The "Julie" episodes

I've been a special needs Mom for 16 years and 6 months.  Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed.  My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.

But here's the "thing".  I am only human.  I also have two other "normal" children, Sarah and Thomas.  Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball....    And as they age and grow I proud just like other parents.   The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent.  My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness.  It happens quite randomly.  I can't control it.  It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent".  But I'm not.

On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students.  Thomas is ONLY going into 8th grade but he is allowed to participate.  He is so excited, of course, being the blossoming talented musician that he is.  And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid.  John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.  

And then, it happened.  The "thing".  Tears welled up in my eyes and my heart started to pound.  I can't stop the tears, so I have to let them pour.  I try to hide and slouch down, but my husband keeps whispering "whats wrong?  are you OK?"   I wave him away and say "just give me a second".  Because I am thinking of Daniel.  Daniel who will never march in a band, sing a song, play a cello, or write a story.  Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady.  Graduate, and go off to college where she is now thriving.   Daniel WOULD have been a senior next year.  He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.

I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing.  There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.

By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents.  These parents don't know about Daniel, most of them, so its nice to just be one of the crowd.  When I start showing up pushing the wheelchair, people treat me differently and the kids stare.  It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".

Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts.  I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form.  He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.

Yesterday was June 12, 2014.  One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system.  She is 21 and can no longer attend.  The school had a lovely ceremony and reception for her, her name is Emily.  It was a beautiful moment, profoundly happy and sad at the same time.  The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish.  9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly.  Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.

I must conclude with something that will change the depressing nature of this post.  The love in that graduation ceremony yesterday was something that you could feel in the air.  There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met.  It was a beautiful testimony to what these kids teach us, and show us.  It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds.  And her brave and dedicated family who have dealt with so many challenges.  

(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)

I have to have these episodes, its just in my nature.  It's just who I am.  And I never claim to be super woman who can endure this life with the strength of a giant.   I'm just Julie.  Failing and succeeding just like everyone else.  The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive.  That is a role I have gladly accepted, even with all of the sacrifices that it brings.  I am entitled to a good cry.  It cleanses out those feelings.

Thomas and some big brass, age 13 2014

Thomas is a budding musician
I often wondered what my youngest son would like to do as he started to find his passion.  Not surprisingly he has quite literally submerged himself into music.  I remember playing the flute at that age and it was the one thing that I was really good at.  It was also a place where I could lose myself in the music.

This is Thomas, as the video shows, he's pretty versatile.  This mother is very proud of her children, and especially happy that they have a love for creativity in music.  I am not kidding when I say that this summer Thomas will be playing his main instrument, Baritone Sax, but in addition learning trombone, bass clarinet, tuba, and baritone horn.  Sarah found her passion in strings, she's a viola player.  She also sings, and plays the key board and is learning guitar.

Sometimes on a nice day, if you are walking down the very wooded Bennetts Bridge Road, you may just hear the sounds of brass as Thomas practices outside.  He is a musician, smart, creative, and I love it.

Daniel watches his siblings, older and younger, and listens.  I am not sure precisely what type of music he likes the best, but he is fascinate by the different sights and sounds.  And sometimes, at a show, or a concert he will just find the ceiling vents and lights more interesting.

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.

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

Mommy's Pain

OK world. This is a real illness.  I was diagnosed many years ago, and it has been getting worse and worse with stress.  Making it hard to do anything.  My family thinks I'm lazy because suddenly during the day I need to lay down and sleep.  I can't help it...it feels as though someone pulls the plug on your energy.

I have pain on all 18 of the tender points...  the worse ones today are my shoulders, back and really bad pain on the back of my head behind my ears. My neck is swollen... and my entire body just aches like I have the flu...  almost constantly.

Caring for Daniel never stops...  but it hurts my body

It gets exhausting that so many people do not recognize that this exists...  they just tell me to exercise, lose weight, take vitamin D, and it will go away.  Those things help reduce the pain of symptoms...but Fibromyalgia is Chronic.   HAH!!!  even the spell checker does not recognize the word.

 Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

A TYPICAL Julie Chronic Fatigue Nap attack

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

The pain associated with fibromyalgiaoften is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

• Back of the head
• Between shoulder blades
• Top of shoulders
• Front sides of neck
• Upper chest
• Outer elbows
• Upper hips
• Sides of hips
• Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symp

Anyhow, I just felt like writing about the fact that each day of my life I wake up in pain.... I take Lyrica, Ultram, Effexor and Wellbutrin along with alot of advil...  and once it kicks in I can function.   Depression and feelings related to the stress of home often put me into a hopeless cycle of not exercising and getting tired.  But if I force myself to just walk...get fresh air...  I feel better.   I really know what helps....but I have to manage three children including Daniel.  

It is stressful even just trying to de stress the stress.   And a life of pain becomes a physical life of pain.  Makes you really wonder why sometimes.

Just keep going Julie..  Just keep going.

Random thoughts Starbucks inspired on a Friday night...

As I sit here, on September 7th...its Friday..  and across the street Thomas is playing football.  And across the table from me Sarah is doing her psychology homework drinking an iced tea...  and across town Daniel  is in his room with Marques (nurse) relaxing after a very long day.

