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Aaron

Aaron Bissell

Historic Day

Friday June 26th was a historic day for the United States and for the Bissell family. Today the Supreme Court ruled in favor of marriage equality. An easy call for most, but fun to watch the Republican presidential nominees trying to figure out how to best respond to this ruling. It is not about equality, it’s about votes for them. Enough politics.

Today also marks the last official day of school for the Bissell boys. Because all 3 boys have special needs, in Massachusetts they receive their services and therapies through the public school system until their 22nd birthday. On their 22nd birthday, they move from the school system into adult services; a huge and emotional transition.

We’ve spent several months visiting and researching adult programs for people with developmental disabilities. All three boys have very different needs, so no single program will work for all. We’ve finally made the best decisions we can for all three boys. They will take the month of July off and start this new chapter of their lives on August 3rd.

The hardest part of this transition is saying goodbye to all of the wonderful people in the Grafton Public School system. Hard partly because there are way too many people to thank! The boys have been in the school system for 19 years! Anyone with a child with special needs knows how many people are involved in caring for their children while in school; everyone from the teachers, to the classroom aides, to the therapists. But this is only part of the picture. The over-used saying “it takes a village” is definitely true for special needs kids. It’s not just the direct care workers that are needed to help a child with special needs be successful at school, it’s also the administration from the superintendent to the school committee to the office staff, van drivers and school nurses, custodians and cafeteria workers and even the regular education students who make inclusion work. Multiply all of this by 3 and you begin to see why it would be impossible to thank each individual who made the boys’ school years successful.

The boys have also spent all of these years with many of the same students. The students as well as their parents have become a close-knit community and dear friends. These parents are also working through this difficult transition and trying to find the best placement for their adult children. Sadly most of the young adults will be scattered among the many adult programs around Central Massachusetts. We will miss that comradery, but hope to keep in touch with as many of these amazing parents and kids as possible.

Anyone who is reading this and had anything to do with Eric, Aaron or Anthony’s school years, THANK YOU!

Here are a few photos from the twins’ last day of school:

Bon Voyage party for the twins.
Bon Voyage party for the twins.
Aaron receiving his diploma
Aaron receiving his diploma from Special Education Administrator Mr. Lundwall
Eric receiving his certificate
Eric receiving his certificate from Special Education Administrator Mr. Lundwall
School to Work students and staff
School-to-Work program students and staff
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UMass Memorial Neonatal unit turns 40

Telegram & Gazette Sept 14, 2014

Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit's 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)
Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit’s 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)

By Michael Gelbwasser CORRESPONDENT

WORCESTER — Aaron Bissell spent his infancy fighting for survival in the UMass Memorial Neonatal Intensive Care Unit. Now, 21 years later, “I’m well. I’m doing a lot of writing. And I take singing lessons. I pretty much do a lot of creative stuff,” said Mr. Bissell, of Grafton.

The neonatal intensive care unit’s 40th birthday was celebrated Saturday at the UMass Memorial Medical Center — University Campus, 55 Lake Ave. North. Numerous former patients of all ages gathered for a group photo on the front lawn.

The festivities celebrated “all the families that were able to have their children come home with them,” to remember the children “that left this world, frankly, too soon,” and to thank the families for letting the doctors and nurses “care for their children,” said Dr. Alan Picarillo, the UMass Memorial Medical Center’s chief of neonatology.

“It was a total privilege of caring for these children,” he said. “These families would leave them with us for long periods of time.”

The unit has cared for more than 20,000 infants since opening in 1974 with six beds, hospital officials said. The program now has 49 beds. Aaron Bissell and his twin brother Eric, born at 26 weeks, were treated “at the old NICU, over at Memorial Hospital,” in 1993, according to their mother, Cynthia.

“I can tell you, the first couple of years, both of the boys were very medically fragile. It was totally scary,” she said. “I’m a nurse, so I knew the risks involved in twins being born 3 1/2 months too soon.”

“I really came here today to thank some of the doctors. I remember all of them,” Mrs. Bissell added.

Dr. Picarillo said “the caring of the front-line staff” has been the one constant during the unit’s 40-year history.

“The amount of time they spend with the families, comforting them, encouraging them, empowering them. That’s what hasn’t changed,” he said.

Dr. Picarillo noted that infants brought to the unit are living longer than ever.

“In 1974, typically under 28 weeks wouldn’t survive at all. Now, we routinely save babies with 23 weeks,” he said.

Triplets Jameson, Payton and Callie Kaska of Northbridge are now 3 years old, said their mother, Lindsay. Their earliest days were “an emotional roller-coaster ride, living day to day,” Mrs. Kaska said. Now, the kids “are amazing. They’re right on target. They’re healthy,” she said.

Many families and staff reconnected on Saturday. Nurse Christina Evans was especially proud of Edward Parker Gagne, 4, of Holden.

“This little guy was one of my first babies I cared for,” said Ms. Evans, who has worked in the unit for 14 years. “To see him where he is today brings tears to my eyes.”

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