What's new and all that jazz for today....

Sarah Hasselberger Graduiating June 22, 2013 from Newtown Highschool

Today is Tuesday, March 26th.  Every day I have a reminder on my phone that says "Daniel Blog done today?" And with all great intention I do wish I would get in here.  But here I am.  It is a TOTALLY gross gloomy day.  Sky is gray.  Trees, gray.  Ground, gray and mucky.  Spots of dirty snow here and there. Chilly outside and damp to the core of my achy bones!

Daniel is one hell of a spectacular miracle child because I really can't believe how healthy he is now after all of the December trauma with the surgery, and the Pancreatitis.  But he's been released to standing again.  And the goal, my goal, our goal, is to get him gradually more mobilized again.  How exactly depends on how this new spine of his reacts and responds.  But his legs are weak.  

So.  Many many many many doctors appointments lay booked on my calendar, which can be very stressful to navigate around the other things happening in the Hasselberger Family life.

Sarah and college.  She has been accepted at several colleges and her favorite at the moment is Hofstra.  My favorite for her as well.   But even with merit grants etc we still have a large out of pocket expense.  So I am sitting here looking at a giant pile of scholarships.  Praying that its all going to come together.  She is bright and shiny this girl.  So smart, working so hard all of the time.  School work, singing, dancing, viola, acting and all that jazz.  She is leaning towards a major in business and drama.  Maybe a minor in musical theatre?? But its not completely decided yet nor should it be.

It's a strange thing, watching Sarah get ready to go off to college, and knowing that Daniel would have been just two years behind here.  He seems so much younger than his age.

I'm confident that if I bust my ass just alittle bit more I will be able to swing it.  Thank God for college savings plans.

Gosh its so gray.  Depressing really.  Sandy Hook is depressing right now.  I can't say its easy to "find a happy place" around here.  People are trying, so much kindness.  But it is eerie here.  And sad.  My neighborhood is the part of town where several of the angels lived.  Its also where the killer lived.  That does something to your mental state.  It is unavoidable.

Well, I have to get back on track with search for grants for Sarah, and continuous searching for help with Daniel/home expenses because I can't work full time.  Even when and if I can, I have been out of the workforce for so long that my MBA and all of those years of HR expertise and ignored.  That too is unavoidable and frustrating.

I have a dream.  My dream is this.  Daniel has a financially secure home and all that he needs with NO medical bills for him and the family.  AND also in that dream is watching my children go to college and make a life for themselves.  They have had a challenging life.  Alot of pain and struggle.  But alot of love.

And when time goes by a little bit more, Daniel is still here with us.  Should we ever be able to retire, he will be with us.  Ensuring that his life is accommodated for... also part of that dream.

It's an uphill battle.  I am fighting off the demons while I climb Julie mountain pushing a wheel chair.  All I know, and what I believe is that God has a wonderful plan for us at the end of this uphill journey.  When we get to the top we will have a lifetime of accomplishment to look back down upon.  All of these challenges, as hard as they are, are life lessons.   I have faith.  But when it is gray, and gloomy.  And your body hurts because you are ill with fibromyalgia and too exhausted to care for yourself, and the pile of bills and lists of things to research and advocate for keeps growing...  well ...  it's hard to see the blue sky through these gray yucky clouds.  But its there.  I believe that the Lord will provide.  I don't know how that will happen, and it can't be on my request, but He will.

Maybe today the blue sky will come out.  Maybe today I will get a slap in my head that says..."Julie start exercising".  Maybe today something unexpected and horrible will happen.   Unexpected and horrible, is not just a concept in Sandy Hook anymore.

Sometimes I just want to get in my car and drive to the ocean.  And sit there all day staring at the sea.  Just daydream and let life give me peace.  

That's today.   A Mother's journey.  Onward to a fragmented myriad of tasks and to do's....all of them for my children.  I am not a good climbing point on Mount Julie.  It's a slippery slope and I have no tools or security other than putting my arms out in faith while Jesus throws me a life line.

