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.

September's favorite fan on the sidelines 2012

This weekend I wasn't feeling well... as has been the case for a while, but I don't worry my family. So I needed much rest and naps.  Luckily I was able to do that.

I was recently reminding myself how much I love angels...

I believe these wonderful spiritual beings are real and are with us... I also have a nice little belief that whenever Daniel is looking at ceilings and the sky and smiling with bright eyes he is seeing an angel that we can not see.  Ever since he was just an infant he would follow something invisible above him that I could not see.















Today was one of those days when I could see angels in the clouds everywhere I looked.  Most people think I am strange for seeing angels in the clouds but I do.  I really do.  Its a wonderful thing to look for....

We took Daniel to see Thomas's football game in Danbury today, and Mom and Pop came over to watch too.  It was a lovely breezy sunny fall day...  and they won the game too.

Daniel enjoys going to the football games.  There was a day when watching other boys play and run freely used to break my heart in half.  I suppose it still does...  it always will...  but Daniel enjoys being outside in the action.  Listening to the sounds, the whistles, the cheerleaders, and of course watching the sky.

I ask you... if you are reading this... to imagine yourself not being able to speak, or express yourself, not being able to walk or move yourself at all.  But your eyes are remarkably acute...  you would be like Daniel...soaking up his world in other ways.

Daniel is a great fan of everything his brother and sister do.  He has no "thing" of his own.  Understanding and accepting that for Daniel and kids like him...there will be no football, baseball, 8th grade dance, plays, proms, sweet 16 parties...    He has no "friends" and he lives a very isolated world aside from the kids he sees in school and his family.  And church too, Walnut Hill community Church..when we get there (FOOTBALL)

I am blessed with this child... and his magic...but he will sit on the sidelines watching quietly as others achieve glory.  And after awhile... you usually catch him staring up into the sky or the trees or at the ceiling...  watching and maybe speaking with his own angel.   Someday my son Daniel, you will run and play and laugh and shout!  God clearly had special things in mind when He made you.  I am the one who has to figure it all out and keep my sanity in check.

Watching from the sidelines....that kid in the orange wheel chair with a tube attached to him and a nurse and Mom by his side....

Stomach Bleeds and Broken Wheelchairs... gotta love this life

On Thursday, September 13, 2012 I woke up at 5:45am to do my normal morning routine.  That consists of helping Sarah get ready for school..  she either drives in to practice driving or gets her bus.  Then I come back in and get Thomas set for his bus at 7:30.  Daniel is next. His nurse arrives around 7 ish, and the two of us work on the somewhat arduous process of preparing Daniel for school.

When doing his medicines, which all go in via his g tube... we notice a thick black liquid backflowing out of the tube.  So we vented it some more...and the entire exterior tubing filled up.  I filled a half of a large glass...with blood.  Some of it reddish, some black like coffee.   Never having seen this before..I OF COURSE call the Gastroenterologist we use at Connecticut Children's Hospital...  and his nurse called us back.  Very nonchalant... almost like I was bothering  them...they told me they were calling in a script for Carafate...  a medicine used for ulcers that works like an internal bandaid.  And thats it.  I was left very unsettled, very upset, and I still do not know what could have resulted in this amount of blood in his stomach so randomnly.  So the "Julie in me" will be pursuing an endoscopy or some kind of resolution to actually check his stomach and make sure there is not something wrong.   I am still worried sick about it.


What a gorgeous day today is...its Saturday...a gentle breeze, kind of cool, blue sky...  but just a little while ago the handle on Daniel's wheel chair was broken.  By accident, as our nurse attempted to tilt it, which it is supposed to do easily but Daniel's chair does not work easily.  So the pressure on the handle cracked it on both sides.  Now if I push it or even touch it...that handle is going to come right off.

So much for a nice walk with Daniel today.

It is a never ending rainstorm of concerns and problems.  And although everyone has things that happen everyday, for a person who is medically fragile and not able to walk...  these kinds of issues are magnified ten fold.

I feel like crying but yet...I have learned to just take a deep breath.  Because the next emergency or major issue is ALWAYS right around the corner.   I learned many years ago that my biggest enemy, sadly, is any kind of complacency.

So now what do I do???   I only have one wheel chair that is custom made for Daniel's body and his scoliosis.

I am just staring at this chair...trying to figure out what will work.  Maybe I'll try duct tape...but I doubt it will be strong enough.

That's enough for today.

The Daniel Touch

Daniel does this thing, where you go up to him in his wheelchair or his bed...and he looks at you so intently and then reaches with his left hand, extending a finger and touches your face.  It almost reminds me of a blind person, feeling someone face for a perception mentally of what they look like.   Daniel's world is limited, so via vision and touch he needs to be connected.

Sometimes, like just now, he will grab hold of my hand with both of his hands and hold on tight.  That is a really cool feeling.  I love that.

