Friday, October 31, 2014
Tuesday, October 28, 2014
Sunday, October 26, 2014
Thursday, October 23, 2014
Sunday, October 19, 2014
Thursday, October 9, 2014
Monday, October 6, 2014
It's Raining Pillows
I must say, stress is absolutely ridiculously a drag. But I am facing a week for my family... 3 dentist appointments, 1 ortho appointment, 1 physiatry appointment, jazz band, marching band, dog training, and yadda yadda yadda... OH also, spinal exrays and check up at Yale on Thursday for Daniel too. Sheesh. And I am supposed to...work??? It's a life that continually pushes you to the brink. I just really need a hug, and a break. God has given us this beautiful Fall. I'm grateful for those little miracles I see everywhere. Please come over to you tube and subscribe to our channel....we are really trying to grow. Much love and peace.
Sunday, October 5, 2014
Marching Bands and Unfriendly Golf carts
As life for everyone else moves along, so too does life for Daniel. Thomas is now happily acclimated to his position in the Newtown High School Marching Band. John and I have been enjoying our time together with Daniel, as we venture out to see the band and guard perform. Through rain and power outages, so far, we have remained dedicated parents!! Of course, technically our son is not even in high school, he is still an 8th grader, but he sure doesn't seem like a typical 8th grader. 
The diversion of the music, and Daniel's total wonder and amusement of the people, lights, music, whatever... makes it fun. There was once a day that I played in my high school marching band. I played the flute and piccolo and music was the only place that I could go to escape stress and build my self esteem. 
When we left the stadium at Trumbull high school, we had a really good laugh because a "golf cart" that they were using to transport disabled persons to and from the parking lot, was parked right up next our van blocking access to our lift. It just seemed so incredibly funny to us, I am not really sure why. Life is full of ironic twists sometimes. I imagine I was probably one of the few people who stopped and talked with the EMT's, and stood and vlogged. I have become completely unaware of whether or not people are watching me talk to myself into my camera. I actually find humor in the looks I get. 
Newtown came in second place at this competition. Norwalk High School has an incredible band, they are apparently our nemesis. I'm just in it for the ride. Every single one of these kids are working so hard. And no child who has the ability to perform should ever be taken for granted. That is how I feel anyhow.Enjoy the video. Warmest regards from my heart to yours.
Thursday, October 2, 2014
Our NY Jets Adventure, Thank You Marc Pintel!!!!!
Marc Pintel was a Hasselberger for a day!!!
This September we had a special event happen to our family. Marc Pintel, along with the Pintel Family Cancer Support Services provided tickets to the Jets Game on September 28, 2014 at Metlife Stadium. They purchased tickets for all five of us, and Marc worked extremely hard to make sure that the seats were all together in the wheelchair accessible area with access to the Lexus Clubhouse. It was very generous of them to provide access to this event for our entire family. Daniel Hasselberger is a 16 year old severely disabled and medically fragile young man. He was born with a devastating brain deformity called Polymicrogyria. Daniel's strongest ability is his acute vision and awareness of sights and sounds around him. He suffers from seizures, respiratory problems, stomach problems, can not speak, walk, and is fed by g tube only. He does however, have the most beautiful smile. So seeing that smile is like seeing the biggest and brightest star. His prognosis is unknown.
Marc Pintel also had a special sweatsuit made by Ursula, from Party planners. She didn't charge him for it, which was very kind of her. The sweat suit he wore had "Daniel's Number 1 fan" on the front and on the leg of the pants. On the back of his sweatshirt read "the Hasselberger Fund Rules". Marc took great pride wearing the sweat shirt and sweat pants at the game. It was very kind of Ursula to do this for Marc so he could represent Daniel and what he had done for our family. He was a "Hasselberger for the Day" on Sunday September 28th, even giving up an entire day he could have been spending with his son Spencer to spend it with the Hasselberger Family.
