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.

Tragedy and Horror in Sandy Hook

December 16, 2012

I'm not sure quite what to write today.  I'm suffering from a broken heart and my soul aches because 20 children and 6 adults were gunned down in cold blood in our sweet little Sandy Hook School.

Here's part of my story, as I know I have been trying to blog Daniel's journey to recovery. 
Daniel came home from the hospital on Monday, December 10.  It was great to  have him home but I tell you it has not been easy.  His pain and discomfort have been almost hard to manage.  He has had a fever now since Tuesday.  Anyhow, somehow through sheer exhaustion I got through the week of sleepless nights to Friday morning December 14, 2012.  Daniel was scheduled to go by ambulance to Yale New Haven Hospital to have the stitches from his spinal fusion removed.  Those stitches run from the base of his neck all the way down to the top of his butt.

I had nurse Marques here early Friday morning, and after Thomas and Sarah went off to school I told Marques that Amy was coming to do therapy at 10:30 and that I would go and get alittle bit of sleep.

I hadn't been sleeping long when my phone started ringing, texting, and emailing all at the same time. The house phone was ringing.  My text message was from Sarah..  MOM WAKE UP  MOM WAKE UP  TURN ON THE TV  MOM

Then I heard the reverse 911 call.  I ran downstairs to find Marques and Amy glued to the TV with looks of shock on their faces.  And the three of us watched, as it all unfolded, the responders at the site, the parents getting their kids, the announcement that 26 people died in the school.  Shocked, sick, and crying I pulled myself together and got Daniel on the ambulance.

We went to New Haven, and since Daniel had fever and congestion they ran a series of tests, (results still pending) so our appointment was longer than anticipated.  The two ambulance drivers, also parents of young children, Marques and myself were all glued like zombies to our iphones, announcing new news as it came out.

By the time we got back to Sandy Hook in the ambulance it was dark.  And the world knew of this horrible demonic act of violence.  An sense of being eery, nervous, frightened and sad all at the same time.  The shooter lived on Yogananda Street which is just two streets up from us.   But also near us are the homes of at least 4 of the children killed.    We didn't know the names of the families until Saturday, but we knew anyway.  Each home had a state trooper parked in front.  And that was the heartwrenching reality check...  "oh my God no, Oh my God no" I kept saying it over and over and over to myself.

It was even difficult for me to concentrate on my Daniel who was, still is, suffering.. and we don't understand why.  My sleepless nights continued.

And for today, Sunday December 16 I think you all know the story.  Its been on the news non stop.  Our little town is PACKED with press, and gawkers, and who knows who else.  And tonight, the president is going to be speaking at a meeting for the families of Sandy Hook School children.

I'm blessed to have Dave (nurse) here this weekend because my sleep deprived brain, and traumatized heart and taking away my ability to focus.   And then... suddenly, out of the blue Daniel starts vomitting, and coughing, and crying.  And its like a slap on my face.

My weak special needs child needs me to be with him.  Its really alot to bear.  I keep wishing and wanting to go out, to be with people, to light a candle, to pray, to go to church, but I am here because Daniel needs me always nearby.  So I sit alone, and I'm not an alone person.   Hug my children.  And watch tv.

So if you watch TV, you have seen lots of images of our town.  And in that town on Bennetts Bridge Road is a house with a state trooper in the driveway.   And our house, with a boy pale and weak recovering from a massive back surgery.

And I don't know what else to write.  It's simply incredible and horrific. 

Please... please pray for us.

Weekend thoughts on Daniels recovery

It's Saturday, I think and I'm seriously losing track of the days.  Daniel is hanging tough.  Breathing treatments, physical therapy, medicine, feeds, diapers, x rays, repeat. 

I just took him for a morning stroll around the floor here in the reclined wheel chair but he is very uncomfortable when we move.  So he is in his chair sleeping and has to get up to 80 degrees today.  Very necessary, but painful.

