A QUIET BIRTHDAY

John William Hasselberger turns 48
Happy Birthday to my husband
Reflecting on life in the future with Daniel

November 1, 2014

The start of a new month, and a sample of what the future has in store, I suppose. With both of my other children away, it was just John, Daniel and I in the house this weekend.  The quiet is both relaxing and unsettling at the same time.

Cold air blasts around the leaky windows and leaves have once again made a blanket of mess on the lawn. I am reminded of the work that needs to be done on this house that I just can't afford.   I am suffering from terrible sinus headaches and it seems that the bad weather is truly on its way.  John turned 48, and we really had an uneventful day just trying to buy him boots took energy.  We never bought him boots because he is one man who is hard to please, and has buyers remorse.  He is a funny simple guy with a giant sarcastic sense of humor and self battles with controlling anger and fighting his own demons.  He's been calm and pleasant lately and that makes me very happy.
We still still love each other very much.  

I wonder what life will be like when Daniel is older and we are older.  Where will we be? November is always a pivotal month for me.  I don't look forward to the holidays, because its completely materialized, but I do look forward to being together with my family.  We don't often leave our home anymore, because having a teenager who is severely disabled makes visits to other people's homes quite difficult.  No ramps, needing to change him, screaming meltdowns, positional discomfort etc.  Long drives are hard on him, and to drive him three hours to a place where he can only sit in one spot in his wheelchair while everyone else eats and talks, makes me feel sad for him.   So as the years have progressed, we much prefer to arrange for a nurse on at least part of the holiday, and just have it here at home.  Very few of my family members or John's actually come to visit.  It breaks my heart because I am the social extrovert, but I can't put Daniel through the travelling trauma.   So what has happened?  We have cousins, and even a grand niece that we have not yet met. Relatives have just "continued along" and not included us, because everyone just assumes we are not able to participate.

That being said, I have no ill feelings towards anyone related to us, I know everyone has their own bundle of things to do and places to go.  Thank goodness for face book, because I would know absolutely nothing about my cousins in distant states.  I've tried to communicate with most of them, but only three actually reply in any depth.  I have accepted that we are, in many ways, like outcasts, due to the different type of life we live.  It does not mean we are unhappy, but we are limited in what we can do, and where we can go.

So we carry on in quiet. Surrounded by the comforts of home.  Quietly separated from the world where normal "mobile" live  in our limited capacity situation.  Keeping Daniel happy and healthy takes alot of energy.  Ensuring that Sarah and Thomas get as much love and support as we can humanly give them.  Friends in our local community provide so much kindness and love.  If I needed anything, and posted it on line or in the Bee, someone in this town would make it happen.  And sometimes we do small random acts of kindness ourselves, just to give back in some way.

Anticipating the holidays, also brings memories of sadness and loss here at home, so sometimes quiet reflection isnt a bad thing.

Being the Mom of a child who can not speak, or walk, or talk, will forever leave me curious as to what is going on inside his head.  That sparkly smile just melts my heart.

John had a very quiet birthday.  He is ok with that.  On facebook, people go to wonderful Halloween parties, our to fancy restaurants, and have fun time with family.  I would have once loved to get all dressed up and go out somewhere fun.  But nurses leave at 5 on weekends.  That is my reality. As I have come to accept it, I have let go of wanting to do what the "normal free mobile non disabled" world can do, and I have accepted that the quiet love, and necessary care giving is God's calling for me.  I am lucky to have my son still with me.

So it was quiet yesterday, and today.  I will be glad when it is January and we are moving towards the Spring.  I will invite many people to come an visit for birthdays this month, for Thanksgiving, for Christmas, but few if any will be able to make it.  We are not exactly close, or on anyones priority list, except for our immediate family.

Sarah turns 19 and Daniel turns 17 this month.  So much to think about.  We are driving along a bumpy road in an old car, we hit pot holes and big cracks, that is the metaphor for my life.  But we don't stop because we know that our destination is going to be the most incredible fantastic place. And the road will eventually stop being bumpy.

Happy Birthday John.

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.

My motivational Moment of the day

Facing the Giants - It's all heart from here

Everyday when I wake up, there are giants looming all around me.  Waving weapons of responsibility, advocacy, fixing things, bills to paid, phone calls, piles of papers, things to review, appointments to get to, procedures to schedule, earn money$$$, work harder, house is falling apart, kids need clothes, therapy, college, mortgage, utilities, doctors, supplies, medicine, laundry, manage it all giants.  Giants each wearing a jersey that says what they are. They intimidate me and make me want to pull the covers over my head.

