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

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.

Hanging with Henry

This little dog is pretty incredible.  Everywhere I go, someone always asks me "what kind of dog is that?" and I say Coton, or Coton de Tulear.  And they go "huh? never heard of that".  The breed is amazing.  Its a somewhat rare breed in the United States, not AKC registered and do not wish to be.  They are known for being soft as Cotton.  Usually they are white, but sometimes come in other colors such as Henry.

His temperament is very friendly, submissive, and he wants to please.  He learns very quickly and he is intuitively aware of the physiological state of his person.  We are training him, and someday he will be an official service dog.

He is very very sweet, and sometimes quite spunky...but his intelligence blows my mind.

For now, he is simply growing up and being trained.  He is spending time in many places, and with many people and we will work up to more independent time with Daniel.

I never understood why people loved their dogs so much, until I had one.  And he is a love.


How did we get this rare little pooch?  Well, it's kind of a long story, but the short of it is that a very kind hearted woman in Ohio learned that we were seeking a dog for Daniel that would be a good comfort dog/service dog,..  next thing I know she has donated a pup to Daniel.

On July 23, Thomas and I drove out to Philadelphia and met Henry at the airport

Life has been full of blessings ever since.   So next time you hear "Coton De Tulear" you will know what it is...

God Bless...

May 30, 2013 SUMMER IS HERE!!!

May 30, 2013

It's a BEAUTIFUL day here in Sandy Hook, CT .  Seriously, the sun is shining and its supposed to be summer time warm today.  Hard to believe that June is around the corner.  May has been a whirlwind of concerts, plays, events, stressful things, sickness, broken washing machine, more concerts, Sarah getting her license, and more.   Daniel, in his quiet life, watches it all smiling from his wheelchair.

I am so very proud of my children.  Sarah has just excelled over the years and followed her heart.  Now she is getting ready to go off to college in August.  Unreal in so many ways.   Thomas is my little sweet big guy.  Taught himself how to play Trombone this month.  And can't wait for football.  I have to find something to do for the summer.

I still have not been able to get Daniel anywhere that he could swim, although I know how much he would love that!!

Fun with paint at school!!

Water time!!

He's been sick with an upper respiratory infection that created alot of congestion.   Off to the ER we went on Monday and the x ray did not show pneumonia!!!  Thank you GOD.  But he's pretty sick, even today not looking too well.   But his resilience never ceases to amaze me.  I honestly never know what to expect with this kid.

I am sitting here in my office writing.  My office that is also my bedroom because John exiles me in the middle of the night due to my snoring.  I have to remember to call the ENT to look at my sinuses.  I never have time for me.   Anyhow, just sitting here thinking about how many things kids are doing in the Spring, whether its sports, theatre, dance, or whatever.  Graduations every where.  Proms, and weddings and life changing events for families all around.

And then, there is my Daniel.  He is my buddy.  I adore spending time with him, and it is nice that he clearly likes his one on one time with Mom.  I just wish for once, there was some special event. Some special exciting new thing for Daniel.   So I have been praying that somehow we can figure out how to get a dog for Daniel.  I can't afford to buy a puppy these. days.   But a friend of mine is helping me reach out on Daniel's behalf to possibly acquire a dog for him.  That would be a big event!!

All I can say is, please be grateful for the gifts that your children have.  Don't be sad that they are growing up and becoming independent. It's what is natural and part of life's process.  Moving on and carrying forward to the next moments of life.  Time doesn't ever stop.  I have to remind myself to be grateful for the positive and wonderful family that I have.  Well, children anyhow.  But even with our dysfunction somehow they manage to be smart, resourceful, talented, and loving kids.

It's May 30th.  The sounds of birds and lawn mowers.  And in here, the sounds of nebulizer, vest treatments, oxygen machine humming and feeding pump whirring and beeping.  I don't like congestion.  Too many scary variables there.

Enough for now.  Praying for Daniel to get a dog somehow.  Praying for our family and that financially things will get better. Praying that I will finally pass my P and C exam. Praying that God will touch our hearts and heal the things that harden our hearts.  I am grateful.  Very grateful.

Peace out from Julie, Mom to Daniel, (bi-lateral diffuse Polymicrogyria secondary to CMV infection in utero. Non verbal, feeding tube fed, wheelchair, seizures, respiratory problems, othopedic problems, severe gastrointestinal reflux.)

Day 32 as a guest of this hospital

Slow but steady heals the pancreas, and hopefully the heart.  Yesterday Daniel had music therapy, and I think I definitely want to pursue this. He did very well and seemed very engage in the music.

It is Wednesday, January 9, 2012.  Daniel has been slowly SLOWLY weaning back onto his regular feeds and seems to be doing fair.  He has occasionally been wretching, but he doesn't seem anywhere near as upset as he did back on December 17 when we came in for the Pancreatitis.

