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.....

How Many Days Until Christmas???

Oh please.  I am not in the mood to see the holiday lights up.  If I see one more Christmas commercial on TV I am going to scream.  Its been a rocky road this year making it to December...and the last pressure I need is the societal pressure to spend spend spend...   I look at Daniel...and he can't request a single darn thing. He can't write a list for Santa Clause.  He really just loves the lights on the tree...the cheerfulness of the colors.  Its quite simple really...  he feels the cold air, smells the pine, watches the lights, and still asks for nothing but to be himself.    I wonder why our world has become so ridiculously consumed with spending so money on piles of gifts...  as a kid...  for me anyhow, it wasnt like that.  We lived in an apartment, had an artificial tree, and what we got for gifts...was simple...what my parents could afford.  Now the mall is a panick attack place for me.  And I am trying to avoid the push push push.   I have no fancy parties to go to.  Maybe some cookie exchanges or Angel swaps...  but as cliche as it sounds...  the holiday is about our savior.  Not the destruction of our financial stability.   Really... do people actually buy eachother mercedes benz cars for Christmas???    Really?

I have mountains of work to do for Daniel this week.  Mountains. A visit to the pulmonary group as a follow up after his pneumonia. Therapy...so much driving...  his lift needs a repair now that we got the crazy engine noise fixed.  Battles with insurance over all of his stomach meds.  So much.  So I wish the holiday demons would just go away...  its silly that they push selling cars, then they push getting a capital one credit card, then push buying every toy and appliance out there.

How about some nice warm socks.  Thats not to say a camera, IPAD, new laptop, or flat screen TV would not be nice...  but isnt this kind of a recession??

I have a medically fragile child..and all of those things mean nothing to him...in terms of his own personal want.

We could all learn a lesson from that.   I just pray that I find my holiday cheer this year.  Right now I don't even feel like decorating.  And that is NOT me at all.   I'm more concerned that the pneumonia could come back and when the surgery will happen on his spine...   Thats my reality.  Stupid TV commercials.

Kids who have received Dream Come True CT wishes...we had our dolphin swim and disney trip in 2010... this is the annual breakfast with Santa.  This years is coming up this weekend on December 4...I can't wait.  Its a blessing to meet these VERY special families...

I guess I should start reading more.     Signing off...cheerfully...  Julie

Storm Alfred Booing, and a WTF reaction

So this storm came on October 29th and dumped a ton of heavy snow on our Fall trees, mostly full of colorful leaves still.  All night long we heard crack, snap, and little by little power went out all over town.  Aerial view was probably creepy if you were looking down!


We also got "boo'd" early in the evening...  and it was a bag of goodies...with generous financial donations for Daniel's fund.  About $700 towards our goal!!  It was an amazing gesture.  


Then more snow.  more more more....  The next day was October 30.  And 99% of our town was in the dark. Trees were down everywhere the eye could see.  Miraculously, like in Hurricane Irene... we were the small percentage who still had power.  All we lost was our Cable TV.    I decided that an Angel was sent to protect Daniel since we don't have a generator, and he needs power to eat, have breathing treatments, etc.  


Today is ...November 3.  The kids had no school this entire week.  Much of the town...and state ....still in the dark.   


Sarah told me she feels like we are in an alternate universe. I have to agree.  All that is normal was turned upside down.    How do you cancel Halloween???   


New England got hit hard...again.  Its been a very hard Fall...  my yard looks like "tree limb carnage"


But what can you do except continue on.   I need to keep working on raising funds for Daniel, and looking for a way to get to nursing school.  I have started believing that I need to take care of JULIE.   Storm Alfred woke me up.  Big Time.   Through prayer and a spirit of resilience I am going to make it through my own personal storm here.    I have so many people helping me.  Loving us.  And I love them in return.   Raising Daniel is a giant task.  Raising Daniel in hurricanes and Nor Easters... lol...  alittle more challenging.   

Our Surprise Boo gifts from some very caring Newtown People!!!

Saturday's ride home from our last Football game

Tree limbs snapped off everywhere

This was my Japanese Maple tree...completely bent over

Snow was so heavy you couldnt use a snow blower

Several of these branches eventually gave way and broke

Not a swamp creature!!!  It is what is left of a giant very full willow

All the trees just in an arc shape.  They looked so sad...

Snow before Halloween.

Very symbolic of the strangeness... this giant pumpkin snowman made me stop my car and take a picture!!!

Roads completely blocked off

He (Daniel) never seems to stop smiling.       God bless you all.