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Starlight

Bissell Adventure

We got free dinner and ballet tickets from the Starlight Children’s Foundation. Unfortunately, Rich’s schedule changed and he had to work the weekend. So I decided to take the twins by myself. They both love the ballet. I left Anthony at home with my mom, because he is too loud at a ballet and can’t sit still that long (been there, done that). Eric, well you never know how he will do, sometimes he does great, sometimes not… I really didn’t feel like going, but hey, it was free, the boys wanted to go and Starlight was expecting us. So, in order to get the ballet tickets, you have to go to the dinner. We were to meet at the Hyatt Regency Hotel (nice!) between 4:45 and 5:00pm. I left my house at 3:15 to give us plenty of time.

Here’s what went wrong…

First, I took a wrong turn getting into Boston, even with my co-pilot Christine (Our GPS; Aaron named it after the movie “Christine”). Any of you who have driven in Boston know how bad it is to make a wrong turn. This city is not set up like a modern city. They made the roads from old cow paths from colonial days, so there are one way streets everywhere and nothing makes sense. Anyway, Christine “recalculates” and starts bringing us around and around in circles! I’ve discovered the hard way that the GPS stinks in the city with tightly packed streets and tall buildings.

After going around in circles for an hour or so, we finally stumble upon the hotel. We were told to park in the garage, but the garage is 6″6′ feet high and my van is like 8.5″! So, I drive around the hotel, no place to park and no valet. We drive around and around again. By this time, I’m ready to turn around and go home. The kids are hungry and the dinner has already started. But the kids were really looking forward to the ballet, especially Eric who love Cinderella. It would be very tough to explain to him why we were going home without seeing Cinderella, Ugggg.

I found a different parking garage that looked tall enough for the van, so I pulled in. I barely slipped under the 8″8′ sign, but once I got inside, the garage dipped to 6″8′! I said screw it and parked along the side, got the kids out and found an attendant who said it would be OK to leave the van there. Nice guy, I think he felt sorry for me. I was so frazzled after driving around Boston for an hour.

So, it is two blocks to the hotel and we get there and there are stairs! I had to go around to another door and the doorman had to go find a key for this little stair lift closet. I had to leave Eric in this closet, while the guy locked him in. Aaron and I went down stairs to meet him. Luckily, Eric was happy when he got off the lift. Like I said, you never know with him.

Now it’s 6pm and we are an hour late for the dinner. Aaron’s anxiety is kicking in, since he knows the letter said, you MUST arrive on time! At this point I didn’t really care since I knew the show was at 7pm and what were they going to do, send us home? It was embarrassing arriving so late. But they fed us anyway.

Now, the plan is to walk over to the Wang Theater, which is seven blocks away on Boston’s cobble stone sidewalks! Eric enjoyed the bumpy ride, but I was tired by the time we got to the theater. Now, my anxiety kicks in since Eric is not too sure he wants to be there with all these people. But, we managed to get through most of the show. Eric was a bit loud a couple of times, but not too bad. I sat in a seat behind him and Aaron found a good seat further forward, so Eric actually did a bit better without being able to see me.

The play went a bit too long, if you ask me, but Aaron was loving it. I could tell that Eric was getting tired, and also, he wasn’t happy that the music was not Rogers and Hammerstein’s Cinderella, or even Disney. He would have liked it much more if he knew the music. But other than pumpkins, it was really hard to tell we were watching Cinderella. Anyway, there were only a few minutes left when Eric decided he had had enough and started making a big scene. I unlocked his chair and started moving him out of the theater, when I realized my purse was somewhere on the floor in the dark. I reached down to find it and Eric’s chair started rolling away! I forgot that there was a ramp to get him to his seat and I couldn’t see it in the dark. OMGosh, he rolled all the way down the isle and into the sound booth. What a scene! I was so embarrassed. Luckily, Eric was fine. Not sure if there was any damage, I didn’t stop to find out. I got out of there as fast as I could!

Than I had to leave Eric in the lobby to go in and tell Aaron where I was (this time his wheels were locked)! Still, I didn’t want to leave him, even for a minute, but remember Aaron has an anxiety disorder.

Well, the show ended in just a few minutes, too bad Eric couldn’t have lasted a couple more minutes, oh well.

As I was waiting for Aaron to come out of the theater, some lady shows me a camera and said, “is this yours?” Yup, sure was! I have no idea where she found it or how she found it in the dark, but I was thankful. I think I’m losing my mind sometimes…

I couldn’t get out of there fast enough. As we were rushing back to the van, I hit one of the cobble stones the wrong way and the tire came off one of the front wheels of Eric’s chair, so I couldn’t push him without tilting the chair back, which wasn’t easy, since he has those “anti-tilt” thingies on the back of his chair. Luckily, we were almost to the garage when the tire came off.

Then, of course, someone parked next to me in the garage, so I couldn’t put the lift down. I had to move the van, just to get Eric in. Now a new problem. I can’t get out of the garage without going up to the lobby to pay for parking and get my ticket validated. I can’t push Eric, so I had to leave the boys in this underground garage at 11:00 at night in Chinatown! Aaron did fine though, he was very brave and locked himself and his brother in the van while I went to pay for parking (parking was supposed to be free from Starlight, but it cost me $20.00).

As we were leaving Boston, I noticed that I was almost out of gas, but I took a chance and got onto the MassPike.

OK, Now for what went right…

The dinner was excellent and Eric did very well in the restaurant, even though there were lots of kids there, which can set him off. He did great and he eat all of his dinner (that’s progress!).

Aaron loved the show and he got to see the whole thing. Eric liked most of it and did fairly well. It was just a bit too long for him. Plus, he had to poop… I think that’s why he acted up at the end. Fair enough.

We made it home without running out of gas, not sure if I’ll make it to a gas station though!

I was able to fix the wheel on the wheelchair when we got home.

I kept the boys home from school today and we all enjoyed sleeping in.

So, all things considered, just another fun Bissell adventure.

Below are a few photos, thanks for the nice lady who found my camera. Thanks also to Starlight!

Aaron at Dinner

Aaron in his element; he loves fancy restaurants and going to the ballet.

Cindy & Eric

Twins at the Wang
Twins at the Wang (see the devil in Eric’s eyes?)

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Wish come true makes big splash

Enjoying the hot tub are Aaron Bissell, at left, and his brother Eric, who is held by their father, Rich Bissell.  Behind them are Cindy Bissell and Anthony Bissell. Photo by Virginia Campbell

Enjoying the hot tub are Aaron Bissell, at left, and his brother Eric, who is held by their father, Rich Bissell. Behind them are Cindy Bissell and Anthony Bissell. Photo by Virginia Campbell
Enjoying the hot tub are Aaron Bissell, at left, and his brother Eric, who is held by their father, Rich Bissell. Behind them are Cindy Bissell and Anthony Bissell.  Photo by Virginia Campbell

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.

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