On the topic of fundraising and helping eachother

There is no shame in reaching out for help.  The reality is really pretty bleak for most families dealing with any kind of massive medical crisis.  Every weekend there seems to be a fund raiser, or cut a thon, or story in the paper about someone who is doing something on behalf of a loved one.  Disabilities, cancer, medical trauma, ...these are not things we plan on.  They are not part of the American Dream.   When I walked down the aisle on my Wedding Day 19 years ago... I never anticipated that my life would look the way it does right now.  Not after triumphantly completing my Masters Degree and setting my sites high on the corporate ladder.  I was an advocate of "Working Mother".  Now I am a mother who is an advocate of a severely disabled child.

But with all the love I can muster and the strength I can find I am trying to give him the life he deserves...and that makes it all worth it.   There really is no "plan" that is in our control....   There is no such thing as control either...   I am a Christian, and through prayer and hope and faith...  I learn the skills I need to continue on this mysterious journey.

But I can't do it alone.

October 2011

Dear friends,

As you may, or may not know, our son Daniel (13) has a severe condition known as Polymicrogyria. His brain is about 80% deformed.  It goes without saying that Daniel’s life is precarious and each day he faces seizures, respiratory fragility/aspiration risks, and overall physical and developmental problems.  He is fed via g tube, can not talk, is in a wheelchair and has developed scoliosis this year with his growth.   He will require surgery to correct this. 

I have put together a terrific team of medical professionals, and therapists that see Daniel and work with him as much as his insurance allows.  I manage his many doctors appointments, hospital trips, insurance bills, equipment, educational intervention, medication and supplies, and most importantly providing Daniel with a joyful quality of life, a safe home, and comfort.  It is a full time job.  I was terminated from a full time job in 2002 because of Daniel.  Shortly after that he needed major hip surgery at the age of 6…and I had to put my job search on hold.  It is still on hold…as his needs have significantly increased with growth and age.       

I’m raising funds for my son because we have so many needs and expenses that raise the bar so high above normal life!.     I have started a blog/website  julieandjohnhasselberger.blogspot.com   with ongoing updates that I am going to keep current.   

Looking. Searching. Seeking. Praying.  Mostly praying.  For resources.

And asking people…

“Can you help in any way help our family”  The goal is reach $10,000   in order to pay medical bills, pay for van repairs, pay an $1800 therapy bill,  repair our home(needs a lot of repairs), and set up a Fund in his name in order to build for his future.  He needs a new car seat ($800) and now Medicaid is not paying for diapers so we will have a huge expense there.  

  “Do you know anyone…or any resources…or is there anyone else I could talk to?”      Its ridiculously difficult to take care of a disabled child in this economy, and we have a family of 5.   

We can survive if we can take care of Daniel’s expenses.   I am planning on going back to school for my nursing degree. I have a Bachelors, and an MBA in Human Resource Management…which provided a great career for many many years.  But the traditional corporate world doesn’t accept professionals who have been out of the work force for awhile, and who need flexible schedules.  

Perhaps you know of someone who can…and you can forward this to them. 

With much love and gratefulness,

Julie Hasselberger

Psalm 34

Hasselberger Contact information

Julie, John, Sarah, Daniel and Thomas Hasselberger

35 Bennetts Bridge Road

Sandy Hook, CT  06482

203 426 8674

203 788 9602

jhasselberger@snet.net

julieandjohnhasselberger.blogspot.com

Nursing School

I have wanted to pursue my nursing degree for almost 3 years now...but the critical state of my finances, along with the daunting task of taking care of Sarah, Thomas and Daniel has slowed me down.  For several years I thought...let me do this Primerica thing and I became fully licensed in Financial Services.  I failed miserably because it required much more than I anticipated.  And I realized I am not the best at Sales and quasi-tricking people into believing that they can have a life of financial independence if they just drink the Koolaid.  I made great friends, but I was in such deep doo doo with my own money...that it became too much of an ironic twist to help people with their money.

All the while...  Daniel needed, and still needs me.  In 2007 we started having nursing care through Medicaid.  And it gave me a little time to breath.  Work some part time jobs...for some money...  and think.

Going to Florida and back I also realized that I had to find some sort of back ground that is transferable.  And I spend more time in a medical capacity than anything else...and love it.  

I just simply do not know where to start....and how to do it.  With literally no money for school...and a child going to college in 2 years it is a Catch 22.   I need a career that will let me work flexibly...around Daniel's nursing and care taker schedule.  But I also have to get the schooling done.  Which I dont mind...I love school.

