I'm still here. Critical thoughts. And most recent video link. Please read

Once upon a time, life was easier?  Probably not.  but let me tell you, as a Mother... I will never give up on my children.

We are currently raising money, because the state is reducing Daniel's benefits, and our home needs ALOT of mold removed, especially with a fragile child.    Daniel is 18 now.   Over the years, more and more people have simply slipped away.  Family???   We can't see them because travel is hard on us, and accomodations are complicated.   Holidays?  We can't plan them, because 99% of the time something happens which can alter plans.  Special Events?  We don't even get invited anymore, I think most people assume we are just aloof and disconnected.    Church?  We have a wonderful church group, but they don't even know us anymore, because getting Daniel to church is a challenge and I am trying so hard to get "better" too.  So I pray and watch sermons on my own.  Friends?  Youtube, Facebook, and a few local people connected to Thomas's events.  Thats basically the extent of people who reach out.    Most people we were friends with, when our kids were young, are gone.  BECAUSE our kids are growing up, Sarah is almost finishing college.  Thomas is in highschool.   Everything with him is music related, which is lovely.    But I spend all of my time with my husband and by myself.

And with Daniel, of course.   Nurses?  wonderful human beings who fill a void in my life and also care for my son.

Most people have children, and as they reach this point in life, the kids are grown, and retirement is in sight.  Vacations, hobbies, having "fun" together....    We will not have that.   It does not mean we don't love, and care, and laugh and share.    TO SEE DANIEL SWIM IN THE GULF OF MEXICO was the biggest blessing and joy of my heart last year.    Now that he is 18, more and more is being taken away.   We work harder, and get less, work even harder....  get EVEN less.

But he is 18 years old now....  and that in itself is a miracle.  He is a miracle, most people clearly don't have time to even think about him, or me, or us..  because OF COURSE we all have such busy lives.  Everyone has their own bubble.      So most "normal people" or people who have no financial limitations, or people who have normal healthy kids....  just don't know the kind of pressure bubble we live in.    And most families with special needs and medicall fragile kids live in.   Over the course of 18 years I have watched a community of love and support, programs and funds and fun groups and friends....  simply disappear, or tell me, sorry he is too old to apply.  

I have worked my brain into oblivion, trying to keep the house, work through bills, get things fixed, put kids into college, pay for things that would make most people go "HOLY SHIT THAT COSTS THAT MUCH??"  and answer, yes, because its for a special needs person.

And I try to be a mother, friend, daughter, supporter, cook, cleaner, and put income back into the house.    All the while, ALWAYS scared inside my conscious that my son will die.  Always afraid of the next phone call that will send me panicking.  Knowing that I have two choices, fight or die.  Its honestly that simple.  I have to fight.  Am I tired, yes, I am very very very tired.  Will I ever stop? No. Never, unless I die.  No one else is going to give my son help that he needs, I have to push and push and push.   And we are not talking millions here.  Just basic life necessities.

And after 18 years, when asking for help from people who can help  feels like crap, because people really don't want to help, and you have become a nuisance.  Or, they assume you are careless, uncivil, not acting like a responsible adult, or just screwing things up.  And you start to question and doubt yourself even more.    You are not their responsibility ultimately, after 18 years how could Julie and and John possibly not have everything all "together"? Your husband works really hard, but feels like a complete failure even having to think about asking for help.  (and your job is to build up his confidence too).      And failing someone else, making someone else feel bad, is just added to the guilt pile.  No matter how many times you say thank you,   And makes you FEAR asking for help, because you know you failed them by not showing enough gratitude in the right way, and at a right time...  and you feel SO BAD about it.  For months and months and months...because you really are GRATEFUL, and really do love them for helping.    And it gets complicated, and makes you feel so sad.  REALLY sad.     And honestly, truly, you really just needed help.     I hear this type of emotion from alot of financially needy families trying to care for a sick loved one.   When everything is exhausted, when you can't get a loan, when you have had so many tag sales that you live a minimalistic life, when your credit sucks no matter how you try, when the only entertainment you have is a drive to the dump and cup of coffee with your husband....      You just have to ....  what.... give up?  

