I fell in love and got to visit that place June to July 6 2013

July 9, 2013  A love story continues

In a moment that consisted of 12 days, we escaped the North and retreated to a place so far South that nothing is the same.  The air is different, the plants are different, the water is different, the roads are different, and the people are different.   No we do not spend any money on a luxury deluxe vacation, but rather we have a family member with a generous heart who opens her Florida home to us.  And this is the most awesome thing I have experienced.

 I fell in love with Florida many years ago. Probably the first time I submerged myself into the 85 degree still waters of the Southwest Gulf coast.  Or the first incredible sunset that spilled its glory across the water and slowly dissipated leaving hues of pink and orange and purple until it finally brought the darkness.  The sound of the cicadas, the crackle whisper of the Palm Trees.  So many different types of Palms.

Hitting the water for the first time since his Spinal Fusion

When I take Daniel out into the world, to the stores, beaches, pools, movies...everything is easier.  People are kinder.  It is ramp and elevator heaven!  And its certainly clear to me why people choose to retire there.  Life feels gentler.  Protected.  Structures left vacant for the summer securely protected with Hurricane shutters.  Homes elevated off the ground.  And not a wooden structure to be seen.  People know that the storms could come.  And yet, they take the risk and protect themselves in order to have the lifestyle that is conducive to healthy living.

We flew Daniel down to Naples, FL on June 25 (compliments of a generous gift) on JetBlue.  I had planned meticulously what the travel would entail and have bags and supplies packed and ready.  I had shipped down cases of diapers and made sure I had all of his medications because in Florida they don't take Connecticut state insurance.   We got to the airport, and Daniel, as usual boards first.  We always sit in row 1 E, and 1 F (Daniel and I) and the others sit back in the regular seats.  Daniel no longer "slumps to his left".  When we put him in, buckled him up, he was straight and tall.  My teenage pal.  He is tall enough to see right out the window, and focused enough to realize he has a TV right in front of him.  He is very aware and physically reactive to the sensations of the plane.  The sound of the engine, the air from the vent, the whirring of the engines as we climb into higher altitudes.  He holds my hand, or my arm.  And he never stops touching me the entire flight.

We leave the dusty, loud, stressful, high traffic, chaos of New York and land in Fort Meyers.  Southwest international airport.  As we emerge from the plane, gentle music is playing.  Bright light shines through clean windows upon clean floors.  Giant whimsical Dragon Flies adorn the walls and there are brightly colored gift shops with beachy themes.

Daniel's face explodes into a giant smile...  because its kind of like the Mall I guess.  But he knows we are not where we started.

And then we go outside.  Hot tropical air floods our lungs and we see giant Palm trees and flowers.  It takes but a few minutes to gather the luggage, the rental van...and we drive out down route 75 towards a new experience of sights, sounds and feelings.

Within two days of being at the BeachWalk Condo, Daniel's congestion has completely disappeared and I don't have to use the Nebulizer.  My skin is already browning.  We are relaxed.

Watching the look on Daniels face, the first day...as we put him into the pool for the first time since his major spinal fusion surgery, is just an awesome experience.    And in the video I hear myself saying....  "THIS IS WHY WE DO IT ALL"

There is something magical on those white powder beaches that just calms me to a place where I can let it all go away....  and just take a Noodle, and float in the water watching the dolphins playfully swim up and down the beach.

Daniel is very much a welcome guest everywhere we go.  He fits in, and he is certainly very endearing.   If he is relaxed, I am relaxed.  And everything just fills in around us.  Warm water, white sand, blue sky, palm trees, .....    Could I someday find the financial means to move him South?  To give him a climate where there is no prison called snow?    I think so.   I believe God has a plan.  My grateful heart misses the South every time I have to come back to Sandy Hook, CT.  But this too is my home.

I am, however, in love with a place where health and quality of life, positive smiles and peaceful hearts shines from every bronze skinned smiling person who stops to chat with me.   Good times.

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.

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

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?

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.....