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.

 PLEASE ENJOY THIS VIDEO OF "MARCHING BANDS AND UNFRIENDLY GOLF CARTS

On living in Sandy Hook, a reflection of thought

On living in Sandy Hook, a reflection of thought

It's cold. The sun is gently shining and reflecting off some chunks of snow still left on the tree limb outside the window where I'm sitting.  I have just pulled myself away from facebook.  There are link after links of touching videos, articles, stories, and pictures of the lives so violently taken from our little town.  Our collective focus is reaching out once again to unite us in thought and bring us together so that mentally we don't have to face our fears and grief by ourselves.  There was a giant crack in the universe on December 14, 2012.   Evil came in through the crack, smashing in the glass and destroying love.   Little people, and loving adults taken in merely minutes and seconds.  Leaving behind a feeling of hopeless helplessness. as we just pushed ourselves though day after day.  The winter ended, the Spring came, the sun brought a beautiful spring and summer and hopelessness had transcended into helping hopefulness as the true human spirit emerged and our community embraced the concept of honoring those lost by being kind, choosing love, and paying it forward.

That is Mac the Monkey, he came to visit

We, my husband and three children,  live but a few miles from Sandy Hook School, where two of my children attended for their elementary years.  We live less than a mile from the home of the young man who went crazy with evil intent and drove to that school never to come out alive.  We see the balloons on street signs, sadly blowing back and forth in the wind reminding us of a special child's birthday.  We drive by the homes of the heart broken families every single day, multiple times, and always think of them.  Always. Every time.  We attend church together, we pray together.  Siblings go to school together.  We go to the Big Y and see one of the Mom's doing her shopping get stopped by a friend, and given a hug.  And we keep going about our daily business.  But sometimes you find yourself reminded, and it is as if we are tied to this place by both our grief and our love for each other.

Our children have been altered forever as they cross the the next channel to the other side of their new grade, new class, new friends, and on to college.  It can be really hard to explain the sick knotted lump we feel each time we drive through the center of  Sandy Hook, because sometimes it just has no descriptive definition using words.  It just is.

Living here, as we have since 1994, has been a blessing.  Two of our three children have had a life enriched with community, great educators, music, theatre,  spiritual love, sports, security, and great friends.  So many happy child hood memories.  And now, their elementary school has become somewhat of an American Horror Story location.  Sucking away those memories and replacing them with visual images of brutality and bullets.  We try to return to the happy memories, but as humans, doing that still breaks our hearts.  They walked those halls, went to those classes, knew that school as their comforting home for all of those days of their childhood.

Living here we try to grab hold of that life line which is hope.  We encourage each other with warmth and kindness.  We turn away respectively and give people their privacy to grieve and to experience what they need to experience as human beings.  We know each and every name of the 26 lives lost that day, and we will never forget those names for the rest of our lives.

For me, living here has been a road of ups and downs.  Prior to 12/14 our neighbor tragically lost their son on 11/8/08,  and grief was already living on Bennetts Bridge Road.  Prior to that, about 28 years ago, my direct neighbor Betty lost her sweet 3 year old daughter Bridget, struck and killed by a car on Bennetts Bridge Road.  Grief already lives here. And as a very active member of the Special Needs community and support groups, I can not even tell you how many children we have had to say goodbye to who have the same condition as Daniel, or who are sick with other conditions.

Living here,  there is life with Daniel.  The one of my two children who never attended Sandy Hook School because he was too medically fragile to be mainstreamed.  Daniel always came with me though, and many families remember me always trying to get Daniel's wheelchair into a classroom where an event was taking place.  Daniel was always so happy to be there.  Sarah and Thomas were always the kid "with the brother in the wheelchair".

In my home, especially in the winter time, I feel a great urge to let melancholy and depression just sink in like a cold avalanche of snow.  And yet, I too grab onto the life line.  Daniel is now 16 years old.  Our life is far from normal. I'm under tremendous pressure every day.  I worry about seizures and respiratory arrest especially when he is at school and I am not there.  Daniel is a magical child, who has captured the hearts of so many Newtown children and adults.