Oh how long its been.  I really want to go home. I've been here staring at walls and ugly views..napping in between doctors and nurses coming in and trying to keep my mind from turning into mush.

music therapy

 Today Daniel is on 100% strength of his regular feed at his regular rate.  And I have to watch him very closely to see if he has any upset.  Labs will be drawn tomorrow, and if bad...then an ultrasound is needed.  If good... then we can start talking discharge.  

I look completely exhausted!!!!

I am doing the best I can. But you never sleep well in a hospital and I'm stir crazy in this room.  Last night a little child was screaming and screaming in the room next to me. I didn't recognize the language, but I knew the child did not want ANYTHING to do with his nurse.  It was so loud he may as well could have been in our room.

Music therapy

TPN nutrition still needed

trying to keep Daniel engaged

Whatever we can do to get his hands busy

But he has a hard time staying awake for long

Sweet baby shouldnt have to go through as much as he does

Staring at the sunshine through the window

Trying so hard each day that I wake up, to clear my head and live in the moment. But knowing that home is place that is also trying to heal and go forward, seems like a sad coming home.  But home is home, and the people are the same.  Hearts are just broken.  I have been so focused into getting Daniel well that falling back into a normal routine almost makes me feel depressed.  I don't really know what to do, or which way to go.

I'll find my way.  The one thing that remains constant is how much I love my family and love being a wife and Mom.  You think so much when you have so much time to think.

January 2013 Starting the year the way we ended the year

He and I are here.  It's January 4, 2013.  A disney movie plays on a portable xbox station.  Balloons are all starting to deflate.  The sounds of beeps and buzzers are now background noise, and when the doctors and nurses come in, its like seeing old friends.

He is in his bed, and his tummy is hurting but his smile lights up the room.  It was not too long ago from this moment that I really missed Daniel's smile.  A pink pitcher with ice water, the daily platter of fruit, donuts, and muffins.  Fairly bad coffee that has become quite good.  Two small suitcases that rotate clothes back and forth to home.  A bathroom that looks fully equipped with our stuff.  Piles of bills to pay, cards to write, books to read, and magazines.  The same ugly view out the window.  The same scratchy white towels.  Friendly faces, and helpers when needed.  Every single person says "can I get you anything Mom?"  Because in the Children's hospital they don't bother to learn your name, you are either Mom or  Dad or sister or brother.  Phones ring in nurses pockets and they answer "7-2" then rush away to where ever they are needed.  6:00am the orthopedic docs come in, and turn on the brightest of lights, smelling of strong cologne which contradicts their maroon scrubs, they check Daniel's incision and leave, usually forgetting to turn off the lights.  And the yellow protective gowns and gloves.  Being a "contact precaution" room is hard because everyone who comes in here has to cover up.   Daniel tests positive for MRSA....and therefore he can not leave his room at all.   Respiratory comes in to do breathing treatments twice a day.  Always a different person. 

One day a nice friend had a bag full of goodies delivered to me from the gift shop downstairs.  Magazines, cookies, slippers, a teddy bear...etc.  And then I pull out the People Magazine.  And I am home again.  Home to the sadness because on the cover of People are the faces of those angels we lost on December 14.

Christmas and a PIC line



At the ER on December 17 wondering what was going on.



Well.  It's December 26, 2012 and we just spent our second Christmas in a row as guests in one of our state's prestigious homes of healing, other wise known as hospitals.  Yale New Haven Hospital has been treating Daniel for Pancreatitis since we were admitted on December 17th.  Just having come home from his spinal fusion, it was not thrilling to end up back here.

In a nutshell, Christmas Eve... I stayed home with Sarah and Thomas. Got the gifts done, set it all up, missed Daniel and John terribly. Lit a luminary to remember the ones lost on December 14. And felt sad as a light mist of snow fell upon the town.

Christmas morning at home with Sarah and Thomas

A light snow gave a Christmas feel to a very sad Sandy Hook

Christmas was special simply because we all have eachother.  Even if we can't completely be together we know that we are going to be soon.  I hope.

Daniel went into surgery to have a pic line put in (into his arm) so we can feed him nutrition through an IV.  He did much better with the pic line procedure than he did with the Central line procedure last week.



After I finally got my PIC line put in on December 26, 2012



9 days in the hospital and counting. 





Amazing Artwork in the lobby




 I've had to deal with many emotional mind fogs.  I was lost and couldn't pray.  The hospital sent me an angel, her name was Kristin the hospital chaplain.  And she brought me a book of Psalms and the New Testament to help me cope.  Its been helping...

Yale New Haven Childrens Hospital.  We have spent most of December here.  A December the world will never forget.   And we are still here.  Daniel is still in great pain with re introduction of feeds.  And this hardship on our separated family is making us grow weary.

"Come to me, all you who labor and are heavy laden, and I will give you rest.  Take my yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls.   For My yoke is easy and My burden is light."  Matthew 11:28-30

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.