Inspired...and lifted today

Sarah playing in Orchestra

Its a beautiful day here in Sandy Hook, CT.  I just feel like posting some pictures of my kids who make my life worth living....

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. 

Ghosts and fevers

 Today is October 8 2011.  Daniel wasn't himself this morning and was running a mystery fever. Which he often does.  We went out side because the day was glorious and pulled out the old box of Halloween decorations.  Daniel and I put up the Ghosts and he loved that.  He was staring at it as if seeing a real ghost for a second.


There are ghosts everywhere anyways.

Football 2011

Watching the Game with Dad

This year my youngest, Thomas started playing football.  He is a big boy and we knew that it would be good for him.  He pushed himself diligently through all the conditioning.  He was and still is the last one running the laps.  But he never complains.  He is such a great kid.  But when I took Daniel to the first day of training, I didn't expect one of those "sad Moments" to hit me.  I thought I was past that.  Watching the boys...playing and running and catching...  Laughing and making friends.  I looked at Daniel in his wheelchair, quietly looking above the boys on the field at the trees and the clouds..   And tears began to stream down my face.  I felt alone.  I felt different.  I longed for a peak of what it would look like to see Daniel run and laugh.  I longed to hear what his voice would sound like.   And I left.  The next day, Thomas said to me...  Mom... don't go, you know everyone is going to stare at Daniel and you are going to feel sad again.   But I went.  Because it wasn't about me or Daniel...it was about Thomas.     And as the time went by, the families began introducing themselves to us...and Daniel began to be a very welcome spectator.  Some of the Mom's even pitched in and bought him his own "Nighthawks" training jersey.

Its a very hard thing....you see....  To be moving two normal children along a path of growth that is "normal" and progressive into their future.  And at the same time have a young man with you, who is also getting older, but who has no capacity to ever be independent.   Does it break your heart?  Hell yes.   But I tell myself every single day...shake it off...  they all need you.  Daniel is who...he...is.  He has a unique life and you can not "what if" yourself to death.

And I succumbed to hollering and cheering for the team with the rest of the families.  And Daniel continues to watch things in the sky.

Football...  Thomas?  Who knew?     Oh man...writing this post just made me cry.   Dear God please help me provide for this family.

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

Three amazing children

Sarah is incredible... she manages her time (with some degree of anxiety) but her CAP tests were well into the advanced category across the board. She is in advanced classes and also goes to a magnet school for Performing arts AFTER regular highschool....its free for us, and counts as electives. She dances and sings...and loves doing shows...

Thomas is 10 and has just started 5th grade. Loves people...he sports a very well know "mohawk" haircut.  He just started football this year and it is changing his life...  he loves it.  Very sweet and compassionate kid...Also extremely smart.   Doesn't do homework that well...  unless pushed...but that's ok. No one is perfect.

Daniel is 13 soon to be 14.  He is in a special education class called STARR.  He is with a nurse 100% of the time at school because he is g tube fed around the clock.  Daniel has many challenges.  Currently I am trying to figure out how I can still be the primary care giver for him...and afford to stay here.  He is sweet, and gentle and loves to watch things above him...like trees, ceiling fans, lights...    He needs so much...but asks for nothing and smiles at you with gentle peace.

I have three amazing children.  

I wish I could give him the world.....

Daniel At Hampton Beach 2009

Sometimes I wish I could give him the world.  The world as he see's it. He is so visual...and soaks things in with his wide eyed curiosity. But he can not speak.  He loves going places..like to the beach...or to the mall..      

School Picture 2010-2011 STARR Program

Mother lost

Once upon a time I had a career as a Human Resource Manager. I loved it. Now I am lost having tried MLM type businesses and contract jobs here and there. I essentially walked away from an 80,0000$$ a year career. Because of this boy who needed my attention and care throughout three surgeries and too many illnesses to count there is an intangible value to the giving of oneself to the car of a child but a child like Daniel puts it on another level. Yet I have days where I feel totally lost. Because I need to work to pay my bills! But I also have so much to manage for the boy. Sigh. It's conflicting but I miss adults.

