Friday, December 20, 2013

Disillusionment

I am not having a day full of joy. I want that, but sometimes even the happiest of days can turn sour in a heart beat.  I wasn't supposed to be alone at the mall today.  I was supposed to be having a joyful day with my husband.  But.  Bing bang boom. Yadda yadda. I'm alone. 

I would like to ask you dear Santa to put a good word in for us. Lol.  My heart is happily waiting for my daughter to meet me here at this mall. Where I am feeling sad and in need of a hug. 

This is a hard time of year.  And the best time of year.  I wish I could buy stuff here.  But instead I am just dizzy and hungrily and needing someone to rescue my heart.  And here comes Sarah. God is good. 

Monday, December 16, 2013

My little Sandy Hook at night (+playlist)

Friday, December 13, 2013

The Daniel Factor

The mystery of Daniel carries on. Bloodwork is all normal (YAY) but he was crying out in pain today several times, really crying, as if he was hurting very badly. So Jan 2 he has an appointment to see the orthopedic because his P T at school thinks maybe its his hip? He's a decent hypothesis. I can't tell you how much I hate when he cries like that, I get so upset and agitated.

The Daniel Factor, that is what we call it.  The random unexpected unexplainable rapid changes in Daniel's physical state, or emotional state.  The Daniel Factor.

Its December 13, 2013 and I as m freezing cold, its late, and Daniel just fell asleep.  When he falls asleep, then I fall asleep.  Or I try to.  Most nights I have to take a Klonopin to be able to knock off into a doze.  It's a sad state of affairs really.

Yes, the Daniel Factor. What will tomorrow hold.  We shall wait and see.  In the meantime, lets have have winter storm named Electra and freeze our butts off.  Snow.  I am not thrilled. Brrrrrrrrr.

Thursday, December 12, 2013

On living in Sandy Hook, a reflection of thought

On living in Sandy Hook, a reflection of thought

It's cold. The sun is gently shining and reflecting off some chunks of snow still left on the tree limb outside the window where I'm sitting.  I have just pulled myself away from facebook.  There are link after links of touching videos, articles, stories, and pictures of the lives so violently taken from our little town.  Our collective focus is reaching out once again to unite us in thought and bring us together so that mentally we don't have to face our fears and grief by ourselves.  There was a giant crack in the universe on December 14, 2012.   Evil came in through the crack, smashing in the glass and destroying love.   Little people, and loving adults taken in merely minutes and seconds.  Leaving behind a feeling of hopeless helplessness. as we just pushed ourselves though day after day.  The winter ended, the Spring came, the sun brought a beautiful spring and summer and hopelessness had transcended into helping hopefulness as the true human spirit emerged and our community embraced the concept of honoring those lost by being kind, choosing love, and paying it forward.

That is Mac the Monkey, he came to visit
We, my husband and three children,  live but a few miles from Sandy Hook School, where two of my children attended for their elementary years.  We live less than a mile from the home of the young man who went crazy with evil intent and drove to that school never to come out alive.  We see the balloons on street signs, sadly blowing back and forth in the wind reminding us of a special child's birthday.  We drive by the homes of the heart broken families every single day, multiple times, and always think of them.  Always. Every time.  We attend church together, we pray together.  Siblings go to school together.  We go to the Big Y and see one of the Mom's doing her shopping get stopped by a friend, and given a hug.  And we keep going about our daily business.  But sometimes you find yourself reminded, and it is as if we are tied to this place by both our grief and our love for each other.

Our children have been altered forever as they cross the the next channel to the other side of their new grade, new class, new friends, and on to college.  It can be really hard to explain the sick knotted lump we feel each time we drive through the center of  Sandy Hook, because sometimes it just has no descriptive definition using words.  It just is.


Living here, as we have since 1994, has been a blessing.  Two of our three children have had a life enriched with community, great educators, music, theatre,  spiritual love, sports, security, and great friends.  So many happy child hood memories.  And now, their elementary school has become somewhat of an American Horror Story location.  Sucking away those memories and replacing them with visual images of brutality and bullets.  We try to return to the happy memories, but as humans, doing that still breaks our hearts.  They walked those halls, went to those classes, knew that school as their comforting home for all of those days of their childhood.

