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 AND DANIEL HASSELBERGER

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

My motivational Moment of the day

Facing the Giants - It's all heart from here

Everyday when I wake up, there are giants looming all around me.  Waving weapons of responsibility, advocacy, fixing things, bills to paid, phone calls, piles of papers, things to review, appointments to get to, procedures to schedule, earn money$$$, work harder, house is falling apart, kids need clothes, therapy, college, mortgage, utilities, doctors, supplies, medicine, laundry, manage it all giants.  Giants each wearing a jersey that says what they are. They intimidate me and make me want to pull the covers over my head.

But I have no choice but to face them.  There will be a day when the giants become virtually insurmountable and the decision to push will not be an option.  We are that way, when we protect a child.  Nothing else matters.  And when you have a child with special needs, who is incapable of doing anything for themselves for the rest of their life, indirectly that is a giant you have to dance with for the rest of that child's life.

This video is not about a highschool football team.  It's about the gift of leadership.  This coach pushes Brock farther than he ever thought he could possibly go.  Because Brock couldn't see, and he just had faith in himself and in his coach.   "It burns", "I know it burns!!!".... "It's all heart from here"

I feel like life does that to people.  People go about a life, that is safe, controlled and comfortable.  They have what they need, and they proceed in a routine way.  No disabled people, no sick people...just normal life.   

And then there are the people who face great trials. The birth of a severely disabled child, cancer of a loved one, loss of a child, losing a job and all security, and whatever Giant "Giant" falls upon them.  

You then put your faith to the test.  It's then that you realize the true meaning of  "its all heart from here".  Blood, sweat, tears, pain, and you just keep on pushing.   Putting yourself out on a limb and leaving it all in God's hands you just keep on going.  Then you fall down.  It's give up time. It's time to just say forget it, I'm too weak, it burns, it hurts too much, I can't do it.  And while you lay in your defeat a voice says to you...  "Give me your best Julie.  This is NOT your best.  Get up.  Don't stop. It's all heart from here.  I'm here for you. I am with you. I love you. I will sustain you. Get up. You are better than this. Don't fall to despair and don't fear, because when you get to the end of this difficult road, it will simply turn into another difficult road.  Winding and winding and winding.  But I will be here.  Don't stop.  You will be rewarded.  I know it's hard.  I know.  Don't look at others.  Their choices are different.  You have no choice.  I know you won't stop. 

So, I take a shower.  Drink 3 cups of coffee.  Pull my messy hair up in a clip and sit down at my desk, facing those giants.  Or sometimes I just ignore them.  Or sometimes I just pray for help.  Or sometimes I need help.  But I don't go back to bed. I don't sob into my pillows until Daniel comes home from school.  I make calls to doctors, I call about bills, I negotiate with creditors, I figure out the oil price plan, I order more diapers, I order more medicine, I schedule a 6 month assessment with DSS, and then I go outside to walk my little dog Henry.  We practice his commands, and we take a walk.  I am definitely not alone.  

Faith lifts me back up, every time I remember to ask God to please please please lift me up.  

I can't wait until Daniel gets home from school each day.  It's a gift that he's healthy and with me.  And it's all heart from here.

Sister leaves, Football struggles for Thomas and Henry howls and makes us laugh

August 20, 2013

There is a warmth today that is uncomfortable. I washed Daniel's van and it became quite clear that I chose a project I wasnt going to enjoy today.  

Daniel is, after all of my bragging about his healthy state, suffering from gunky congestion today.  It just goes to show you, that when you least expect it, expect it.  And we are managing that as we always must do.  Daniel finished up his STARR summer school program, and is basically hanging out until the rest of August melts away and school starts again on the 27th.   He had physical therapy today, and his hamstrings are terribly tight.   I need to do more.

Sarah is just about finishing her packing for her move to college on Thursday.  I am pretty sad, as most Mom's are, but she is the sunshine and the fire in this house.  Her vibrant personality shakes the walls and fills the halls.   I just don't know how it will be without her.  Thomas will be busy, but I know it will be strange for him to no longer have her to talk to.  Daniel, of course, is unable to speak and communicate with us on an advanced level.  She's heading to Wagner College to study Arts Administration and she'll be very close to New York City.

 FOOTBALL 2013....

Football started up the first week of August.  Thomas has been struggling with some emotional issues, and I worried that he wouldn't do well.  He got into conditioning week and just felt like he had no passion for anything anymore.  I reached out to the coach and to his trainer at the NYA to see what I could do to help him, what did they suggest?   But sometimes questions are not responded to.  People are busy.  I'm the one worried about this Thomas.   This Thomas who is brilliant.  Who, we discovered has perfect pitch.  Who, taught  himself to play a Tenor Trombone with an f attachment in a few short weeks.  Now we are paying off a Baritone Sax and a Trombone.   This Thomas who played and did an improv solo in a jazz band consisting of adults and highschoolers.   

But Football...  he likes the game.  He just feels like he doesn't understand how he can "EARN IT" if he never gets the chance to apply skills, and take instruction.  I just look at him....yes he is a bigger guy, and yes he needs to be faster, and to move his feet.  But about that, he is sharp as a tack, smart, and eager to please.  Last night at practice he hung off to the back of the pack, he looked down...and I was worried about the things that are red flagged in therapy.     Well, anyhow on the football thing, he is not fast... and even though everyone tells him he has potential, he seems to spend so much time just standing on the side or kneeling.  I don't claim to know that much about the sport.... but I do wish the kids who are in need of "earning it" time, got more time to try.   Maybe if John had been more patient and more involved, and got in there like the other Dad's Thomas would try harder.    Instead he has me...   THAT lady, with the wheelchair and the little black dog.   Urging him on, in her mind, as he struggles through the running.