Additionally, prior to the game, Marc contact the NY Jets and asked them to send something special to Daniel. They sent him an autographed football, signed by #27 Dee Miliner. The Jets don't send out personalized footballs to everyone, so this was very special. We are going to put up a display case for this football and the many other nice things Daniel received at the game.
So we owe a very special thanks to Marc Pintel and the Pintel family, the New York Jets organization, Ursula from Party planners who made Marc's outfit, and everyone at Metlife Stadium as well who really went out of their way to help us.
Marc Pintel was extremely kind to provide this great experience to our entire family. We can't thank him enough, the Hasselberger Family enjoyed a beautiful day at the stadium, and the access to the Lexus Clubhouse made it very easy to care for Daniel. It was a wonderful day. Marc is a wonderful guy who wants to make the world a better place and wants to be inspiration to others.
**************************************************************************
The Day of the Jets Game, September 28, 2014, by Julie, Daniel's Mom......
I had spent the prior evening preparing and planning what we would need for Daniel. Daniel is 100% G Tube fed, and has medication needs through out the day. He needs regular medication, and medication for nausea, anxiety, and seizures. I woke up at 5:30AM, and took a very quick shower, got Daniel's diaper changed, got him dressed (WE DIDN'T HAVE ANY GREEN CLOTHES OR JETS CLOTHES). Prepared his feeding pump and packed up two enormous bags of supplies for the day. John figured out our driving directions and filled a cooler with drinks.
John, Thomas, Daniel and I left our house in Sandy Hook, CT at 7:00AM. We drove on this beautiful sunny Fall day out to Staten Island, NY to Wagner College to pick up Sarah, who we had not seen since August. I wanted to cry when I saw her come out of the lobby and walk across the bridge. Sarah is 18, almost 19, and studying Arts Administration. We are so proud of her.
Once we had picked up Sarah, we were all together as a family, and my heart felt so happy. I separated my brain from all of the worries that were eating away at me, and chose to have a special time with my children. Readers, you have to understand, life with a severely medically fragile child pretty much prevents us from doing things together. It is very RARE that the 5 of us get to go and do something FUN, together. Very RARE indeed. While John works very hard to provide for the family, I work very hard managing a complicated child and a complicated mess of financial pressure. I try to work when I can, but its never enough. Caring for a disabled child puts pressures on a family that far exceed the number of words I can paint on this canvas. So lets focus back on the sunny day of our NY Jets adventure....
We arrived at MetLife Stadium, and immediately the excellent customer service started. The parking lot guy made sure we went right to the best Handicap spot available. We have an over sized Ford E250 Conversion van and it is difficult to park sometimes. I need to have the van close in case Daniel has seizure, illness, etc and we need to get him out. I laid Daniel out in the van, and changed his diaper, and made sure he was all set to go in. John said we looked like dogs in a sea of cats. We did not have any green on!!! Being from Sandy Hook, you think we would have. But we definitely didn't have any Jets clothing. I wish we did, everyone looked like they were having so much fun. People actually tailgate, cook meals, have fun, in the parking lot. That really happens!!! I've only seen it on TV.
When we proceeded to enter the stadium area, a very nice man in a suit, I wish I got his name, came up and led us personally through the gate and help get our things properly checked. Everyone was so friendly, and so helpful. The sun was very bright and it was 80 degrees with a simply perfect clear blue sky. What a blessing to be having fun on such a gorgeous day. John and Thomas played the "toss the football" game outside of the stadium and of course John my "Mr. Athletic" got the Ball through the hoop and won a prize. Thomas and John got to take a selfie, but I'm not sure where that picture went.
About that time I received a text message from my friend, Marc Pintel, who had made ALL of this possible for us, that he was arriving at the stadium. We went in and upstairs to the Lexus Clubhouse area. That place was awesome!! To be able to sit inside and see the stadium outside, so cool. They had TV screens everywhere. Honestly, we felt very humbled to be there, it was way more luxurious than I thought it would be. We found where our seats were and we all just stood there mesmerized by the stadium. We had never experienced a stadium before like that. I took Daniel and the kids and went to look for Marc, I found him eating his lunch wearing his "Daniel's #1 Fan" outfit. He looked great!! I couldn't quite put my finger on it, but something about him looked different. Later I found out he had lost 37 pounds and looked terrific. I was too mesmerized by the sweat suit Ursula from Party Planners had made for him to wear. So sweet.