Can't give up Julie and John.  Because the state just took away therapy.  The Attorney just sent you a big bill (the state was supposed to pay it) but now they are charging YOU for guardianship... no one told us that.  Giving up is never an option.   And we are not careless, immature, stupid people.  We are NOT perfect, but we are two humans who love eachother, love their kids, and love having happiness.    Anyhow...

 When the real truth is, you are simply trying to make it through each day keeping a child alive and smiling.  

The fact that we still have a house, and live in a lovely community, with wonderful schools, and can survive in the state of Connecticut....  for the sake of our typical kids, is wonderful.    Do we have savings? no.  Do we have retirement plans? absolutely none.  Do we see beyond next week, pretty close to impossible with this kind of pressure.   One little vest machine, $15,000.  Monthly medical out of pocket costs? varies from $500 to $5,000.  Lawyer bill to become our own child's guardian?? $800.  Repairs to a 2004 lift van that is literally starting to fall apart?  just to fix the lift? $2000   Mortgage, insurance, taxes, electric bill, phone bill, oil bill, home repairs, food, gas, car payment, medical expenses for Julie....    you know...  we have the normal stuff.    Should John's salary be enough to cover it? Yes.  it would.  But then, you have to LUMP all of the Daniel expenses and liabilities....  and we sink to the bottom of the ocean like a brick.  

So each month....  we just wiggle and jiggle and get through.

Sometimes, just sometimes, I wish someone would realize that I am not a perfect human, and I just want to have joy on this journey while we are actually on this journey.  Lonliness was never a part of the plan for me.  But sometimes, being alone is better, because it hurts to much to be with people who have zero compassion for the struggle that is "real".    Surround yourself with love, and if that love comes through the computer, then fine.  Thats cool.  One day, someone left a potted flower on my door step, that was better than anything I could have received that day.  Because it told me that someone, somewhere.... cared.  And that I wasn't actually as alone as I thought.

It is now May 5, 2016.  I am trying to raise 18,000 so that I can remove the mold from our house.  I just successfully completed a "bank modification" of our mortgage which took almost a YEAR! And just getting that completed was huge.   Our bankruptcy from 2009 has dropped from our record.  That is such a relief, we had such a struggle.

So one family, one hard working husband, one crazy dedicated Mom, and three amazing children.  Living in a bubble, that is always on the verge of popping.   Someday soon I could have a stroke, or get sicker, because staying healthy has been a ridiculous challenge.  But people say "do things for yourself"   Bah ha ha ha ha ha ha .  When?  When might that be?  The only thing I do for myself is my You Tube channel, and write.   The rest is for them, I love them. I just want to smile alittle more.  Is that so much to ask.   Making sure Sarah and Thomas have JOY in their lives, and education that will help them...  is so important.

Do you really have any idea how hard it is to raise and care for a child/now man who will never speak a word to you?   Who walks the line of medical fragility beyond which you have any control?  Who you love and adore, whose morning smiles can make all the pain disappear?

Do you really know how mentally and physically and emotionally exhausting it is for special needs parents?   Maybe you are one, and you are reading this and nodding.   Maybe you don't care.   Maybe you are too practical and don't understand me.   I don't know.   I just want the world to know a few things....

I AM GRATEFUL.  FOR ALL HELP.  FOR ALL LOVE.  FOR LIFE.  FOR THE SIMPLE THINGS.  SOMETIMES I MAY NOT SHOW IT, BUT ITS USUALLY BECAUSE LIFE CONSUMES MY THOUGHTS.    JOHN AND I ARE VERY VERY VERY VERY VERY GRATEFUL.  HE FEELS LIKE A FAILURE AND FEELS DEPRESSED, ALOT BECAUSE OF HIS PRIDE AND WANTING TO DO IT ALL.   I AM CONSTANTLY TRYING TO GET HIM TO OPEN HIS HEART AND TRY NOT TO BEAT HIMSELF UP.   WHEN WE DO ASK FOR HELP, HE OFTEN GOES INTO DEPRESSION.