Everyone has been awesome. I did get manic and "mother angry" last night because I found him sitting in an explosion of poop, but we cleaned it up and actually its a YAY for the boy's bodily functions.  One step closer to normality.

So I think today is December 8, 2012.  You really do lose grip on reality and the outside world when you are in the hospital.  

Today Nana and Grandpa should be coming to visit, which will be excellent for me because I know Daniel will like that and I am hoping that they bring me food.  I don't feel comfortable leaving him to get food like I did when Dan was in the ICU.

Based on the current state of things, being on track as predicted, Monday may be discharge day.  But then the hard part really begins because the recovery shifts into my hands.  A hospital bed will  be delivered to our house.  I think its going to have to go into our dining room.  And I will basically live downstairs with Daniel as long as I have to.   His bed in his room, is a great bed but it only elevates head and feet...we need one that lifts him up and down. 

Maybe I'll hang some Christmas lights on it.

Children like Daniel are incredibly special, and innocent, and gentle.  It is mentally rough to have to put them into a situation like this which means great great pain and spasms.  He doesn't understand, and his smile has completely disappeared.  I miss his smile and giggles.

*************************************************************************

Sunday Morning, December 9, 2012

I woke up to the Orthopedic residents visiting to check on Daniel.  From what I understand a fever is not a fever if it is 100.6 or 101.00 or less, I guess.  Although Daniel was feeling pretty hot to me.  They don't worry about it.  I just wonder about what his body is feeling.  It's hard to be Mom in the hospital with a concern that simply doesn't concern the doctors.  I do know they have more experience with surgerical patients, but I have more experience with my Daniel.

Its quiet, its grey outside.  I am wondering when they are going to take his x rays that are needed before he can go home.  We also have to rent a hospital bed for home, so that we can easily take care of him. I told John to stay home today, and save on expenses but maybe I'm going to change my mind later when I'm hungry for food and company. 

I am enjoying the solitude as Daniel sleeps, as I know that home will mean busy busy busy.  Christmas is coming, and thankfully/hopefully we will not spend Christmas in the hospital again.  But in a sense we are bringing the hospital home for Christmas!! 

Scoliosis,  who knew.  10 years ago his spine was perfect and straight and his hips were in need of surgery.  Never even thought we would ever have to do this.  But time just went by so fast.

Being in the hospital with him, I've met many people.  All of them kind and caring.  We are not alone in the universe with our problem, there are very sick people around us, kids who have been injured, kids who have had surgery, kids with cancer, kids with RSV in restricted contact rooms.  I sometimes try to envision the rooms of the entire hospital and imagine I am a bird quietly flying over all of them scanning them and praying as I go.   I believe love and prayer can spread like an epidemic if we open our hearts.

Its not an isolated incident, what we experience, everything is connected in some fashion.  We are not alone in the universe, we are connected as brothers and sisters.  Some people sadly shut off to others, and yet sometimes a magic connection happens that warms your heart.  Sometimes in the most unexpected of ways.

Its been a crazy week.  Its been a very interesting and long week.  I am ready to go home.  Home is where love lives and healing will complete itself.  Daniel is a catalyst that holds together the selfishness of want and the unconditional feelings of gratefullness and pure love. 

There are so many people I want to thank, and so many people that have extended response to my asking for help.  I don't feel uncomfortable about going out on the limb of life to ask for help.  Because I know I am a child of God and that I am only as good as my faith in Him.  And I know I can not do this alone.  We are not alone in the universe.

From 12 noon until 2pm the unit we are in, 7-2, shuts down the lights and has quiet restful time.  It is as if peace just settled over the hospital.  Calm and quiet.   Praying time.  Sleeping time.  Thinking time.  And in my case, writing time.

