”
Eight-year-old Eric, who has cerebral palsy, made his wish four years ago, whether or not upon a star is uncertain, but it came true nonetheless.
A month ago, Eric received a hot tub, courtesy of Starlight Children’s Foundation of New England. ThermoSpas donated the tub and Priority Electric provided the connection.
Starlight Children’s Foundation is an international nonprofit organization with the mission to improve the quality of life for seriously ill children and their families. Among other activities, it grants the wishes of children between the ages of 4 and 18 who have chronic, serious or life-threatening illnesses.
The New England chapter has granted 600 wishes to date.
At least once a day, Eric splashes around his “Cinderella Pool,” named for his favorite Disney character. The hot tub was chosen from a wish list of Eric’s favorite things that included an all-day elevator ride and a day spent at a Disney Store watching Disney features on the store’s big screen television.
This hot tub is something Eric has hoped for since his fourth birthday, when he and his identical twin brother, Aaron, and his parents, Richard and Cindy Bissell visited Storyland in New Hampshire.
It was their first time away from home, in a hotel, which caused Eric some anxiety. To calm his fears, his parents told him he was staying in Cinderella’s house.
That night, he discovered the hot tub. He had seen and used regular swimming pools, but never a hot tub.
The hot tub is as therapeutic for Eric as it is refreshing. In the pool, Eric, who uses a wheelchair, is weightless and able to move freely. Eric’s physician said the benefits of hydrotherapy also include increased breath control, improved balance and coordination, increased mobility and range of motion, and increased strength and endurance.
Eric has been dubbed by his family as the “King of the Hot Tub.”
The pool also has helped relax Eric’s muscles, which sometimes go into spasms. Before settling in for the night, Eric usually needs to take a muscle relaxant. But on the nights that he spends in the pool he falls asleep within minutes, without medication.
“He just wades in the water and it relaxes his muscles,” Cindy Bissell said.
“This is a wish that is going to keep on giving for years and years,” she added.
Eric and Aaron were born 3.5 months premature with severe disabilities — Eric with cerebral palsy, and Aaron with damage to his trachea and windpipe from a breathing tube he needed as an infant. Because scar tissue blocked his airway, Aaron needed a tracheostomy, for the first four years of his life, which allowed him to breathe through an opening in his throat.
In May, the Bissell family grew by one more. On May 1, Mr. and Mrs. Bissell adopted Anthony, a 9-year-old boy with cerebral palsy from New York City who had been in their care as a foster child since last year.
Mr. and Mrs. Bissell have become resources for parents of children with similar disabilities. In 1996, they created a Web site (tracheostomy.com) dedicated to Aaron, to provide information about tracheostomies, and it has becoming a leading Web site on that topic.
They also have developed a Web site for a local disability resource group, www.communitygateway.org.
Information on the Starlight Children’s Foundation can be found at https://www.starlight.org.