It is Fall 2011. Times are kind of tough right now. Daniel has recently been diagnosed with scoliosis. He may need surgery in the near future, as it appears to be worsening with a curve to the left side.

I have found life very challenging... needing to work, but needing to be here with Daniel. We really are battling to keep the house, which was renovated for Daniel's accessibility. But the bills and medical expenses are wiping us out.

Every time I turn a corner it seems like another problem presents itself. Daniel's van needs repairs, we have a giant oil bill to pay, and medical bills that insurance is not covering.

I find myself seeking help again.... which is very hard to do...but we only want to keep our family secure and if our cars die, and we have to move... then what do we do? We live a basic life as it is.

Daniel is a darling kid.... he is turning 14 next month... if there is anything possible you could do to help us. Even if its just a prayer... Please do. Polymicrogyria is a rare but serious and life threatening diagnosis. I live every day fearing that he won't wake up, or that something bad will progress.

We are at 35 Bennetts Bridge Road Sandy Hook CT 06482 jhasselberger@snet.net

Please help us if you can, or suggest things that you may be aware of. There is also a PayPal button on the home page...for donations as well.

I wish I could stay in a full time career, and make sure he is well cared for...but it just doesnt seem to work that way.. no matter how I try. He needs me... I am his advocated, and his 13 doctors, well... we are in the hospital and doctors offices almost constantly.

My goal is to raise $5000 this Fall to pay some bills, and take the pressure off.

Much love... I have to go back to calling doctors...because that is what I do when I have these quiet moments in my office. Someone suggested blogging...and making a new website... I couldnt afford to keep the old one going.

Peace and love.... Julie

Diapers and Teenagers

Having a child, who is 13...but in diapers and on a 100% feeding tube regimen...is alot of work. I have several pretty amazing nurses who help me out...(thank you Title19 medicaid...Daniel gets nursing care now) But I am blessed and grateful.

I don't know why I'm thinking about this...but never in my wildest dreams, when I had my babies...did I think I would be changing a diarrea diaper of a teenager.

It breaks my heart in a weird way.

Happy New Year 2011

Happy New Year. Its 2011. And here I sit...wondering how the year will play out this time around. Our holidays were very nice... and thankfully Daniel has remained healthy. I just have this feeling of disorganization in my brain..because there are so many things I have to manage. His school, his therapy, the progress of both...the equipment, the insurance, the medical issues... ALL THE DOCTORS APPOINTMENTS.... scheduling... And I ask myself daily....is he getting what he needs, could he be farther along... am I doing the best I can for him?

But you know... its so difficult....this boy relies on me for his every bit of life. But I am also a wife and a mother to my husband and other children. I am many things to many people.

And I feel pressure... so I put it out there to my faith in Jesus and hope the universe will continue to help us along. I am on so many medications...for depression, for fibromyalgia, for pain, for my thyroid.. all of my conditions are attributed to stress, sleep deprivation, and depression.

Its a pretty dark place sometimes....but I have to find coping strategies.

New Years resolutions????? hmmmm To be more organized. To find a way to make more money in order to pay our debts and bills....and keep life going. To be a better cook. To find some crazy little time for myself. To see Daniel walking more and doing more. To lose 40 pounds and regain my love of exercise as opposed to hiding in bed with my computer.

I have more....those are the start. But as I write this, I recall that Daniel (age 13 now) had a slight fever last night...I hope he wakes without one. I never know from one minute to the next what will be in store for my day. Do you live a life like that? Its very hard.

And other things here in this house are hard on me....but I can never give up.....

So happy New Year. But not happy pile of old bills and pressures. We bought two quick picks yesterday..lottery is up to 290 million. I would settle for about $100,000...or even just $5000. I just know that something has to change and I need to figure out what.

But one thing remains constant. I am the Mom of a boy with Polymicrogyria....he is a concern and worry every second of my day. and I can never become complacent.

Happy New Year. 2011. I think I need a pill for anxiety.