BEFORE

AFTER

Scoliosis (from Ancient Greek: σκολίωσις skoliosis "obliquity, bending")[1] is a medical condition in which a person's spine is curved from side to side. Although it is a complex three-dimensional deformity, on an X-ray, viewed from the rear, the spine of an individual with scoliosis may look more like an "S" or a "C", rather than a straight line. Scoliosis is typically classified as either congenital (caused by vertebral anomalies present at birth), idiopathic (cause unknown, subclassified as infantile, juvenile, adolescent, or adult, according to when onset occurred), or neuromuscular (having developed as a secondary symptom of another condition, such as spina bifida, cerebral palsy, spinal muscular atrophy, or physical trauma).

 

 

 

Spinal Fusion Journey to Recovery Days 5 and 6

Friday, December 7, 2012

Here I sit, in another room, in the quiet.  Well, there are some annoying beeps and buzzes coming from somewhere. Typically once you get to the floor after the ICU there is a culture shock adjustment. The level of care is good, but the attention you get is much different.  And that is good, because rest is needed.

Yesterday, I was beyond exhausted and decided to head home to see Sarah and Thomas and get some much needed sleep.  A friend brought by a fabulous hot cooked dinner just as I pulled into the driveway after picking up the kids.  We ate dinner, and all three of us were sleeping by 9:00pm.

Then the coughing started.  From Sarah.  By morning she had been coughing in her sleep most of the night, keeping me awake.  So much for much needed sleep, home was just like hospital.  She had a fever in the morning and I kept her home.  Waited for Thomas to get home and then headed back here to Yale to switcheroo with Daddy.

Daniel had a rough first night on the Pediatric Floor, his respiratory situation went south and his oxygen levels were going into the mid to low 80's (this is bad).  But the respiratory people came in and suctioned him like crazy (this is good) and he began to breath better.

His eyes were itching him like mad, and John didn't know why or how to help him.  They gave him benedryl (which he isnt supposed to have due to how it affects seizures) But he slept well once it kicked in.

I got here today with Thomas who was anxious to see his brother finally.  Took one look at Daniel's eye and told the nurse to get the doctor in here because its pink eye.  I was right, they ordered the antibiotic drops.  Dr. Mom strikes again.

Pain is still an issue, as it will be for a long time.  Daniel will be in his wheel chair again tonight (the reclined one) and its good for him to be up in the chair.  His pain meds are all via the g tube now, and he has restarted his g tube feeds today.

It's Friday, and over the weekend they will watch him, take more x rays, and make a decision about discharge possibly Monday or Tuesday. 

This boy is a super Trooper.  I can tell you that.  I know he is probably wondering what the hell did they do to my back!!!   But, God willing, it all turns out for the best.

I really wish someone in this hospital would silence that alarm before my head explodes.

So its day 6.  Its been a long scary, exhausting, emotional week.  And now we are facing the rehab part at home, which will be somewhat daunting as well due to the fact that transfer requires two people VERY CAREFULLY lifting him so as not to pull at the hardware in his spine and anchored to his pelvis.

I never should have had a large coffee so late.  I'm jittery.  Just waiting for our nurse, Hope (nice name) to come in and help me get him into the reclining wheel chair.  I can't do it by myself.

I'm still wondering how many inches the surgery made him grow. I'm guess about 3 or 4.  It's wild.

Mom and Tom arrive at the hospital to relieve a very tired Daddy

Journey to Recovery a Spinal Fusion story.. Day 3

Wednesday, December 4, 2012.  Daniel had a better day today than yesterday.  Still in pain, and having spasms but pain management came and made sure he had a great regimen of pain medicines.

It was par for the course in the PICU pretty much.  The entourage of nurses, residents, attendings, janitors, respiratory people, physical therapy, patient life, care coordinators etc etc etc.

I'm pretty exhausted at this moment of writing.  I was thrilled when Marques came again, with his wife to see Daniel.  Daniel was pretty agitated but he had his eyes open and was playing with the Balloon I bought him.  As promised, when he opened his eyes for me.

It was a rough night of agitation and pain, mixed with deep periods of sleep.  Breathing is going well, respiratory system is miraculously adjusting. 

