Special Needs Mom's 2014 Goals and dreams, bumping the track of stress

Yeah, so here it is. HAPPY NEW YEAR. 2014

Time to "start the resolutions"

When is minus 2 degrees outside the air hurts to breathe. I don't dare bring Daniel out because he doesn't regulate well.  So its winter and I get it.  We live in a place that is horrendously expensive and has weather that gets too cold to function in.  I wonder how many days out of the year I keep Daniel in the house to protect him from the elements. Probably alot.

The Holidays are over.  They were remarkably uneventful and relatively normal.  It goes without saying that the out going nature in me misses going to Christmas parties, out for dinners, and just doing fun things.  The big event was a trip with the kids to see Frozen.  Daniel really deserved to get out of the house and it was New Years Day.  That trip cost me $47 plus another $20. for food and that was WITH a free coupon for popcorn.   It is incredible to me to that many people go to the movies all the time.  Now, I LOVE movies, but have to watch them when they come to cable.  It's cool.  I almost never can get away anyhow.

Keys are falling off.

Crashes all the time

The holidays are usually a struggle and half ($$$).  This year we managed to get the kids a couple of things that they really wanted, but not everything.  It seemed like they were happy and satisfied and grateful.  Then there was the mysterious IPAD that was shipped anonymously by one of Santa's Elves to Daniel right before Christmas. The person sent it anonymously.   He loves it, and uses it for hours and hours.  The pay it forward, "acts of Kindness" runs rampant in this area.  I am so grateful for that gift for him, because there is no way we could afford one.  In fact, my laptop is an 9 year old Dell Inspiron that is slowly dying.  My dream lap top is a MAC book, because I would really like write more, and publish more videos.  My new years resolution is to become better at video blogging and making interesting videos.  However, it is virtually impossible on this old clunker.  My laptop is missing the R key.  What I type, I have to press ten times hard where the R used to be and it works.

Live to dream

I'm dreaming of a MacBook

Live to Dream

I don't know what to say about my goals and dreams.  I have them. Such as the big one, enroll in an RN accelerated program, start working out at a gym again, write down more information and ideas about how to take better care of Daniel, become a better wife and mother, get healthy,  and get myself a new lap top, and a new sophisticated video camera.   And I have already started the number one goal, which is to get my butt to church more often and make Christmas bigger than just the holiday.

So it sounds like its feasible yes?  It would all be perfect and I could be happier and healthier.  My kids especially Daniel would have a better life because I could provide more. I would have self satisfaction and self esteem improvement.  I would develop a new career that I love which would be flexible, that I could take with me to Florida someday. (SOMEDAY I DREAM)   I would look better.  I would sleep better.  I would have technology at my fingertips and it would allow me to do so much more for my family and for others.   So one of the biggest prayers I have, is asking God how can I get to this place when I don't have a

penny to my name.  The financial pressure and stress sucks my cash, and my energy. I have an insurance license for property and casualty but I completely dislike selling insurance.  I'm sick most of the time.  I am at least 70 pounds overweight.  The gym cost too much money.  Walking is ridiculously out of the question on a consistent basis. (um minus 2???)    I have zero credit because we are still dealing with serious issues from past debt and medical bills.  My cars are falling to pieces, well, mostly the Windstar.

This, my friends, is just an example.  Have a goal, hit a wall.  Have a dream? Feel it die. Want to progress? It all cost money.  But the real hard part is Daniel.  Daniel could be enrolled in swimming programs and be stronger. If I could afford it.  Daniel would have better therapy, and would go to external programs that would help him stand better, get stronger, move more.  Daniel would have more technology and more time for learning.  Daniel would be 100 times more advanced than he is, if I just had the time and money and health.   I look at him sometimes and I feel sick to my stomach because he has so much potential to do SO MUCH more and I just can't get to that point.

I DONT KNOW HOW TO CARRY DANIEL ACROSS THE GAP!!!!

People let me tell you something, it is not a cliche or a robotic repetitive whine when I tell you that I want so much for my family, my children, my life, my marriage, my community, my world.  But raising a human being who is 100% reliant on you for their complete life and needs, is a BIG DEAL.

All of the things I dream for.  Wish for. Try to plan for. Fall tragically by the wayside because the resources are so lacking.  Just paying the basic life expenses is rough.  You want to stay in your house? Well, yes, I do because the schools are outstanding for Thomas, and Daniel is still a part of the schools, and we couldn't sell it if we wanted to anyhow.  Plus it is modified for accessibility, partly.