 Life can be full of adventures.  Someday we pray that we will get him walking again like he used to.

Winter for the Sandy Hook Hasselbergers...blah

March 7, 2013

It's winter.  It's gloomy.  And as I look around each day at the gloomy sky and white ground I can't help but fantasize about a warm Florida beach.

Thomas celebrated his 12th birthday on February 25, 2013...  I can't believe it.  Daniel has been doing so well.. he's healthy and strong.  Sitting tall and very alert.  Me?  I'm perpetually exhausted, sick from sinus troubles, and pushing through depression.  

Daniel has been really happy since returning to school after his surgery and illness.  He sure looks happy in this picture with the girls.  Sitting tall and handsome.

The volunteer kids who take him to gym... his crew!!!

Life in Sandy Hook is hard to describe.  We all are just going about our business, and there are constant reminders about the day we refer to as "it".  The day "it" happened.  Adults and children alike are sensitive to so many things now.  Sensitive to both acts of kindness, and things that frighten you.  Living here, and being here is surreal sometimes, because this is just Sandy Hook, CT.  And yet, it is now the place that "it" happened. Not a thing we want to be defined as.  But not to be helped.  The comfort dogs that are in the schools have been wonderful, and a treat for Daniel who is really starting to enjoy them..

Comfort dogs are a daily event at STARR since 12/14

Daniel having therapy at STARR

Friday night, last week, I brought Daniel to a fundraiser for the Josephine Gay and Dylan Hockley memorial foundation funds.  It was a movie night at the highschool.  Quite fun.  Great to see familiar faces. And yet, always still strangely isolating to have the only non ambulatory child at these things.  Daniel really enjoyed watching finding Nemo.  It was on a big screen and there were lots of kids all around.  Good snacks.

As I write this tonight, it is snowing outside. A storm called "Saturn".  What does that mean for tomorrow? I am not sure, but kind of hoping for a snow day.  

We have snow.  We have wildlife (Opossum, Turkeys, and Deer) that come up and eat the stale bread I provide to them.  I love seeing the animals.  

Happy Birthday Baby Brother Thomas... 12 years old

Trees of Care from Sandy Hook Brownie Troop

Special Trees From Special Girls

Back in December I was approached from the Mom of a Sandy Hook Brownie Troop.  It was in response to an email I had sent out in hopes of raising money for Daniel's Fund and to help support us through his Spinal Fusion surgery.

Well, as we all know here, Daniel became very ill after the surgery and we were at Yale for 34 days, until January 11th.

The girls wanted to get together as a group and create a tree of caring.  Well, they sure did, it was a tree times two!!   On Friday, February 1, we finally found a time to connect and the trees were delivered to Daniel/us.  It was more than just a nice gesture!!  The trees were intricately decorated with handmade ornaments, many made very cleverly with colorful duct tape!!  They were also covered with gift cards and money rolled up.   All things that will help us, and help us care for Daniel. The lights on the trees really cheered Daniel up.  He was fascinated, he loves Christmas lights. 

I am so grateful for the kindness of others.  My goodness, the hearts of these girls are so big.   Hopefully we will all get together soon so that they can spend some time with Daniel.



Raising and caring for a complicated and completely disabled child is pressure and stress that goes beyond description.  And when you have committed to loving and caring for that child it doesn't ever stop.  Daniel's needs go on and on.  That is why I hope to build a fund.  For his future too.   We are getting older, not too much older!  But I think about him now that he is a teenager.  Needless to say, he will be with us until whenever or whatever happens to make that impossible.   And that is going to be an extreme "burden" even though I don't consider it one. Not in that sense anyhow.  I adore this kid, he is just so amazing.

Being able to give love is a great way to learn how to love.  If that makes sense.

Today, February 5, 2013 it is snowing gently outside.  I'm sitting here in quiet peace just writing and reflecting. 

Life is a rollercoaster...  and right now, I'm just sitting and waiting for the ride to begin its ascent again.  Because it will.  It always does.

Super Bowl and how has life been?