Spinal Fusion Journey to recovery Day 2 December 4, 2012

After Daniel had his surgery yesterday, a long long 10 hours. We finally got to see him in the ICU at 6:30PM.  He was intubated, and since he had lost 9 pints of blood they were still giving him blood.  He was very sedated most of the night and I was able to sleep for a little while.

Daniel woke up last night, to some degree, very very agitated and uncomfortable so they gave him some sedating medication.

So much equipment in one small room for my one guy. 

Tuesday Morning, December 4, 2012.  Daniel slept until about 6am when the orthopedic residents came in like a whirlwind turning on the bright lights wanting to look at the incision and talk to me.  In a sleepy stupor I talked to them but can't even remember what I said.  After that, someone else came in, then someone else, then I listened in as the 15 people stood in a circle with their rolling computers doing rounds.

At 10:00am they extubated Daniel.  When the breathing tube came out, he started to develop more and more upper airway secretions and his oxygen saturation began dropping down into the 80's.  The put oxygen on him via a canula and that seemed to help.  He was showing signs of pain and discomfort.  The nurse was trying to reach the pain team.   Respiratory treatments were started and finally around 1 or 2 the pain medication arrived. 

Lunch in cafeteria...  another $20.00 bill.  Sheesh.   Physical therapy came in and started showing us how to transfer Daniel.  He was put into a reclining wheelchair for an hour...although he still had not opened up his eyes.

Once put back into his bed, he was very very upset and uncomfortable...  He had a visitor, Marques our nurse...who had also stopped by to see us yesterday while we waited during surgery.

I'm sitting in the dark in my son's ICU room feeling like things are surreal...but also feeling like so many people are sending love and prayers...  you can feel it...  I have two prayer shawls that have been my constant companions.

Daniel is now asleep, it is 8:15pm..  Our nurse today, Juliana, was a doll... such a nice girl.  She made my day brighter with her smiles.  I wonder if nurses realize how much they really do affect patients and their families.

So now I sit and wait and wonder.  Will I sleep?  Will I be woken repeatedly through the night as Daniel needs pain medications.

Just so you know, a Spinal fusion results in an incision from the neck to the butt.  The spasms are incredible..  and the fact that my son is lying here after such an intense surgery blows my mind to pieces.

Well. I have my prayer shawls, my laptop, a book, some tic tacs, and at least one guardian angel in here with us I hope and pray.  The journey continues...where will we stop tomorrow?

Spinal Fusion Journey, Day ONE...December 3, 2012

Arriving at 6:30am

4:34am.  Woke up. Took a shower, got Daniel ready...  and we left at 5:30am

Arrived at Yale New Haven Childrens Hospital, New Haven CT at 6:30am and he went into surgery at 7:30am.

From 7:30am until 5:30pm they operated on him.   And we waited.  And waited.  And dozed.  And waited some more.

 And now we are currently waiting, for the doctor to come and give us an update.  He will be moved to the PICU and will stay intubated after this.



Pre Op Moments

Pre Op moments



Pre Op Moments

 I will update more later.

I'm dreaming of a white Christmas...and Spinal Fusion

November 27, 2012

There are snowflakes falling at 7:55am.  I must say its quite peaceful here.  Everyone is at school and work...and I'm home alone resting.  Because, I have a kidney infection that is excruciating. The pain started yesterday and I went right to the doctor due to the fact that my health is of great value around here and there is no time for sickness.  A typical UTI turned bad due to a badly diagnosed antibiotic.  Hopefully this heals up now...but I'm miserable.  Have so much to do...  but perhaps its a way for God to tell me...slow down Julie. Slow down and be calm. Look at the snow. Pray.  Focus. Blog. 