But I have no choice but to face them.  There will be a day when the giants become virtually insurmountable and the decision to push will not be an option.  We are that way, when we protect a child.  Nothing else matters.  And when you have a child with special needs, who is incapable of doing anything for themselves for the rest of their life, indirectly that is a giant you have to dance with for the rest of that child's life.

This video is not about a highschool football team.  It's about the gift of leadership.  This coach pushes Brock farther than he ever thought he could possibly go.  Because Brock couldn't see, and he just had faith in himself and in his coach.   "It burns", "I know it burns!!!".... "It's all heart from here"

I feel like life does that to people.  People go about a life, that is safe, controlled and comfortable.  They have what they need, and they proceed in a routine way.  No disabled people, no sick people...just normal life.   

And then there are the people who face great trials. The birth of a severely disabled child, cancer of a loved one, loss of a child, losing a job and all security, and whatever Giant "Giant" falls upon them.  

You then put your faith to the test.  It's then that you realize the true meaning of  "its all heart from here".  Blood, sweat, tears, pain, and you just keep on pushing.   Putting yourself out on a limb and leaving it all in God's hands you just keep on going.  Then you fall down.  It's give up time. It's time to just say forget it, I'm too weak, it burns, it hurts too much, I can't do it.  And while you lay in your defeat a voice says to you...  "Give me your best Julie.  This is NOT your best.  Get up.  Don't stop. It's all heart from here.  I'm here for you. I am with you. I love you. I will sustain you. Get up. You are better than this. Don't fall to despair and don't fear, because when you get to the end of this difficult road, it will simply turn into another difficult road.  Winding and winding and winding.  But I will be here.  Don't stop.  You will be rewarded.  I know it's hard.  I know.  Don't look at others.  Their choices are different.  You have no choice.  I know you won't stop. 

So, I take a shower.  Drink 3 cups of coffee.  Pull my messy hair up in a clip and sit down at my desk, facing those giants.  Or sometimes I just ignore them.  Or sometimes I just pray for help.  Or sometimes I need help.  But I don't go back to bed. I don't sob into my pillows until Daniel comes home from school.  I make calls to doctors, I call about bills, I negotiate with creditors, I figure out the oil price plan, I order more diapers, I order more medicine, I schedule a 6 month assessment with DSS, and then I go outside to walk my little dog Henry.  We practice his commands, and we take a walk.  I am definitely not alone.  

Faith lifts me back up, every time I remember to ask God to please please please lift me up.  

I can't wait until Daniel gets home from school each day.  It's a gift that he's healthy and with me.  And it's all heart from here.

Daniel returns to school... August 2012

August 30, 2012

Here I am again..

After an unsettling issue with the Newtown school system making unapproved changes to Daniel's IEP.   I was able to get the school system to reverse what they did and restore Daniel's nursing services.  I don't really understand why they thought they could get away with taking away his nursing program...but they didn't.   Thankfully we did not have to retain an education attorney, but the mental stress this put on me one week before school began was definitely unnecessary.

And happily, Daniel was able to get on his special wheelchair bus on Tuesday and attend school.  Daniel is NOT mainstreamed into regular school.  Technically, I guess, he would have been a sophomore in high school by now.  But he attends a special program called STARR in Newtown's 5th and 6th grade school.  It is comprised of special education teachers, therapists, and nurses.   And even with all the help in place, we still have to be ready at any moment for the next phone call to come regarding sickness, or problems.

Really, the concept of school for Daniel is kind of hard to wrap your brain around when you are used to the traditional way of life.  He has no "grade"...  he just goes to a program where he can do his "thing" and apply it to educational topics and activities.  There is no true way to measure what Daniel knows and doesn't know...although we try setting goals for progress. And sometimes he meets them.  Using an IPAD at school, was a great idea...  as was the eye gaze dynavox system.  The important thing is that he is healthy, safe, and stimulated.  Most of his day is spent in variuos therapies (speech, Occupational, Physical) but he does get to go to the typical classes like music, art, and gym.   Its been a good compromise to give him some peer intervention.

Daniel's first day of school and new bus!

Checking out the new bus...very curious

And off to school he goes!!

Brother Thomas is in 6th grade this year, and his classroom happens to be right underneath Daniels!  Yay!!