Living here we try to grab hold of that life line which is hope.  We encourage each other with warmth and kindness.  We turn away respectively and give people their privacy to grieve and to experience what they need to experience as human beings.  We know each and every name of the 26 lives lost that day, and we will never forget those names for the rest of our lives.

For me, living here has been a road of ups and downs.  Prior to 12/14 our neighbor tragically lost their son on 11/8/08,  and grief was already living on Bennetts Bridge Road.  Prior to that, about 28 years ago, my direct neighbor Betty lost her sweet 3 year old daughter Bridget, struck and killed by a car on Bennetts Bridge Road.  Grief already lives here. And as a very active member of the Special Needs community and support groups, I can not even tell you how many children we have had to say goodbye to who have the same condition as Daniel, or who are sick with other conditions.

Living here,  there is life with Daniel.  The one of my two children who never attended Sandy Hook School because he was too medically fragile to be mainstreamed.  Daniel always came with me though, and many families remember me always trying to get Daniel's wheelchair into a classroom where an event was taking place.  Daniel was always so happy to be there.  Sarah and Thomas were always the kid "with the brother in the wheelchair".

In my home, especially in the winter time, I feel a great urge to let melancholy and depression just sink in like a cold avalanche of snow.  And yet, I too grab onto the life line.  Daniel is now 16 years old.  Our life is far from normal. I'm under tremendous pressure every day.  I worry about seizures and respiratory arrest especially when he is at school and I am not there.  Daniel is a magical child, who has captured the hearts of so many Newtown children and adults.



And it spread to the entire world when we had a card shower for him, and he received almost 900 birthday cards, and gifts.   Yes, I wrote 900.

Daniel does not have the same emotional connection to 12/14 that so many other children do.  He doesn't have the cognitive understanding of what happened that day.  He probably remembers how sick he was last December 14th, but really he is just as simple as knowing what makes him happy, and what fascinates him.  Perhaps I underestimate him.  But I like to believe that he is a protected spirit bringing love and light into our world.  He doesn't have to feel many of the complicated emotions and fears that the rest of us do, and that is not a bad thing really.

Growing up in Newtown, CT
Living here in Sandy Hook, CT, tucked away in our house on Bennetts Bridge Road, we are doing what everyone else is doing. Continuing to proceed.  However, we have new priorities in our hearts, or stronger focus in our minds, of being kind to others.  It is critical in the human spirit to stay happy by helping others, by paying it forward.  I believe that God, and the spirit of God, works through us, through our relationship with the living God, to spread His love and good works.  Opening your heart to let kindness in, allows that space and light for God to fill you with his love.   And we can do this, while we grieve.  We can continue on.
Living here in Sandy Hook, CT can feel like an anomoly at times.  Ironically a mix of very different people on very different paths.   Some people are extremely wealthy and still maintaining a life that is self focused, but others have changed and are realizing that their very neighbors may need help.  The stories of kindness on Facebook, are amazing.  People are starting to pay attention to helping their neighbors.  To slowing down and really "seeing" who we live with.


As a Mom, living here, in this house, struggling to stay on top of the needs of a very fragile son, I often wish that there was more I could do for others.  I can hardly pay my mortgage, and Christmas is a time of stress and anxiety.  But 900 birthday cards???   Obviously my son, without even trying, has brought something special to so many people.   I can share his love, I can let people know how much the Special Needs community needs help.  Many families are very proud, but they are struggling.  And if people could just realize the magic, and life changing force that a child like Daniel and so many others have, they would be touched and changed forever.

We are here.  In this house.  With this boy. Who is non verbal. In a wheelchair.  And very fragile. He is finally doing well in a December (the past two have been in the hospital) So if that is the Christmas gift this year, we will take it. It's cold. We can't go out with him. His van doesn't drive well in snow and he can't tolerate the cold temperature.  What can I do?  Just think about the little drummer boy, and it will come to you.

What is it like to live here in Sandy Hook, CT?  Its beautiful.  Simply beautiful.  Evil will never win here.  Love wins.  We really do choose love.  I hope you will too, where ever you live.