Thanksgiving/Daniel's birthday was November 22, and it was a very nice day. We had a quiet holiday, and I bought Daniel 15 Balloons to celebrate.  It was very colorful for him.  Then on the 24th 30 ish teenagers came over to celebrate Sarah's 17th birthday.  We turned the basement into a winter wonderland...it looked pretty and she had a great time.  I've always wished that I could rent out a hall for her to have a real party with a DJ and all of the special things that so many other kids have around here.  But I hope she knows that we do the very best that we can.

Last week...  Oh man.  The nurses and I spent two full days taking Daniel to pre-op appointments. Pulmonary, bo-tox for saliva, x rays, blood work, Surgeon consultation, anesthesia, physical therapy, etc etc.

Everything is looking pretty optimistic, but we have one more test tomorrow on his heart.  The curve of his spine has progressively worsened.  This totally needs to be done.

This is Daniel's Spinal x ray. The curve of the spine is over 90 degrees

There is a long list of things to be done before this surgery....  and I'm working on it. John is planning the care of the kids schedule at home.  I am working with the doctors on the post op recovery planning.  Where in the heck am I going to put a hospital bed? Looks like it will be next to my Christmas tree this year....   Special wheelchairs, nursing visits, nursing care, medicine, pain relief, physical therapy, a new wheelchair...  etc. etc. etc. etc.

Due to the crazy kidney infection I am losing this entire week of work.  And I wonder just how I can possibly pull off Christmas.  It will be small.  Small and quiet I am sure.

So today is Tuesday, and there are 6 days until surgery.  Tuesday... and I need to rest and recover.  And focus on those words that fly at me repeatedly, "Julie you have to take better care of yourself"

Duh.  You all don't think I know that?  Perhaps if other things around here shifted onto the shoulders of the people who are free to come and go when they please, then I could focus on my health.  Right now, I am 100% Daniel, Sarah, Thomas, house, cars, finances, and bills....  Phone calls to make, appointments to schedule, folllow ups, equipment, medicine, laundry, the animals, ....  and when someone's brain is so over taxed its a challenge to go to the gym.  I could just let things go, but then while I'm "taking care of myself" I will just obsess about the things that are not being done.

So for now...  as it snows and looks Christmasy and peaceful. I will pray for God's help.  For faith and complete restoration of mind and of body here.  Pray that somehow financial needs will be met over this month of December and that all will fall in line.  Pray that Daniel will remain healthy. Pray for people who are angry to find peace and forgiveness.  Pray for kindness and charity and love to spread like an epidemic everywhere.    There. I feel better.

Wondering, will there possibly be an early dismissal from school today....hmmmm  and I need to  call and schedule Sarah's audition for MaryMount Manhattan college..... and.... and.... and.....

Monday. What...no BIG STORM THIS WEEK???

Today is November 12, 2012.  Monday.  About 16 days until Daniel goes in for his surgery on his spine.  I feel like the world is kind of closing in on me. Between Sarah's college applications, my schedule of MOM things...

Today Daniel's bed is being repaired, later his lift system. Routine wear and tear, the boy is getting older, and taller.

It was a blessing yesterday to bring Daniel back to church, and for me to have time to worship.  I had not been in so long...  months and months.  I felt revived and connected to Jesus when I left, and I'm trying very hard to maintain my faith and positive feelings.

At least there is no SNOW or bad weather predicted.  We can accept that.

Parties to plan... Daniel is 15 on November 22, and Sarah is 17 on November 20....

MY creative side is napping right now so I am going to end this post.  My MOM "things to get done" side is taking over because I have things to do, places to go....    as always.

We were still cleaning up from Hurricane Sandy this weekend....  I think finally everyone is back to normal, even with another nor easter that hit last Wednesday, gave us snow...but the snow melted fast.  We won't forget this Superstorm...   and I have to keep reminding myself that our home really really needs a generator.

Daniel loves balloons when the Cable goes out.....

During Sandy, we first lost our Cable, internet and phone.  Boredom settled in, but Daniel was calm and peaceful.  Happy as a clam just watching this balloon...  He amazes me, how his world is so different from everybody elses..