I HAVE DEPRESSION, A VERY BAD SITUATION. BEEN GETTING HELP FOR YEARS.  ITS LED INTO COMPLEX PHYSICAL PROBLEMS BUT I DEAL WITH IT.  HAVE NOT SLEPT MORE THAN 3-4 HOURS A NIGHT IN WHAT, 10 YEARS?  WHO KNOWS.

I LOVE MY FAMILY MORE THAN BREATHING AIR.

I NEVER PLANNED ON HAVING A CHILD THAT WOULD BE SUCH A BURDEN TO SOCIETY, FAMILY, FINANCES, AND SCHOOL ETC.   HE IS YOUR BURDEN APPARENTLY, BUT TO ME, HE IS MY CHILD.     HOW DO YOU THINK I FEEL, INSIDE MY CONSCIOUS, THAT IF I HAD NOT CONTRACTED THIS STUPID CMV VIRUS, DANIEL WOULD HAVE BEEN BORN A NORMAL PERSON.   ULTIMATELY IT IS MY FAULT.  EVEN THOUGH I HAD NO CONTROL. THIS IS THE FIRST TIME I HAVE WRITTEN THIS DOWN.

I AM HERE.  STILL HERE.  IN MY HOUSE.  CRYING ALOT. LAUGHING ALOT. HURTING LIKE CRAZY FROM MY STUPID PHYICAL EXHAUSTION.  STILL DREAMING OF BEING ON A WARM BEACH AND FEELING SORRY MYSELF, BECAUSE SOMETIMES I DO.  I ADMIT.  I FEEL BAD FOR MYSELF THAT I CAN'T HAVE YOUR VACATIONS AND LUXURIES, EVEN FOR A COUPLE OF DAYS.  I AM STILL HERE, TRYING TO ROB PETER TO PAY PAUL TO FIGURE OUT HOW TO FIX MY HOUSE SO THAT IT STAYS A HEALTHY ENVIRONMENT.

I WAKE UP EACH DAY, GIVING MYSELF THE "BE HAPPY" MANTRA.  AND PICK UP MY CAMERA AND VLOG, BECAUSE IT HELPS ME FEEL LIKE I HAVE A PURPOSE.

I AM TURNING 50 IN JULY.  I AM A MOM.  A WIFE. A FRIEND. A HUMAN BEING.

And is just wanting to keep your sick child alive, such a bad thing?  Where has everyone gone?

Oh.  And my dog Henry.  He is my best friend.   And sincerely, thank you, to those who have helped and cared over the years.



Julie Hasselberger

Isolation

Isolation

People exist around you.  Things are happening all of the time. But why do you feel alone?

In groups you pull yourself apart, feeling like you don't fit in.  Having that awkward silence.

In places where people are happy you find yourself wanting to run away, and yet at the same time you don't WANT to be alone, really..

Watching their "normal" kids playing and demonstrating second by second the normal human motor skills that people don't even think about.  Until their child doesn't have them.

Suppressing that self-pity day after day because it isn't about "you" really.  Feeling tired and lost, and then even more tired.  Losing the social skills that used to make you vibrant and shiny.

Developing new ways of life when you are unable to work in the career you spend 8 years going to college for.  Battling insurance companies, changing diapers (LARGE diapers), whiping drool, ordering supplies, cleaning up g tube leaks,  taking vital signs, calling doctors, watching for seizures, and knowing when a vest treatment is needed.

Knowing what it is like to sleep in a hospital for weeks at a time.  The mind becoming accustomed and comfortable.

Balancing the schedule of SO MANY doctors appointments, therapy appointments, and school. Learning to always plan on things being cancelled, rescheduled, changed every day.  All the time. No consistency and no planning because it almost never works out the way the plan goes.