And it spread to the entire world when we had a card shower for him, and he received almost 900 birthday cards, and gifts.   Yes, I wrote 900.

Daniel does not have the same emotional connection to 12/14 that so many other children do.  He doesn't have the cognitive understanding of what happened that day.  He probably remembers how sick he was last December 14th, but really he is just as simple as knowing what makes him happy, and what fascinates him.  Perhaps I underestimate him.  But I like to believe that he is a protected spirit bringing love and light into our world.  He doesn't have to feel many of the complicated emotions and fears that the rest of us do, and that is not a bad thing really.

Growing up in Newtown, CT

Living here in Sandy Hook, CT, tucked away in our house on Bennetts Bridge Road, we are doing what everyone else is doing. Continuing to proceed.  However, we have new priorities in our hearts, or stronger focus in our minds, of being kind to others.  It is critical in the human spirit to stay happy by helping others, by paying it forward.  I believe that God, and the spirit of God, works through us, through our relationship with the living God, to spread His love and good works.  Opening your heart to let kindness in, allows that space and light for God to fill you with his love.   And we can do this, while we grieve.  We can continue on.
Living here in Sandy Hook, CT can feel like an anomoly at times.  Ironically a mix of very different people on very different paths.   Some people are extremely wealthy and still maintaining a life that is self focused, but others have changed and are realizing that their very neighbors may need help.  The stories of kindness on Facebook, are amazing.  People are starting to pay attention to helping their neighbors.  To slowing down and really "seeing" who we live with.


As a Mom, living here, in this house, struggling to stay on top of the needs of a very fragile son, I often wish that there was more I could do for others.  I can hardly pay my mortgage, and Christmas is a time of stress and anxiety.  But 900 birthday cards???   Obviously my son, without even trying, has brought something special to so many people.   I can share his love, I can let people know how much the Special Needs community needs help.  Many families are very proud, but they are struggling.  And if people could just realize the magic, and life changing force that a child like Daniel and so many others have, they would be touched and changed forever.

We are here.  In this house.  With this boy. Who is non verbal. In a wheelchair.  And very fragile. He is finally doing well in a December (the past two have been in the hospital) So if that is the Christmas gift this year, we will take it. It's cold. We can't go out with him. His van doesn't drive well in snow and he can't tolerate the cold temperature.  What can I do?  Just think about the little drummer boy, and it will come to you.

What is it like to live here in Sandy Hook, CT?  Its beautiful.  Simply beautiful.  Evil will never win here.  Love wins.  We really do choose love.  I hope you will too, where ever you live.

Julie Hasselberger

12/12/13

Here on Bennetts Bridge Road,Sandy Hook, CT where "raising Daniel Hasselberger" comes from..... please read

It is part of things.  You know, history.  Things that happen.  And as much as we become soldiers of resolving to choose love, and to be kind, history can not be changed.  Each moment, becomes history.  We are creatures, who for the most part, want to live a life of love.  A life where we fulfill whatever our interests are, and support whatever our goals are.  And then really bad things happen.

Here, on Bennetts Bridge Road in the small town of Sandy Hook, CT we had just moved across town and into this house when September 11, happened. My youngest was only 6 months old.  It was such a profoundly horrific thing that all life just stopped as we knew it.  People, being people, got back out there and back to their lives.  But I'm sure there are many, directly affected, who are never ever going to face the day in any way remotely close to how it was on September 10, 2001.  I remember so many shocking and strange memories and feelings from that day.  But I didn't see the smoke, hear the crashing of the planes, see bodies falling from the buildings, feel the earth shake as the towers fell, or stand for weeks with a lit candle praying for a lost loved one.  