Hurricane Sandy beat the crap out of New England

 Well, today is November 3, 2012 and things are starting to look normal again around here, at least.  The storm hit hard on Monday night, October 29 and we lost our power somewhere around 8:40PM.  For the rest of the night we just sat in the dark listening to the wind, the snapping of trees and branches, and watching emergency vehicles rush up and down our road.

Newtown CT ended up 100% out of power with over 60 roads impassable I beleive.  But the coast line of New Jersey, CT, and all of lower Manhattan, Long Island, Staten Island, etc are devastated.  It was a crazy storm, a mix of a nor easter and a hurricane slamming right into New Jersey directly.



Daniel having his breathing treatment and Vest at the Newtown Youth Academy



We were out of power for three full days, which was not too bad...although I did lose all of our food in the fridge..  We survived by taking showers and using power sources at local facilities.  The kids missed one full week of school, and Halloween...was cancelled due to safety concerns.

Thank GOD, Daniel was healthy, and not having respiratory problems or seizures..  because that would have definitely complicated matters.

As I write this, on Sunday at 11:32am John, his brother, and Thomas are working hard to clean up the incredible mess of branches and leaves that had become our yard.  A big big mess.  We lost one big pine tree, but had no damage to the house.



I've got a priority now, that is, to get a generator, but have to figure out what will best suit Daniel's needs and our needs when this happens again.

But we are doing ok.  In ONE MONTH from today, Daniel will be having his spinal fusion surgery, and that has my anxiety level soaring through the roof.  I have so many things to do this month.

But for now..  I'm grateful for warmth, water, light, and internet access.  Praying for the people who have lost everything... 

Peace.  Have a great day.



The Hasselberger children wearing the latest fashion in head light wear!

Sitting around the woodstove keeping warm and playing cards

Sound asleep like a baby, storm? what storm?

Finally made use of the flashlight collection

Halloween Candle

Daniel chilling out in his bed.

Happy Birthday to Daddy... on November 1

Mom..why aren't you turning on my TV????

The lantern that helped me do his medicines at night..

Frankenstorm eats Halloween and my Dad's birthday cake

Today is October 29, 2012 and we are all sitting here , in our house, awaiting what is to arrive. This storm they are calling Frankenstorm.  A giant mess of Hurricane Sandy and a Nor easter combined.  Fearful that we will lose our power, but we are really at the mercy of the weather today.

If the power goes out, I have 24 hours until Daniel's feeding pump runs out. Then I'll have to figure something out.

Its going to be alot worse in places other than Sandy Hook, CT. But all I know is this, school is cancelled for two days, and even John's job has closed.

Its 10:44AM and so far nothing but alittle rain, and gusts of wind...making a big mess out there with so many leaves.

Sigh.  I am needed by Daniel.   Will be taking pictures if anything interesting happens.  Peace.

Oh yes,  It is assumed and presumed that this will be the second year without a Halloween due to a mess caused by a freaky storm.   Fascinating weather.

GRATITUDE and Choosing to be strong

October 19, 2012

Here I sit, staring out the window at pouring rain and Fall leaves and nothing but the sound of my computer and the wind.  The kids are all at school. John is at work.  Even the cats are sleeping.  Its pretty much my favorite time of the day.  Should I be exercising right now? Probably.  But my heart and mind are both feeling heavy today and I felt like writing.

I am working on thank you letters  for so many people, for so many reasons.  I have a pile of notes, prayers, cards, gifts, emails, and more that I receive almost on a continual basis. Why?  Well, because I choose to reach out and share my story.  I choose to stay as strong as I can during this very difficult journey that goes down a long endless winding road.  And the road never seems to have an end, or any direction, its just a continuous process of pain and recovery, pain and recovery, pain and recovery.   There are some amazing people that surround me and yet I get sad and feel so lonely, so often.  Then I take out those cards, notes, prayers, letters, etc. and I know that I am not alone.  Piles of them, like.....