The kids got to play some games and win prizes in the Lexus clubhouse. Daniel even got his picture taken with a couple of pretty cheerleaders. They got pins, headbands, gifts from spinning the wheel, etc. That was fun.
The game started at 1 and we were all very excited. Actress and singer Jesse James Decker sang the national anthem, and it gave me chills. The Jets were playing the Detroit Lions. Thomas and Sarah were watching the game intently, as was John. Daniel was looking all around, way up high mostly. But he wasn't his normal giddy happy self. He had a stomach ache, and twice that day I had to bring him to the family restroom where I could lock the door, put him on the floor and clean and change him. That was very difficult, and probably the only time during the day that I actually cried. Some things are just never easy no matter where I go. Changing a terrible poop diaper on a 16 year old is one of the difficulties that most people don't realize special needs moms go through. Sigh. It was rough, and I made the entire area smell so bad that a cleaning person came right in after us each time we went in. Made me feel like a jerk, but what else am I supposed to do? Oh well.
The seats we had were in the shade, so we had no worries about sun. We had $6.00 cokes and $5.00 waters, and after buying lunch I had no money left to buy the kids a souvenir t shirt... but they understood completely. Three cheeseburgers and fries, $75.00. John had wanted to put together a tailgate picnic, I should have listened to him!!! But it was something we would never get to do again.
The Jets lost the game, sadly, 17 to 24. But it was a great experience. Why was it great for Daniel? Not because he is able to understand the game, but because the sensory feeling of the roar of the crowd, the music, the lights, and even some fireworks when a touch down was scored really entranced him. I never quite know how Daniel is going to react to things, but he seemed very happy.
This Hasselberger family has been through hell and back repeatedly for 16 years. We have daily challenges that push me to the brink of sanity. I don't sleep nights, and Daniel's medical care is astronomical. John and I love each other very much, but the stress can eat away at even the best of relationships. We are coming up on our 22nd wedding anniversary October 3rd!! But where I am going here is, we seldom do anything as luxurious as a Football game at MetLife Stadium. The kids were so excited, as if we were going to a theme park! Just being together, makes us happy. Having Daniel in our life has taught us that family is so important. When we get together, and there isn't financial stress, or medical stress, or anxiety stress, or stress stress.... we get a chance to let our guards down a little bit, and laugh. That is the true gift.
So we had a beautiful gift of watching a football game at Metlife Stadium. It was a day where everyone was in good health, and a trip that seemed overwhelming, really wasn't.
Marc Pintel left the game a little bit early, so we took some group pictures and said our goodbyes. We left the Stadium about 4:00pm. Sarah was returned safely to her campus by 5:00pm and we hugged and kissed good bye. Then we drove back home from New York City to Sandy Hook,CT, picked up Henry the dog from Grandma and Poppa and went back to our life.
Our NY Jets adventure was a success. It is all because of Marc Pintel, and his wish to give the family a day of FUN.
Thank you to Marc Pintel, the Pintel family, the NY Jets, Ursula of Party Planners, and everyone who made this day a reality for us. There is no measure to the amount of gratitude we have for just a little relief and fun for a day.