If you have ever known someone who can not speak, or see, or walk, or hear, etc...  you are given an amazing opportunity to see God work miracles that bypass what we are all blessed with...   For example, He gives my son the ability to touch and feel, to laugh and see, to express pain, joy, and sometimes even fear.  Those are his tools...  that God has given him...and the gift is really being able to watch him collect and absorb the world in a different way than everyone else.  Its really beautiful, really simple, and really a miracle.

Maybe people who have normal healthy children would read this, and a funny quizzical look would come across their face. "I'm glad that's not me, whew"    Well, my children are perfect, and I am totally blessed by God to NOT have a special needs child to cope with.   Who knows.   But...  if you are like me...the most annoying phrase I hear frequently is "God only gives you what you can handle"....  that puts me in a different "category" than the rest of the mothers???     They can say that phrase, look from a distance, and relax in the fact that a larger amount of the stress of life was given to Julie..because gosh, she must be strong and I must be a weaker person because I have been given less problems.

Well...   I certainly can see how easy it is for people to raise me on a pedestal like I am a hero or something. But that doesn't make it any easier.  I have tremendous pain, and pressure, and fear...  I don't WANT to have to handle this...but I have to do, what is necessary.

Yes... God gave me a miracle that is Daniel.  But along with a medically fragile child comes the long list: doctors, medicines, seizures, choking, respiratory frailty, pulmonary oxygen levels, changing diapers and more diapers, tons of laundry, transportation, education, integration, advocacy, financial hardship, and I could probably write an entire blog on what comes along with a special needs child.    So WOW...I should feel like a SUPER person because I have been given what I can handle?   Honest to God..who can possibly handle all of this.  I'm just trying to survive.   So I can really take moments to enjoy the beauty that is my child.

I don't want a million dollars, or a luxury car, or trips to the SPA,or designer handbags, or a luxury home...  All I wish for is blessings of security, peace from financial pressure, God's presence in my life, Sarah and Thomas to be able to go to college, food in my fridge, cars that don't have engine lights one...  just a basic life....   Because, that would relieve the tension in the cables that bind me, and keep me from truly doing the best that I can to help Daniel.  More therapies are out there that he could have, he could swim more, and do more...  But I simply can't get to everything...  Newsflash...Julie can not handle all that God has given her.  I just try to keep my perspective.

Yesterday...  I posted on Facebook my need for bible reference to help me deal with my issues.  I have some amazing Christian female friends, mostly all Mom's who shared with me their favorites...and I was so touched to see that God uses us to remember Him and stay connected spiritually.

Here they are....  ready??

• Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
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• And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil. 4:6,7)
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•  i find that praising Him (psalm 150:1-2, Isaiah 49:13) and focusing on His Truths and promises (Jeremiah 29:11, 1Cor 2:9, Matt 28:20, Phil 1:6, Is 26:3-4, Romans 8:28, Heb 13:5-6) divert my anxious heart. also lamentations 3:22, joshua 1:9 (a fav in our house!), 2thess 3:16, Matt 11:28, John 14:27, hebrews 10:23-24, Phil 4:8, nahum 1:7.....and a huge FAV (joel's benediction that always makes me cry) Numbers 6:24-26! be encouraged, sister!!!
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• Isaiah 40:31
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• add one more VERY important one!!! this is the one i was looking for and i know it brought a VERY dear friend of mine much comfort through great difficulty: Zephaniah 3:17: The Lord your God is with you, He is mighty to save. He will take great delight in you. He will quiet you with His love , He will rejoice over you with singing. AMEN!!!
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• Jeremiah 29:11 For I know the plans I have for you, plans for your welfare and not calamity to give you a future and a hope!
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• Hebrews 13:6, "We can confidently say, 'The Lord is my helper, I will not be afraid; what can man do to me?'" Prayers!
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• Praying for you Julie! Philippians 4:4-8 "Rejoice in the Lord always! I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything but in everything by prayer and petion, with thanksgiving, present your requests to God. And the peace of God, which transends all understanding, will guard your hearts and minds in Christ Jesus. Finally brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things."
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• Google serenity prayer, the long version is very helpful to me.
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• Julie, remember to breath. Just close your eyes and breath. I believe you know everything you need to know. People care about you and your family and you are surrounded with love. What you need will come from within.
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A very wise person told me once to lay my requests out to God, and have faith that we will receive.  To be calm...   and all of these comments above taken from facebook yesterday, all speak to that truth.  I found peace while going through my bible and marking each one, and reading each one.

And today, when I went into Daniel's room, he instantly reached out to touch me, with very intent eyes looking right into my eyes.  And without fear, stress, anxiety, negativity, etc.  I was able to receive his message loud and clear.  And I was able to return it.

All children are blessings...  but compromised, disabled children need us to help them display their gifts and give their talents to us.

"The Daniel Touch"....   is just one of those things.  

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...