On November 8, 2008, a beautiful young man, at the tender age of 13 was taken from us too suddenly.  A neighbor, a friend, a vibrant and smart young man.  He had ridden the bus with my daughter since we had moved here, and she started first grade.  His passing altered her reality and security, for the rest of her life.  I know that there was so much pain not expressed, but it was not supposed to happen.  A 13 year old boy, sudden and tragic, doesn't die and leave his family.  We miss him.  We think of him.  We pass his family's home every single day.  And I recall shuddering and crying for his Mom.  And I recall that my daughter would never again ride the bus to middle school without him there anymore.  History.  A moment in time that didn't just mark an event, it marked a significant change in the path of a plan for a happy future.  Sandy Hook, CT mourned the loss of this child, but time went by.  He has been remembered, and honored.  And will always be a part of who we are.


But, last December 14, 2012, when Adam Lanza, a neighbor, decided to take his family guns and go on a murderous rampage in a quiet sleepy little town, history became black. Dark. Painful. A black hole of confusion. Wonderful families with plans of great futures, losing their 6 and 7 year olds.  And teachers, just doing their jobs and supporting their own families, became heroes, and loss lives too.  All right here.  All within a few miles of where I sit and write about "Raising Daniel Hasselberger".   As I drive down my road now, I pass the home of our friend who passed in 2008, and I pass the homes of 4 or 5 neighbors who buried a child less than a year ago.  And as much as we pull together our healing resolve, trust me, this is an incredible town, it still hurts us.  We all remember where we were that morning, what we were doing, where we were driving.  There is always a sickish feeling when I pass the Sandy Hook fire department and the road that lead to that school.  Because my kids went there.  And it was a happy wonderful place for them.  And its now a black, solemn place, hallowed ground.  Evil walked there.  And no one else wants to.

I was tending to Daniel then, who was very ill and in the hospital.  Now, he is quite well.  And we are so pleased with how much better he is as we face this Fall.

But history, even though it is the past, pulls at our hearts when we least expect it to.  Sandy Hook, CT sometimes feels like just another town, roads I pass to get to the bank, gas station, grocery store, schools...  And other days, there are reminders that you see in the form of remembrance stickers and magnets on the back on almost all cars.  Green.  Green and white for Sandy Hook.   It will never be the same here.  How could it ever.  Nor should it ever.  History changed the road.  But we still live here.

And in my house on Bennetts Bridge Road I raised my daughter, and did my best to give her as much as I possibly could.  Even though we struggle and scrape, her future was so very important to me, to get her out of this town, and somewhere else with new history to make and face.  And in my house on Bennetts Bridge Road, I am watching this young man named Thomas, emerge.  He is brilliant at music, bass instruments likes Baritone sax and Trombone.  Great kids, a part of the flow of the school system, participating in so many activities, mostly related to music and the arts.   And also in this house, we are raising Daniel.  Daniel who will never speak words, who will never express to us how life is affecting him.  He just watches.  His eyes absorb. His ears hear. His hands feel.  And I admire his never ending smiles that come at the times when you think he really should not be smiling now.  All of those surgeries, all of those physical and mental impairments, all of those seizures, and spasms, and cramps, and pains.  And he laughs like he has just heard the best joke ever, every day.

Does history change a child like Daniel?  I don't know how much he is mentally aware of bad things. But I do know that he senses my physiological changes.  He participated in activities designed to help the kids heal and persevere.  He met the Giants!!!  Did he really know who they were?  Maybe.  But they treated him like a king and it made me feel included that day.   Daniel wakes up to the same routine, pretty much every day.  And most of his day is spent monitoring his physical status.   I never knew if he understood fully the change to our community, but I do know that the dogs who came into his room significantly affected him.  There were a few who like him particiularly alot.     And next thing we know, to make a long story shortened, a beautiful dog was donated for him from Ohio.   History made that happen.  Without 12/14 we would not have had dogs in school.  Without Dogs, we wouldn't have seen how much a service dog would change his life, and now that we have Henry.  Well, he is just this beam of joy and intelligence.  He has a calming effect on all of us.   Because raising Daniel in the sense of surviving financially is stressful. Painful. and just plain crappy sometimes.   Henry, has lightened the load, except for the vet bills and the expensive dog food.