Much love,
The Hasselberger Family: John, Julie, Sarah, Daniel, and Thomas
This September we had a special event happen to our family. Marc Pintel, along with the Pintel Family Cancer Support Services provided tickets to the Jets Game on September 28, 2014 at Metlife Stadium. They purchased tickets for all five of us, and Marc worked extremely hard to make sure that the seats were all together in the wheelchair accessible area with access to the Lexus Clubhouse. It was very generous of them to provide access to this event for our entire family. Daniel Hasselberger is a 16 year old severely disabled and medically fragile young man. He was born with a devastating brain deformity called Polymicrogyria. Daniel's strongest ability is his acute vision and awareness of sights and sounds around him. He suffers from seizures, respiratory problems, stomach problems, can not speak, walk, and is fed by g tube only. He does however, have the most beautiful smile. So seeing that smile is like seeing the biggest and brightest star. His prognosis is unknown. |
| MARC PINTEL AND DANIEL HASSELBERGER |
Additionally, prior to the game, Marc contact the NY Jets and asked them to send something special to Daniel. They sent him an autographed football, signed by #27 Dee Miliner. The Jets don't send out personalized footballs to everyone, so this was very special. We are going to put up a display case for this football and the many other nice things Daniel received at the game.
So we owe a very special thanks to Marc Pintel and the Pintel family, the New York Jets organization, Ursula from Party planners who made Marc's outfit, and everyone at Metlife Stadium as well who really went out of their way to help us.
Marc Pintel was extremely kind to provide this great experience to our entire family. We can't thank him enough, the Hasselberger Family enjoyed a beautiful day at the stadium, and the access to the Lexus Clubhouse made it very easy to care for Daniel. It was a wonderful day. Marc is a wonderful guy who wants to make the world a better place and wants to be inspiration to others.
**************************************************************************
The Day of the Jets Game, September 28, 2014, by Julie, Daniel's Mom......
I had spent the prior evening preparing and planning what we would need for Daniel. Daniel is 100% G Tube fed, and has medication needs through out the day. He needs regular medication, and medication for nausea, anxiety, and seizures. I woke up at 5:30AM, and took a very quick shower, got Daniel's diaper changed, got him dressed (WE DIDN'T HAVE ANY GREEN CLOTHES OR JETS CLOTHES). Prepared his feeding pump and packed up two enormous bags of supplies for the day. John figured out our driving directions and filled a cooler with drinks.
John, Thomas, Daniel and I left our house in Sandy Hook, CT at 7:00AM. We drove on this beautiful sunny Fall day out to Staten Island, NY to Wagner College to pick up Sarah, who we had not seen since August. I wanted to cry when I saw her come out of the lobby and walk across the bridge. Sarah is 18, almost 19, and studying Arts Administration. We are so proud of her.
Once we had picked up Sarah, we were all together as a family, and my heart felt so happy. I separated my brain from all of the worries that were eating away at me, and chose to have a special time with my children. Readers, you have to understand, life with a severely medically fragile child pretty much prevents us from doing things together. It is very RARE that the 5 of us get to go and do something FUN, together. Very RARE indeed. While John works very hard to provide for the family, I work very hard managing a complicated child and a complicated mess of financial pressure. I try to work when I can, but its never enough. Caring for a disabled child puts pressures on a family that far exceed the number of words I can paint on this canvas. So lets focus back on the sunny day of our NY Jets adventure....
We arrived at MetLife Stadium, and immediately the excellent customer service started. The parking lot guy made sure we went right to the best Handicap spot available. We have an over sized Ford E250 Conversion van and it is difficult to park sometimes. I need to have the van close in case Daniel has seizure, illness, etc and we need to get him out. I laid Daniel out in the van, and changed his diaper, and made sure he was all set to go in. John said we looked like dogs in a sea of cats. We did not have any green on!!! Being from Sandy Hook, you think we would have. But we definitely didn't have any Jets clothing. I wish we did, everyone looked like they were having so much fun. People actually tailgate, cook meals, have fun, in the parking lot. That really happens!!! I've only seen it on TV.
When we proceeded to enter the stadium area, a very nice man in a suit, I wish I got his name, came up and led us personally through the gate and help get our things properly checked. Everyone was so friendly, and so helpful. The sun was very bright and it was 80 degrees with a simply perfect clear blue sky. What a blessing to be having fun on such a gorgeous day. John and Thomas played the "toss the football" game outside of the stadium and of course John my "Mr. Athletic" got the Ball through the hoop and won a prize. Thomas and John got to take a selfie, but I'm not sure where that picture went.