The other parents tell me encouraging things, but I have a boy who comes home feeling like "crap".  I don't know what to do.  Except stay positive.   

Boy do I love the sound of that saxophone when he just picks it up and that amazing bass sound just comes soothingly out of the horn.   

I am doing something to  help both Thomas and I now that Sarah will be in school and I have one less child to concentrate on...  We are going to see a nutritionist and get on a healthy eating and exercise plan.  Both Thomas and I are overweight, and I know that it will be better for both of us.

So already the summer of 2013 is winding down.  The Sandy Hook School kids are spending another year in Monroe.  Thomas is going into the 7th grade and that means the Middle School.  Moving along.

Daniel...  Daniel just stays in his program at Reed School.  He isn't progressing along grade to grade...because he doesn't have a grade.  He just has "Daniel's speed".  The same bus, the same room...and all around him... new 5th and 6th graders.  I don't know how I really feel about that.  Is it the best thing for him since he is now almost 16?   But what other options would I have for him.  I don't know.  I need to know.   

And finally, there is little Henry.  Henry, who at this moment is 11 weeks old and 5 pounds.  Our little dog, who came to be with us in July...  who is in full blown puppy stage.  Henry is awesome.  I'm trying to figure out what the training is going to look like for him.  I suppose I had thought it was going to be somehow more organized, and yet I am confused as heck.  I am reading the books, and following instruction but he will be going to a puppy behavior class in September.   I know he'll make a great little service dog someday for Daniel, but  we have a long long way to go.   I have NO IDEA how to train him to respond to a seizure, or stay by Daniel's chair.  It's all a new and exciting adventure.

It's almost time to prepare for football again.  Thomas told us last night that he would push harder and try harder.  I just wish someone out there was in his corner.  All of those coaches are busy guys, getting the best kids into the best spots and preparing for games.  It's all about winning.  I understand that.  And for the parents who have those high speed athletic boys out there, always starting, superstars in multiple sports...  they have fun watching their boys play.   But the parents like me, who have a boy with a heart of gold, who never gives up, but feels disheartened, who watches quietly while his buddies out run him and go out to make plays.  He runs slow, but the doctor said the pain he feels is related to the diaphram... not the lungs,  Asthma is better...      We had one said therapy session where he burst into tears and said he is tired of being "the big slow kid".  So back then I began to encourage him back to better nutrition.   

Well...  a Mother's love for her son is very different than a father's expectations.   I have a son who will NEVER walk, talk, or play any sport, or walk in a parade, or go to college, or run a suicide or a sprint.   The degree to which I have to manage this, trumps out alot of things that I know I should be pushing.  Such as the athleticism of my son.  

And sometimes, I think about how my own heart gets sad and lonely and I know my boy is like me.  Surrounded by people who like you, but feeling lonely because you are so profoundly different.

I had always hoped that when Thomas went to the football field, someone would have talked with him, encouraged him, gave him an extra push, and extra shoulder.  Because he's had a hard life.  He's seen so much adversity and pain.  And he is only 12.   And he lives in it every day.    But like Daniel, I am apparently also the only one looking out for Thomas's happiness.   But I don't want to get involved with the sports, because I feel silly.

The music, on the other hand, I will do whatever it takes to keep that music flowing.  He is gifted, and in love with music.  Afterall, we all need a way to express our soul.  Even a 12 year old boy.

Daniel's little dog is asking me to get him outside to potty.  We will find a shady tree.

Football 2011

Watching the Game with Dad

This year my youngest, Thomas started playing football.  He is a big boy and we knew that it would be good for him.  He pushed himself diligently through all the conditioning.  He was and still is the last one running the laps.  But he never complains.  He is such a great kid.  But when I took Daniel to the first day of training, I didn't expect one of those "sad Moments" to hit me.  I thought I was past that.  Watching the boys...playing and running and catching...  Laughing and making friends.  I looked at Daniel in his wheelchair, quietly looking above the boys on the field at the trees and the clouds..   And tears began to stream down my face.  I felt alone.  I felt different.  I longed for a peak of what it would look like to see Daniel run and laugh.  I longed to hear what his voice would sound like.   And I left.  The next day, Thomas said to me...  Mom... don't go, you know everyone is going to stare at Daniel and you are going to feel sad again.   But I went.  Because it wasn't about me or Daniel...it was about Thomas.     And as the time went by, the families began introducing themselves to us...and Daniel began to be a very welcome spectator.  Some of the Mom's even pitched in and bought him his own "Nighthawks" training jersey.

Its a very hard thing....you see....  To be moving two normal children along a path of growth that is "normal" and progressive into their future.  And at the same time have a young man with you, who is also getting older, but who has no capacity to ever be independent.   Does it break your heart?  Hell yes.   But I tell myself every single day...shake it off...  they all need you.  Daniel is who...he...is.  He has a unique life and you can not "what if" yourself to death.

And I succumbed to hollering and cheering for the team with the rest of the families.  And Daniel continues to watch things in the sky.

Football...  Thomas?  Who knew?     Oh man...writing this post just made me cry.   Dear God please help me provide for this family.