Today is February 4, 2013

Well, the Ravens won the SuperBowl last night.  And in the above video the Sandy Hook School 3rd and 4th grade chorus sang at the Superbowl with Jennifer Hudson.  What an amazing thing to see our kids in front of the world like that singing.  They didn't look one bit nervous.  It was a tearful moment with so many mixed emotions. 

Being in Sandy Hook right now is a daily battle of keeping the smiles going.  There are stars all over the town nailed to the telephone poles and they have words on them like "dream, hope, joy, keep going, peace, love, family, care, inspire, laughter, live, give, be happy, etc etc"  And you glance at them as you drive around town for a brief second of inspiration.


Daniel went back to school full time last week, January 29th and so far he has been doing very well at school.  He did not catch the flu bug that rampaged our house... He is very healthy.  The only real concern are periods of time where he seems to suddenly be in extreme pain and we simply do not know why.  Spasms maybe?

I feel like I am in a place where the walls are squeezing me in...  trying to do all of Sarah's college stuff... is a handful. But managing Daniels needs is a full time job.

• Call the Gi
• Call the Orhtopedic
• Sleep Safe Bed is broken
• Issue with several prescriptions
• Nutrition consultation is needed
• New Bath Chair
• Repairs to ceiling lift
• Bills.
• IEP goals and concerns
• New Wheelchair consultation
• Pulmonary clinic
• Work needed on his teeth
• Eye doctor appointment
• Neurology appointment
• Did I mention bills.
• Adding up all of the medical deductions for the taxes
• Appointment to Physiatry
• Endocriniology follow up
• Needs a regular physical too

That is just part of the list I have to follow.  I feel like a lunatic because I am so stressed out.

And well...that is just life.  A GIANT GIGANTIC LIST.  Not including normal things that a family has to do. 

Life has been ok.  Thomas and John wanted the Ravens to win the Superbowl and they did.
I just enjoyed watching the whole thing in general.

But when I look at Daniel, every time, my heart floods with love.  My floods with stress, I have to take care of him, I have to provide for him, speak for him, do everything he needs.  And he just looks at me with those sweet hazel eyes.

My life as Mother is so multi faceted and fragmented that sometimes I just shut down when what I really should be doing is going faster.   But I am only human.  I have my breaking point too.

Now I have to go and force myself to go to the gym and get out of my house.  The piles of paper are like ghosts just taunting me and making me tired.

One second at a time and I pray someday things won't be so complicated here.

Home to Sandy Hook and healing

On Friday, January 11, 2013 Daniel was discharged FINALLY and we returned home.  It is suffice to say the exhaustion was incredible and I think both Daniel and I slept for  12 hour clips.  Adjustment to reality has been a long process.  I began to feel like I was engulfed in a post traumatic stress situation.  But as the days have gone by, slowly but surely I am starting to feel like myself again.

Daniel started violently vomitting on January 14.  It almost prompted a return to the hospital.  But he stopped as fast as he started.  And I hoped it was just a fluke.  His mood has been good, no fevers, so happy and cheerful.

On Saturday, January 18 it happened again. This time worse.  An all day event of violent vomitting and diarreah resulting in a near "pack it up" we are going to the ER.  But we ran him on clear pedialyte and by Sunday he seemed perfectly ok again.  It's insane.  You almost wish he would either BE clearly sick, or NOT BE clearly sick.  With Daniel its an inbetween grey area that never EVER shows a bit of consistency.  That is what makes falling into any kind of a routine basically impossible.

Somehow as I sit here at my desk this morning, I am working through these piles and piles of bills and letters and I know at the end it won't be the prettiest sight.  But Sarah's financial aid forms need to be completed on line, which means I need to do my taxes.  Now even the accountant does it all on line which makes life so much easier.

I didn't work, well, since back in November.  Thursday the 16th I worked 5 hours at the NYA just to check my mental sanity.  It was good, but sad.  I saw one of the Mom's who had lost a daugther because I made her a protein shake.  And I realized that my adjustment is no where near as hard as hers.  SO hard to fathom how to keep your spirit up enough to get to the gym, but it is really helpful to keep moving.  (I need to take my own advice.)