History.  Loss.  Pain.  Shock.  Grief.  The sun comes up, the sun goes down.  We who have faith believe that God is holding us up, somehow, as we say good bye.  Like we did to our friend Ryan last week.  Daniel's only friend in school.  So soon. Too soon.  And I am no longer questioning if Daniel is mentally aware when changes happen, I am certain that he is aware.  He has missed Ryan so much.  And the energy from that wonderful boy is now in another form.

So here, on our road, on Bennetts Bridge Road, in Sandy Hook, CT we have experienced 9/11/01,  me being terminated because I had a disabled son, financial hardship in great form, countless surgeries for Daniel, seizures, pneumonias, many late night 911 calls, the loss of dear dear Brennan, the loss of my brother in spirit, Ed Muratti, more sickness and exhausting sleep deprivation, and December 14 of last year.  And now, most recently, the loss of our friend Ryan, also a Newtown student now in Heaven.

So we release an orange balloon into the sky.  We see the balloons marking special birthdays.  We cry.  We try to be joyful.  It's really pretty damn fucking confusing for me, most of the time.   I'm happy, I'm sad, I'm inspirational, I need help, and I do not have a choice.   I must get up.  I must change that diaper and smile at the sunshine filled boy's face.  And carry on.   Because I believe that if we do not live our life with JOY then evil wins.

And joy, is a part of history too.  Far more than we give it credit for.   That is why I do what I do. I am a Mom, with a goal of happiness for the future of my family.  I know its a big pipe dream to think we will ever rise above the clog of beaurocracy and neediness, but as long as I see that smile it puts wood on my fire.

How do you perceive history.  Sandy Hook, CT has become somewhat of an anomoly.  And I end this by saying that losing a child or a close family member is horrible.  And the pain still feels fresh forever, and prayers are needed.  For those who are quietly suffering from what one evil moment in time did to shatter their lives.

Sandy Hook CT, 26 angels, the road between Yale and Sandy Hook, Pain and Pancreatitis

December 20 2012

We have lived in Newtown since 1994.  All of our children are growing up here.  We love this town. When Daniel was diagnosed with his disability and we knew he would never walk...we found a new house and moved from Newtown to Sandy Hook.  Our home is surrounded by beauty, country roads, lovely old homes, scenic farmland, horses grazing, and most of all wonderful loving families.

When we lost a young man, a dear friend and neighbor, in 2008 and had to say goodbye to a 13 year old precious 8th grade boy, I remember feeling that there would "never be a moment so full of grief and sadness in our town like the day of that funeral."  Our Brennan Merrick, who left Sandy Hook on November 8, 2008 and is missed and thought of every single day.

But on 12/14/12, an enormous storm of tragedy fell on top of those old memories of sadness, joining them and making them grow into a worldwide horror.  And the surreal nature that there were more in our neighborhood who would be buried.  So many more.  Has transformed us  with so much sadness and shock.  The world responded.  And I picture Brennan, in the heavens, holding hands with 20 little children laughing and smiling.  I do not envision them sad, I see them as light.  As peace.  As pure a form of love that there ever could be.

But yet... it hurts.  This is my neighborhood.  This was my children's school for all of their elementary years.  I remember how the little school smelled, looked, and all of the fun memories that are documented in my years and years of photographs of school concerts, events, fairs, Mothers day tea, One school one read, Walking Wednesdays, Brownie troop meetings, Halloween parades, Wax Museum day, and on...and on... and on...   Sandy Hook School is part of who we are.  Its a very important part of who we are.  But its not "the building" it is the people who teach and love the children.

What happened on Friday morning, 12/14/12 tore away at the very core of how much we love those people and that school.  And the loss of those precious children was a reality that shocked us, and ripped our hearts out.  We all feel sadness, at different levels, at different times... but our town...our entire town of Newtown is grieving, and hurting.  The pain is there, in the stores, in the schools, on the streets, in the churches.  We can't do anything to reverse time, and all we can do as humans is take steps forward into time.