Hear me. Please.  I have goals that to many would simply be the swipe of a credit card, done.  The writing of a check, there you go.  But I am stuck in a perpetual rythym of stress that prevents any of the next steps from progressing.  It's about money.  It's about health.  It's about exhaustion from trying.

My blood pressure is high now, and I am on a pile of medications for "stuff".  It's ridiculous because our medical costs are rising for Daniel, and for Julie.  It could be the other way around.  Yes.  A laptop, the mortgage, a reliable car, a new education, a commitment to health, and I will say, etc.   Yes my world would flip upside down if I could break the cycle.

But how do I do that?  How?  SuperMom only has so many waking hours.  Every penny is needed just to feed us and keep us warm.   How do I grab those dreams and push forward for my son.  FOR MY SON, when I can't even get credit enough, or a loan, or a job.   I rattle and shake myself trying to figure it out.  They say "you are doing such a great job taking care of Daniel Julie."  Thank you, I say.  But in my head I think NO.  NO I'M NOT. His hamstrings are tight, he needs to be in water, he needs to do more, see more, learn more.  There are thousands of things I could be doing for him.

And all I can do, is take a nap, and pray that my debit card works because I need to pick up prescriptions.  Perhaps there is a helping force out there that could bump me onto the track of my dreams and goals.  I was there once in my life.  Bump me into a place where things are possible, and my enthusiasm and hope returns. Perhaps in a Dr. Suess kind of world I would find someone to lift my dust spec up and save me.

It's minus 2.  My laptop just crashed twice.  My pointer finger hurts from hitting that R key.  I have stress because of the above mentioned things and I am going to spend the next hour trying to destress and get my blood pressure down.   Sigh.  Where is my bump to my dreams?

Daniels Finger Print Tree

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.

Essay "what it means to be a grown up"

I found this essay today, that I had written 3 years ago. Made some edits... and here it is.  I was answering the question about becoming grown up.

Honey Moon full of dreams for the future

Real Simple Life Essay Contest

Julie A. Hasselberger

“When did you first realize that you had become a grown-up?”

Graduation day for my MBA with a concentration in Human Resources!

As a driven professional woman, I suppose I could write about working my way through college, or the three jobs I held while I completed my MBA at night.  Perhaps it was when I walked down the aisle and married my college sweetheart.   Buying our first house in Newtown CT,  (felt pretty grown up then, and scared).    Then having our first baby…it was like we were the epitomy of the typical couple following the steps into yuppie happy parenthood and career lives.     Through all of the steps I followed,  from high school to career as a successful and educated Human Resource Manager....    I always still felt free spirited, young, vibrant and ready to take a risk and live life.   We could go and do things even with our daughter, life was full of possibility and joy.      All of the normal things that most adults would classify as “I am now officially a grown up” , in reflection were still a joyful exciting time. Life was so perfectly laid out for my husband and I.   As if we had a  “rite of passage into the goals and dreams that I had so carefully planned out”.   But all of that was to changed drastically, and the plan fell apart.

Very early dreams that Sarah would love music!!!!!

Daniel as a baby...I was still working and he went to Merry Hill Daycae

 Daniel John Hasselberger, our son was born on November 22, 1997.  We celebrated with joy the birth of a son!  How perfect life seemed.  But the rhythym was changing.  There are no words to describe the feeling of having the doctors tell you that your son, your second born…the boy your husband had rejoiced about for months planning baseball and boy “stuff”… would spend his life in a wheelchair, diagnosed with a severe disability called “Polymicrogyria.”    You see, now I have this boy…who depends on me for every aspect of his life.  His health is fragile.  I left my career goals behind,  to be here to care for him.   Both my husband and I truly “grew up” when we became Daniel’s parents.  We were slammed with adversity and pain, and maturity shoved down our throats with having to adapt and reengineer life.

Now,  going through all of the activities of life and raising my children, includes pushing a wheelchair, changing diapers of a 14 year old, 911 calls, ambulance rides, surgeries, special equipment, communication tools, IEP meetings, 9 different specialists, therapies, home accommodations to have a safe place to care for this child who is fast growing into a young man.  So incredibly needy, and so amazing and wonderful….his lessons of gentleness and unconditional love have transformed my entire view of the world.

Sarah loved coming to visit me in my office at work!!! 