Across my mind go a myriad of thoughts...every day.  Will I be able to survive the next storm?  What is emotional abuse anyways, and maybe my perceptions are skewed, although my inner me tells me...nope...you are screwed.   And what about all of the financial issues, making survival happen while taking care of Daniel.  Will I get what I need to send Sarah to college?  Why in the world does my face hurt under my eyes when I touch it?  So much pain...  so much ache...  fibromyalgia? or just insanity.  Nope, definitely fibromyalgia. Face? Probably chronic sinusitis.

Its all catching up with me...and once someone told me that I could not sustain my pace forever.  Well, I am going to die trying.

Raising Daniel has been a joy beyond words, trickled and sprinkled with bits of this and that.

Across town, Daniel is probably lying in his bed...with his body shaped like a letter C...or maybe an S because his spinal curve is getting worse. And worse. And worse.  And how fair is that for him?  He is the sweetest, most innocent guy ever..and he endures the worst of the worst.  But maybe it doesn't affect him when Daddy yells at Thomas and Sarah...because he doesn't get yelled at.  He is exempt...  because he is helpless.

Daniel has redirected my life, and that is not to say that I understand or even know which direction I am going in.  I am being steered into a foggy abyss...without a clue as to what each day is going to bring next.

Sitting here with Sarah in Starbucks, while Thomas practices football, while Sarah does her work, while Daniel is probably watching a movie at home...  just sitting here thinking how good this coffee is.  And how much I really don't want to be home right now.

So now I feel like going into my pictures....  lets see what I can find...and I'll post them here... in my randomness of thought...   Yes...I seriously feel like a mother gone insane.  I hope you enjoy the pictures...

It is a tough role that I face...that we face. Day by day...minute by minute...

Rolling Into Summer...Blog entry July 8, 2012

Summer...  July 8, 2012  My Blog for Today.....

Today is Sunday, July 8, 2012.  It's been a hot summer so far...pretty much everywhere I imagine. We were blessed to have the chance to escape to Cape Cod (South Yarmouth) where we stayed at the Red Jacket Resort.  I chose that place, even though it was ALOT out of my budget because it had wheelchair accessibility, close to the ocean, and enough room to care for Daniel while also providing a nice place for Sarah and Thomas.


Thankfully, we returned on June 30 healthy and without any "events" such as vomitting, seizures, fevers, or periods of handbiting and crying.

Daniel resting after a good swim with Mom and Dad

Now comes the task of dealing with real life again for the rest of the summer.  Who doesn't like escaping "real life" for a while.  Real life is the equivalent of worries about Daniel's scoliosis which is worsening, worries about his bones which are demineralized, worries about where the road is taking us next with him.  He had tests done this week, and saw his gastroenterologist...and we are waiting for tests results which will go to the surgeon and the endocrinology team (bone doctors!) for some direction as to our next step.


Yesterday, Daniel cried ALOT and was hand biting.  Looks of pain periodically on his face, and if it trends, I will have to do my due diligence to find out how to help him.

Enjoyed so much the ocean breeze on his face while we took walks. Priceless smiles.

Real life is coping with a house that is falling apart, cars that are on the brink of failure,  a fat folder full of issues to resolve/research/study/call about, continue job searching (which has been SO FRUSTRATING), and pray that somehow some miracle will happen that will put us in a better place financially.  Isn't that always real life.  For so many people....  I know.   But the hard part is raising this child who has so many medical risks and medical problems...and also try to care for Thomas and Sarah.  OH MY GOD...Sarah is going to college next year.

Thomas, Daniel and Sarah

I wake up in anxiety, pray for faith and calm...  and go through my daily routine.    


Back in June I went for an interview at Danbury hospital!  It was GREAT.... for a Patient Access Liaison.... part time.  I had a very good interview, passed all the computer tests, and was told I would have a second interview the first week of July.  I thought, finally...  something to be flexible around the nursing schedule that pays well...  WELL...  that died when I got the canned rejection letter via email on July 3.   Ugh.   I have so many qualifications, an MBA, years of excellent work experience...  but yet everything I attempt hits a wall.  So I have a ten second funeral, and keep on trying.  


All the while, always worrying about Daniel...always managing his medical needs, always worrying about the bills, and daily having that prayer and self talk about BE POSITIVE JULIE, FIND A PLACE WHERE FAITH COMES FIRST, TRUST IN THE LORD.    And...it works, I feel better, and I keep on going going going.

Watching his brother ride a go Kart...probably wishing he could ride too

I know in my heart, somehow, that a miracle will somehow happen.  Someday.  Perhaps it will be a breakthrough in health for Daniel, or perhaps it will be a good job offer for me, or perhaps it will be a wonderful financial gain to support us as we deal with this challenge.  


Like a track and field athlete, we just keep hurdling, vaulting, and continuing to run the marathon. Wondering when the time for rest will finally come.  Believing that all of this is happening for a reason.    Believing, praying, focusing and living with so many unmet needs.

He watches and studies everything around him.  He can not speak, but he uses his eyes to learn about his world.

You can clearly see the leaning from the Scoliosis in this picture. This becomes painful for him.

Getting upset... needed diaper change!

Exhausted, He snuggles in his favorite position...

What really matters most at the end of the day????