About that time I received a text message from my friend, Marc Pintel, who had made ALL of this possible for us, that he was arriving at the stadium. We went in and upstairs to the Lexus Clubhouse area. That place was awesome!! To be able to sit inside and see the stadium outside, so cool. They had TV screens everywhere. Honestly, we felt very humbled to be there, it was way more luxurious than I thought it would be. We found where our seats were and we all just stood there mesmerized by the stadium. We had never experienced a stadium before like that. I took Daniel and the kids and went to look for Marc, I found him eating his lunch wearing his "Daniel's #1 Fan" outfit. He looked great!! I couldn't quite put my finger on it, but something about him looked different. Later I found out he had lost 37 pounds and looked terrific. I was too mesmerized by the sweat suit Ursula from Party Planners had made for him to wear. So sweet.
The kids got to play some games and win prizes in the Lexus clubhouse. Daniel even got his picture taken with a couple of pretty cheerleaders. They got pins, headbands, gifts from spinning the wheel, etc. That was fun.
The game started at 1 and we were all very excited. Actress and singer Jesse James Decker sang the national anthem, and it gave me chills. The Jets were playing the Detroit Lions. Thomas and Sarah were watching the game intently, as was John. Daniel was looking all around, way up high mostly. But he wasn't his normal giddy happy self. He had a stomach ache, and twice that day I had to bring him to the family restroom where I could lock the door, put him on the floor and clean and change him. That was very difficult, and probably the only time during the day that I actually cried. Some things are just never easy no matter where I go. Changing a terrible poop diaper on a 16 year old is one of the difficulties that most people don't realize special needs moms go through. Sigh. It was rough, and I made the entire area smell so bad that a cleaning person came right in after us each time we went in. Made me feel like a jerk, but what else am I supposed to do? Oh well.
The seats we had were in the shade, so we had no worries about sun. We had $6.00 cokes and $5.00 waters, and after buying lunch I had no money left to buy the kids a souvenir t shirt... but they understood completely. Three cheeseburgers and fries, $75.00. John had wanted to put together a tailgate picnic, I should have listened to him!!! But it was something we would never get to do again.
The Jets lost the game, sadly, 17 to 24. But it was a great experience. Why was it great for Daniel? Not because he is able to understand the game, but because the sensory feeling of the roar of the crowd, the music, the lights, and even some fireworks when a touch down was scored really entranced him. I never quite know how Daniel is going to react to things, but he seemed very happy.
This Hasselberger family has been through hell and back repeatedly for 16 years. We have daily challenges that push me to the brink of sanity. I don't sleep nights, and Daniel's medical care is astronomical. John and I love each other very much, but the stress can eat away at even the best of relationships. We are coming up on our 22nd wedding anniversary October 3rd!! But where I am going here is, we seldom do anything as luxurious as a Football game at MetLife Stadium. The kids were so excited, as if we were going to a theme park! Just being together, makes us happy. Having Daniel in our life has taught us that family is so important. When we get together, and there isn't financial stress, or medical stress, or anxiety stress, or stress stress.... we get a chance to let our guards down a little bit, and laugh. That is the true gift. So we had a beautiful gift of watching a football game at Metlife Stadium. It was a day where everyone was in good health, and a trip that seemed overwhelming, really wasn't. Marc Pintel left the game a little bit early, so we took some group pictures and said our goodbyes. We left the Stadium about 4:00pm. Sarah was returned safely to her campus by 5:00pm and we hugged and kissed good bye. Then we drove back home from New York City to Sandy Hook,CT, picked up Henry the dog from Grandma and Poppa and went back to our life.
Our NY Jets adventure was a success. It is all because of Marc Pintel, and his wish to give the family a day of FUN.
Thank you to Marc Pintel, the Pintel family, the NY Jets, Ursula of Party Planners, and everyone who made this day a reality for us. There is no measure to the amount of gratitude we have for just a little relief and fun for a day.
Much love,
The Hasselberger Family: John, Julie, Sarah, Daniel, and Thomas
Subscribe to:
Posts (Atom)