This has been my puzzle....and I need to solve it.   My husband wants me to go back into Human Resources Management again.  But so far no one wants a 45 year old prior HR Manager who has been out of the full time work scene for 9 years.

And I guess I don't blame them.  I used to do recruiting too.  But I am a very highly functional individual.

I need to solve my puzzle.  Take a step...build my own money again.   But I am here...taking care of 3 children...  doing virtually everything regarding Daniel's care.

I wish someone could guide me...give me a direction....  I want to be able to survive and still care for him.

Dear Mommy

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.


I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )


I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. 

Giving Thanks to People Who have helped us

In my work as Daniel's advocate, and often time... fundraiser/resource helper...  or survivalist...whatever that title is...

We have been blessed over the years with help, both financially and supportive from so many people..

The Scotty Fund - An incredible gift to this community...and the help they give to families with disabled or chronically ill children.

The Win Win Foundation - No longer in existence, but a strong part of our past through all of the friends we made there...and the respite nursing they provided allowed us, back then, to have a break and enjoy a night out once in a while..  among other financial help...  But the people we met there continue to be our friends to this day.

The Molly Ann Tango Foundation - Another amazing foundation that has helped us with Daniel's needs, and even support for Mom's at an annual Mother's day luncheon fundraiser...

Save a Kid Foundation - An organization that reached out and helped us significantly with Daniel's renovations and needs.  They are also helping us presently to acquire a special needs Trike/bike for Daniel.

Make A wish Foundation - in 2004 they granted a wish for Daniel and purchased a swing and playscape for Daniel to be able to swing and be around his siblings as they play.

Dream Come True Connecticut - In 2010 we were granted a wish to take Daniel to swim with Dolphins...it was the trip of a life time.


There are people in this world who genuinely care...who know how hard the struggle is....and want to support families like ours.   Private and public people who have just met us and wanted to help.  I can't say thank you enough in this life time.....

But the journey continues....and I am working so very hard to pay bills and keep the house and get wood for the winter and the very basics of life.   I want a job too...  but everytime I try I am rejected because I've been a "Stay home Mom" if you would call it that.    ANY HOW....  advocating for a severely disabled child... A FULL TIME JOB people  Totally.  

The end of the year is always the hardest for us...  there is never enough to do everything that everyone needs so we cut back, and cut back, and cut back...     I keep praying that by some miracle I will come across a grant or a foundation that will help us.  Social Security Disability?  nope...they reject us.    I just need help, and I ask God every day if its wrong or right to do so....but then I look at Daniel and he looks at me.  It is, for now, the way it has to be.

Peace All.

College and the Future

Lean on me Always Daniel

Well.....  last night I attended a very excellent seminar at Newtown High School entitled "How to Fund College" ....   Sarah is a Junior, and I have to learn all that I can now.  I started envisioning her, walking around a campus, laughing with friends, sitting in lecture halls, studying in a library, and even working...  and I know that my daughter is going to find her place in this world.

And then I thought of Daniel.  Daniel would have been a FRESHMAN this year. And yet he is on a different path isn't he.  He is with us...  just always.  He won't graduate from anything, drive a car, get a job, or get married.  As a man, he will be with us.  And I wouldn't want it any other way.  But the "what ifs" of the future are puzzles that just can't be solved right now.   My sweet boy, who needs me for 100% of his survival...  is not a part of any "plan"....   I am lucky each day that he wakes up, and has a good day health wise.

This is where being the parent of a disabled child really warps reality.  The love they teach goes beyond what you can ever envision when you first learn their diagnosis and the shock sets in.  The journey is riddled with trauma and tribulations...  struggles and sacrifices...fear, confusion, decisions, and so much pain.   And yet when triumph over comes, and healing begins after surgeries, or bankruptcies, or whatever happens...  there is a sense of enormous satisfaction that fuels the resolution to be stronger and even more prepared next time.

Because there will be a next time.

College.  I know we will make it happen somehow.   But for Daniel...  we can not even plan past tomorrow.

And life doesn't care.

Sarah Rose Hasselberger my bright shining inspiration

Daniel Plays Basketball

This year, Newtown started its FIRST EVER special needs basketball program called Hoopsters. Although Daniel was the only child in a wheelchair, he enjoyed it very much. So much love and detail went into that program.

Shown in the picture is Marques, Daniel's nurse, who volunteered to be one of Daniel's "buddies". There were about 21 special needs kids in the program, and they loved having their own jerseys!! At the close of the season they were given medals. Marques lifted Daniel way up high and helped him slam dunk a basket!! (something John and I couldnt do because we are toooo short!!!)