Digging vigorously into social media for friends.  Because you can't go out, and even if you do.  It's the old awkward, not knowing what to say and worrying about the child at home.  9 times out of 10 something goes wrong at home.

Loving your child so much, as you watch life and milestones that everyone elses children get, just pass him by like a breeze at the shore.  Walking, talking, playing, writing, singing, dancing, having friends, graduating, going to college, etc etc etc.   Your child lives with you.  And your reality is suddenly, he is nearly 18 and you have to  do all kinds of legal crap to assign yourself his guardian. As ridiculous as it sounds, its the law.  And its money you don't have. Again.

The pressure of not knowing what to do.  Having to learn, every day, what to do to keep him healthy, happy, engaged.  It's your responsibility to provide him with all of his life's activities.  Thats a big responsibility.

Money and finances.  Waiting patiently (7 months???) and counting.  For the bank to modify your mortgage.  Every week they tell you, we have alot of modifications and we are behind.  And you wait, and worry.  They said months ago they could help bring the payments down.  Now they just leave you hanging on a limb.  And you just want to care for your family.  You just want to be a responsible person.

The isolation from all things normal.  The restrictive world that having a wheelchair causes.  The expensive crazy cost of all things "special needs", marked up.  Fighting the insurance company when they decline paying for anything.

Not sleeping.  Over eating.  Turning to sweets for comfort. Taking too many naps.

Trying to find yourself, giving up.  They trying agian. Then putting "you" on hold.  Confusion, loss of self, and disruptive sleep.  Nightmares.

They tell you so many things.  But they can go home to their houses, and not have to live with the enormity of it all.  Secretly they are glad they are not you.   You feel special, because you have this beautiful child, full of wonder, and just an amazement every moment.  And then you feel guilty for the self pity.  Feeling awkward when people help you, and then feeling like you just have to ask for help to survive.

Its a blend of loving yourself, and not knowing yourself.  Wondering what the future will hold for your family and your special needs child as everyone crosses over into adulthood.  It was easier with little children.  Getting older means more.  After 21 he has no more school, so then what are you going to do.  Not knowing.  Because you live in the moment.

Giving your other children as much of you as you can.  Realizing that they too, have isolation tendencies, and extreme creative talents.  Special needs siblings with an enormous compassion and the ability to see the world from both perspectives.  Keeping your marriage together when at times you feel like you just want to run.

Being a good person.  Praying often.  Wanting to go to church but not able to sleep enough to get up. Looking in the mirror every morning, wondering what the day will look like.  Wanting to sit on a bench and just write stories and poems.  Wanting to garden.  Wanting to play your music. Wanting to get to YOGA class.  But passing up on all of your favorite things.  Because you are a busy Mom.

There is an isolation that happens when your child isn't like the rest.  It is neither good nor bad. It just is.  It's hard to explain. The feeling.  The way it feels to push that wheelchair everywhere.  But it is who you are in this life.   Only one life.  Passing by quickly as your age escalates.

You are only given what you can handle.  You are strong.  You are special. You are amazing.  But really you are just you, who was forced due to circumstances to alter your reality and have faith.  Faith and hope keep your head held high on the journey.  To the unknown.

Julie Hasselberger
August 1, 2015

I am Julie Hasselberger.

They asked me for a "bio" and this is what I wrote.  Today is Thursday, May 21, 2015  

I am Julie Hasselberger. Mom of three children living in Sandy Hook, CT. I have a Bachelors degree in political science and an MBA with a concentration in Human Resource Management. In 2003 I left the full time corporate career world because my severely disabled child needed my attention, advocacy and care full time. I am outgoing, I love people, love music, and love God. I am a Christian and I believe that we have Hope through our saviour. Needless to say, my life is a daily struggle full of challenges that can be very overwhelming. I am always trying to get healthier, and that too is a tough battle as Daniel is just getting bigger. I love my children, Sarah, Daniel, and Thomas more than anything in this world. I have been married for 22 years to John Hasselberger, and marriage has its challenges dealing with differences in opinion and different personality issues. I've dealt with severe depression and anxiety for years, and I a true believer in "choosing happiness" NO MATTER HOW HARD.

