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..