At the same time, on December 14, 2012 Daniel...who had been home since December 10, after his successful spinal surgery, began to vomit.  Began to cry.  Began to scream and cry.  We took him via ambulance to have his stitches removed and he clearly was upset so the doctor ordered blood work and chest x rays.  That was Friday.  We we returned every news station showed our town.  The killer lived on Yogananda!!! How could THAT be true...so close to our house.  And although the names had not been released, we knew that the state trooper at the end of the McDonnell house was not good news, and the state trooper in front of the Pinto house, and the Kowalski house, and a feeling of gut wrenching pain.

And ironically, Daniel was feeling pain.  SO much pain.  All weekend.  He was wretching while our hearts were wretching.  And I had all that I could do to keep my focus on Daniel.

On Monday morning, December 17, 2012 at 6:30 am the hospital called to tell me Daniels bloodwork did not look good and that I should bring him in.  I decided to take my other two kids out for a quick visit to the memorial and have breakfast before we left for Yale because I knew we wouldnt be coming home.  The nurse stayed with Daniel.  Sarah decided not to go.  And Thomas and I bought flowers and went into town.   The amount of reporters and photographers was very unsettling, awkward, and uncomfortable.  We wanted to privately do this, and yet there was a circle of cameras focusing on everyone.  Had a quick meal at the Sandy Hook Diner and got out of downtown as fast as we could.

The ambulance was called for the transfer, I packed a bag, reluctantly kissed my children goodbye and headed off to Yale Children's Hospital Emergency room.  Daniel still wretching, but on heavy pain medication.  His wretching was certainly hurting his spinal surgery incision, I'm sure.

BALLOONS FROM COUSINS LACY AND JASON CABRAL

And we were admitted.  Monday afternoon to room 242 on 7-2...that is where I sit writing.  Daniel's pain was increasing, and they couldn't determine what possibly could be wrong because his incision looked perfect. His lungs were clear. He had no fever.  So the doctor ordered a full work up and somewhere in the night they told me he likely had something wrong with his pancreas.  The vomitting got worse, and he would not stop crying.    I had the pain from Sandy Hook and the pain from Daniel's tears sucking the breath out of me.

We finally stopped his feeds, and let him rest.  They sent us for an ultrasound yesterday, and it did verify a very inflamed pancreas.  Especially since Daniel screamed when the technician touched his abdomen.  Awful.



Mac the PMG monkey



Cards from STARR volunteers and classmates at Reed Intermedicate School, Newtown

Today is Thursday, and I never dreamed we would be here this long.  But he needed to be taken off of his g tube feeds, which posed another big problem, his nutrition.  He is so thin, and he is healing from major surgery.  Not feeding him is making him week.  He is pale, feels horrible, can't take a breath without a wince.  So they put him back on IV pain medication.

And here we sit. So close to Christmas.  Feeling like we did last year when our entire holiday was spent in the ICU.   I have nothing ready.  Have no gifts wrapped. No cookies baked,  No Christmas cards to send.  No gingerbread houses made.  Instead I'm sitting in the hospital.  Praying for my community.  Not even thinking about any kind of celebration.  Except the fact that its the celebration of the birth of Jesus.

Incredible.  The events of this week.  In my ordinary blog is description of the most incredible horror our nation has seen.  In our little town.  In our little school.  To our little people and their teachers.

Pancreatitis has caused Daniel great pain.   Pain is a term that can be so far reaching, or so specific. 

We wait to see what will happen.  Daniel may need to have a PIC line placed to receive IV nutrition because he isn't tolerating his liquid formula in  his stomach.  He needs nutrition in order to heal from his surgery.   And I'm simply sitting here, wondering.  Praying. Thinking. Hoping. 

I have not dared to open the mail, or look at my bank account.  I just don't want anymore fear right now.  The pressure to get by is relentless, stressful, and my brain is not in the mood.    We will do Christmas, I'm sure, for the sake of the children.  But we do not feel "tidings of comfort and joy".

Peace and Blessings to Sandy Hook, CT.    May the angels embrace us in their wings.