Julie Hasselberger

12/12/13

When Looking Away Is The Most Compassionate Thing We Can Do | Cognoscenti

When Looking Away Is The Most Compassionate Thing We Can Do | Cognoscenti

Monday, December 2, 2013

December already? We just had Thanksgiving!!!!

December 2, 2013

A Monday morning it is, gray and dismal I think.  Adding insult to injury the septic truck just came and cleaned out our septic! Now the three words are gray, dismal, and stinky.  But somethings we have to do are simply stinky, but necessary.

Thanksgiving was alot of work for me physically.  I cleaned and moved furniture and sorted and cleaned again.  The fibromyalgia is so bad right now that I could hardly move on Thanksgiving morning.  But I overdosed on Advil and pushed myself.  It was nice to see family, and especially nice for Daniel who can see his family and also be in his home with his nurse.  Daniel is now 16 years old, and yes he had a spectacular birthday!!!  Lots of birthday cards came, and I am STILL working on them, but he has a giant mural of them in his room and some of them will be framed and put into scrap books for him to enjoy.  He loves looking at them.

I ate way too much pie.  Just had to say that.  After everyone had left, I had lots of pie.  I am feeling depressed so having a giant apple pie in my face was not particularly a good idea.  Oh well.

Daniel is doing pretty well. He just is not sleeping through the night.  He is having sleep study this month, to see if there is any apnea going on at night. I suspect, as does his pulmonologist at CCMC that he is having breathing issues at night.

Needless to say, I'm basically exhausted all the time.  When I can get a good solid nap in, I feel somewhat healed from the fatigue.  I did see a rhumatologist recently, but I just don't have the time to follow up on all of the things they want me to do right now.  I'm a pretty sick lady.  Kind of a hot mess really.  But I push myself through it.

One of the things I loved about the cards, was how many were sent from the support group families.  It touched my heart really really deeply.  They know.  They understand.  This journey is not a solo journey.... I think it is like a virtual giant NYC marathon of families all over the world.   We are all at different points in the race, but we are moving along facing very similar challenges.

Daniel is the love of my life.  As are my other children.  But he just has something in those eyes that is so pure, innocent, and true.  He brings out the best in me, that's for sure.

So where are we today, on December 2, 2013?  Daniel is at school with his nurse, Marques.  Thomas is at school at Newtown Middle School, he is in 7th grade, he's my little Baritone sax playing prodigy.  Sarah is back to college after 5 days home for the Thanksgiving break. She will have finals soon, and its amazing how fast the semester went by.  Henry is napping in his crate.  The cats are sleeping.  John is at work, he works at Hologic in Danbury, (breast imaging equipment people).  And Julie? Well....  I am sitting at my desk, in the quiet, writing.  By my side is an enormous PILE of bills, cards to send, and a list of people I have to call. Bloodwork, endocrine, flu shot, follow ups....  I am completely overwhelmed with how much everything costs, and simply trying to juggle it all.

I'm shivering.  I don't know why because it's warm in here.  It's all consuming, and quite depressing because I never get to the finish line of anything.  In front of me, in a file holder is a folder that says, "Nursing College", my biggest dream is to go back to school and get my BSN.  However, it is the farthest dream from reality right now.  I have too many issues in my house to contend with.

So carry on through this Monday morning, as gray and dismal as it is.  I wish I had the stamina to search Cyber Monday sales.  Christmas will just have to wait..

I'm sure I gained weight over Thanksgiving, when you are depressed, stressed, and have to walk on eggshells all the time, food becomes an obsession.  Yes, I need therapy with this obsession.  I wish I could get like, Oprah Winfrey, or Dr. Phil, or some famous person to scoop me up, put me on TV with all of my life story, and fix me.   I would love that.

Instead, I am going to spend time doing what is the best thing.  Praying.  Praying. Praying.  Time to go.  I need to upload videos to my Youtube channel, Julie Hasselberger.

Have a wonderful day friends.  Please do something kind for someone else today.  Acts of kindness are necessary food for the soul.