"We were moved by your email Julie, we will pray for Daniel and his upcoming surgery. It's hard to imagine what you have through and how strong your family must be.  I wish we knew of more resources that can help you.  Best of luck and keep on fighting for him.  Sincerely... XXXXX"

"Dear Julie, We wish Daniel the best. Kudos to you for being brave enough to reach out! We will be praying for Daniel's health. God Bless Daniel and his entire family."

"Dear Neighbor, My wife and I heard of your struggles through a friend.  Our hearts go out to you and Daniel, and all of you.  We live here in Newtown, but not near you - but we are neighbors because we believe in the healing and comforting power of faith.  Please accept these gifts, (a beautiful CD of hymns, and some money) and know that there are people all around you who care.  God Bless.  Anonymous"

"Dear Julie, I read your email and found it hard not to want to help you and Daniel out.  I believe in the nature of good people. I hope that if I ever find myself in a hard situation that I would find comfort in my community as well!!  Best wishes and thoughts" XXXX

"My name is XXXXX, I am a Newtown resident, and firefighter, as well as Dad to XXXX, who was a STARR volunteer last year.  I recently learned of Daniel's fight, and your family's struggles, and wanted to help as best I could.  I talked to XXXX about Daniel, and she glowed when she told me.  "That with all this boy has to deal with, he always has a big SMILE" he has impacted XXXX in ways he and you will never know.  He has taught my daughter life lessons she never could have learned at age 12, had she not met Daniel, be proud of that, in his way he is touching and changing lives.  I can't even imagine what you deal with, but I am inspired by your commitment, love, and appreciation for Daniel.   Please accept my gift in the spirit of appreciation for the lessons taught to  my daughter by Daniel, and the lessons taught to me by your family's strength and courage.   A friend of mine went on a mission to Lourdes France and brought me back water believed to be have been responsible for miracles in the past when bathed in.  I would like Daniel to have this, and pray that it helps lead to a miracle for him.  With all my heartfelt compassion and prayers..XXXX"

Call me crazy, but these are valuable and wonderful notes.  Most people reach out in ways that are not financial, which is more valuable to me.   But I am simply blessed to be in receipt of love and acceptance of my son.   I choose to be strong.  To keep my head up high.  To work through all of these challenges and do the absolute best job I can to provide a good quality of life for my children...all of my children.

If you are reading this, and you are one of the people that has connected with me, and shared compassion with me.  You have NO IDEA how much that means to me.  On the journey down the endless endless road, friendly faces and kind words are like water to a marathon runner.

Other parents of disabled and medically fragile children (I know many) all share the common need for people to understand and accept their child and their situation. 

Choose to be strong.  Choose to pursue happiness at every cost.  Be resilient and love your neighbors.  No one knows when something tragic, difficult, painful is going to happen to them.  But people, people are what help you survive.

I say thank you.  choose to be strong because of you, and because of my faith.   The road is about to become very dark and scary over the next few months.  I believe now, more than yesterday,  that I will make it.

Enjoying Sunshine at an October football game

Julie Hasselberger

What's so Funny? Or can't you help it??

Random laughing episodes.

Trying to decide why Daniel is having repeated episodes of non stop laughing.  They could be Gelastic seizures and instead of discussing it...  I'll show you via this video..

Some things that I deal with are pretty clear cut.  But if a new type of seizure emerges, and disguises itself as joy and laughter, then how would we know.  Well, he could be sound asleep and then he wakes up laughing and thrashing.  He does this to the point where he wheezes and gets all sweaty.

This week I have been very sick, so I've spent some time in bed watching video footage of Daniel.

Warning there is one disturbing video of Daniel getting upset before he has to get on the bus.

I have sent video footage to Dr. Francine Testa, at Yale New Haven Hospital, our Neurologist...and she is going to review it and let me know what she thinks.

Until then, I'll keep watching him very closely...  .

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