Today is Martin Luther King Day. Kids are home.  I have piles of piles.  I have laundry.  They are all wanting me to do something for them.  But I still need to go to my AllState office where I worked with Jon until Jon passed away the day after Christmas.  I am hoping I can still work there with Larry, to help out in any way that I can.  I've been so sad about the loss of my friend Jon that it's been hard to get to the office.  I'm supposed to be studying for my Property and Casualty license.  But after the shooting here in town, I just don't seem to have enough brain diversity to do so many things.

Plus, Daniel's life is very very time consuming and involved.  So its all alittle crazy and stressful. 

Priorities, are Daniel's recovery and Sarah's college financial aid applications and filing my taxes. Yippee.

Depression sneaks its way into my veins now and then, and I hate when it does because I start to feel like its all just a hopeless mess.   But, resilient am I.  I learn that from my Daniel.  And I will keep trying to do the best I can.   I can't work full time,  its just not humanly a reality.  So I have to keep this fragmented multi faceted role going forward into the future. 

Maybe my dream of nursing school will become a realtiy someday? I don't know.  I will keep in on my goals. 

Last night, Daniel cheered my soul with his laughter.  So much laughter.  And then he fell asleep.

Have a great day.  Thank you for your continued prayers and support for us as we do our best to raise and care for this very special kid.  He is so awesome.  

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.

PAIN-cre-a-titis Happy New Year Wahoo

December 30, 2012

It is Sunday evening, the 30th of December.  While so many people still have their holiday decorations lit up and plans with family and friends, we are just managing life between here in Sandy Hook and where Daniel is at Yale in New Haven.

This morning he was wretching pretty badly again.  And after just having learned that his pancreas enzyme numbers were trending back upwarrd, it was honestly pretty heart wrenching.  Daniel has been in that room since Monday afternoon December 17, 2012.   And after 2 weeks, his illness still has not resolved.

In the meantime, John has had to go back to work.  And Sarah and Thomas have lives that must carry on.  As I sit day to day in the hospital the days all blend into one, while at home people are helping shuttle my kids around and meals are being delivered.

I recently just learned that a friend of mine, who hired me to work in his AllState office in Monroe, CT passed away suddenly from a heart attack on December 26.  Leaving his two little girls behind.  So sad.

It's a world of hurt out there.  And I don't know about alot of other people, but I still can't seem to lift the fog off of my brain.  It just hasnt been  holly jolly time at all.

This morning at the hospital I met a family whose little baby was born with a severely deformed face. The little tyke had these adorable cheeks, blue eyes and red hair.  So many surgeries, and the results were amazing.  So sweet that baby.

I can't even wrap my head around all of the emotions that I am having as a mother right now.  Especially a mother here in this town where we are raising our kids.  But like I said I feel like its a fog.  A fog I can't get out of.  And I have no time to try because my energy is spent on trying to find out how to get Daniel better.

A random act of kindness came upon me yesterday.  As I sat in my room, watching the snow heavily fall outside, I knew not a soul would be coming to visit us.  Suddenly a bag with a shiny balloon was delivered from the giftshop. In that bag were magazines, cookies, fuzzy slippers, a GET WELL Teddy bear, crossword puzzles, etc.   A wonderful friend, who knows how it feels to spend extended stays in the hospital had it sent to Daniels room.   I am so touched...  I just want to do the same for someone else.

I had wanted to do the same for you my friend Jon Haydostian, but Heaven had other plans for you.  Rest in Peace.

I'm sad and disorganized in my thoughts tonight.  Probably the Sandy Hook syndrome.  I just feel like the sun needs to come out and dry up all the pain.

This hospital stay is a killer on my family.  In everyway possible...but I am home for my two nights of resting and sleeping before heading back to the hospital again. 

So with that said, as I lay here resting without the sounds of beeps and pumps and nurses coming in and out, I will lay my head to rest. 

 

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