 I really loved my job at ITW Highland in Waterbury.  After Daniel's health insurance expenses soared, and I had another baby..Thomas..  my employer began treating me differently.  I went from being on the corporate succession plan, to being ignored for the bigger projects I was good at.  Although I had exemplary performance reviews and total dedication to the people I worked with and the Waterbury community...  I was "downsized".  With proof of discrimination, and many things that were either blatant or just didnt make sense,  I went to an attorney...and then realized that I didn't want to work for an employer who discriminated against a mom with a disabled child.  So I accepted the separation package and they consolidated plants and retained only one HR Manager instead of two.   I was totally devastated.   Shortly after that demoralizing episode, I wrote an article and the John Walsh show contacted me to be on the show.  

We were guest speakers on the John Walsh Show!!

John Walsh presented me with an entire home office!

Skiing ....  a passion we loved and still miss

 I sometimes remember back to  “the plan”…  and reflect back when I was working full time and loved my career.  I  enjoyed my independence and the satisfaction and confidence it brought me.  I made a very good salary and had a position with autonomy and decision making responsibilities.   I was a true “Working Mother”, and happy about it.       When my daughter was in day care, we had the whole balance thing all perfectly worked out.     The plan that most young families I know are engaged in.

Yes...I was a thin, fit Aerobics instructor and fitness trainer

 I still have this inner pain, and feeling that my freedom was taken from me. The boy was supposed to be the next step in the “perfect American Family”.   Instead he came to the world a very needy and very sickly child.  It hurts, and it stings, and I spent years in therapy and finding peace with my spiritual self.  I had to let go of the “why me”.  And hold on to the love that Daniel has brought to us.   It’s a transition that I think most parents of special needs children go through.

Being a Mom to a boy who cannot speak, walk, or do anything for himself…put me in a new classification.  No longer was I a career driven person.  I became Daniel’s Mom., and advocate, and source of all need.   Our world revolves around him.    Yes, he is fourteen now…and Yes…football games, recitals, musical concerts still make me cry and wonder what Daniel would have been able to do.     My other children..ages 16 and 11… are growing up here in Newtown and they are amazing kids, with compassion and talent and security from being in such a close community.   I do my best to meet everyone’s needs, but sometimes,  it is really isolating and sad to be the only mother on the football field with a boy in a chair, hooked up to his feeding pump.  Or the only family in theater, always searching for the handicapped space.

Sometimes it hits me that it has been over 6 months or so since my husband and I have had any time together.     We have nursing care, and that has helped.   But Daniel still needs me nearby, because a seizure or respiratory distress can happen at any time.

I became a grown-up, when I became Daniel’s Mom…because all that I was, and all that I dreamed of being had changed instantly.  My freedom was gone, to take risks and be the crazy girl that I loved to be.  Me, Julie, well, I  was a typical, outgoing , focused on myself, looks, nails, hair, clothes, always working out, full of pride, and  just being free willed. I remember feeling that we were going to be “that” family who goes skiing together, rides bikes together, goes on adventures together.    I had hoped that we would have that kind of fun with our kids.   Instead we faced the harsh reality of financial hardship, physical problems from stress and sleep deprivation, and relationships strained from the difficulties and degree of complexity that every day presented.  There would be no free spirited life for us.         

We loved to travel...had dreams of travelling all over the world...  Here on a sailing trip off of St. Lucia

This was in the days of "what ifs" and "why me"

 But in its place, is this magical young man, with the face of an angel. He is my world.  As long as his precious life remains in my care I will always do my best to take care of him.  Taking care of a special needs child, required that I grow up and face this responsibility, use all of my knowledge, assertiveness and abilities from my education and experience.  Take all that I have, and all that I am and use it now.  NOT for myself, for my family.     Daniel was my wake up call to being a grown-up.  To the reality that life has its own design and the best laid out plans are basically useless in our hands.  Being able to adapt in the worst of adversity, and still find joy and love in your life while providing for a family the best that you can. That, is what grown ups do.

Julie Hasselberger

Additional Information!!!            About Julie Hasselberger  

I am a 46 year old Mom of three kids, Sarah, Daniel, and Thomas…and married for almost 20 years to John.

  

This is the day I was baptized at Walnut Hill Community Church

I have been interviewed and praised for my tenacious strength to give this child everything in life he needs… and it is hard exasperating work.

Someday I would love to take all of these experiences and put them into a book…because life with Daniel is hysterical, frightening, and the most joyful lessons…that I ever thought imaginable.

Many years ago our entire family was invited to be guests on the “John Walsh Show”…  because my story about losing my job “due to Daniel’s disability diagnosis” and the impact it had on us…  was inspiring.  And I have a dream to share my inspirational experiences with other families that are facing the same kind of difficulties that we have faced over the past 14 1/2 years raising Daniel.

Julie and John Hasselberger

35 Bennetts Bridge Road

Sandy Hook, CT  06482

203 426 8674