I started vlogging regularly about a year ago to share my journey and my story. Its been a wonderful experience. My vlog is my main source of enjoyment these days, because I am capturing the daily life of my crazy family.

Life as a Mom to a severely disabled child is very isolating and lonely. You feel disconnected and on another planet all together. I cry ALOT but I laugh more.

I love to make friends... and its funny how I basically spend actual time with, none. But I have found so many friends who want to be there for me in the You Tube community and through my Special Needs support groups.

In life you never know what to expect. What matters most is love. It can be challenging when people who are closest to you dont "get you".... and the bills certainly have NO MERCY for people caring for disabled children in their own homes, giving up their lives for their children. Welcome to America.

Life is beautiful. Despite all of the negative people around us, the negative world we live in, we can choose to grab each moment and value it and love it. Live for now. Because the reality is truly this, all we have is what is now. The rest either is in the past, or in the future. One is gone, and the other is unknown. Love eachother now. Right now.

To Baclofen pump or not to Baclofen pump, that is the question

Yesterday Daniel saw Dr. Cruz-Zeno, who is a pediatric physiatrist.  He specializes in rehabilitation medicine, and he is one of the doctors on Daniel's team who has been seeing him for his entire life, since he was about 6 months old.

Daniel has been through so much, and his current amount of muscle spasticity is, and has been for awhile, a big concern.  He takes a medication called Baclofen, which helps to manage the spasticity, or tightness, of the muscles.  Unfortuneately Daniel still has periods of time when he goes into these complete and total spastic "fits" I guess I could say, for lack of a better word.

These are Yo Gi Bo Pillows.  We would love them for Daniel at home.

The Baclofen activates directly at the spinal chord level.  So the oral baclofen that he takes, takes a while to be ingested, and get to where it needs to get to.  There is another way.  It is call "Intrathecal Baclofen administration"  And essentially, they surgically place a pump into his body, which will administrer the medicine directly into the spine.  Its a more effective way of controlling the tone problems.

Daniel with his buddy and therapist Adam

Daniel's spinal surgeon has given me the name of a Neurosurgeon at Yale New Haven Children's Hospital.  So I will be calling for a consultation.  They can actually do a test run to see if this method is appropriate for Daniel..  Because of the amount and placement of Daniel's spinal fusion hardware in his back, it may be extremely difficult, if not impossible to place a baclofen pump into Daniels body.  But it's worth a shot to look into.

I have been procrastinating in my mind with this Baclofen issue for about 6 months.  But, as we were getting ready to leave the doctors office yesterday, Daniel went into the most extreme demonstration of high tone and spasticity that I have seen in a long time.  So the doctor got to witness it.  It took his nurse and I a long time to even get him back into his wheelchair.

This process is long and complicated...  this process called managing Daniel's medical care.  I'm exhausted right now, and have too many things to process.  Somehow I need to find a method for organizing myself in a better fashion towards goal attainment.  I don't have a literal second in my day, for myself.

This time I am spending, right now, on this blog is my one hour between when Daniel goes to school and I have to go to the next thing on my schedule.  I would really just LOVE to relax for a couple of hours and watch you tube, make videos, and manage my planner.  I need a better planner.

This is me and how I feel every day

So who knows what tomorrow will hold?  I don't even know what the next hour will hold.  All I really know right now my friends, is that I need another cup of coffee.  And an appointment with my psychotherapist before I mentally go wonky.

Peace and love until next time!!!   Please come to our You Tube channel, "Julie Hasselberger"

https://youtu.be/hunnIPWj1Eo

When Daniel turned 17 years old.....

On November 22, 2014 my son Daniel turned 17 years old.  Unlike most kids, having a birthday for Daniel has always been a challenge for me.  He doesn't eat via mouth, so food is not logical.  Gifts? Well we can get him things he needs, but he isn't really cognizant of what he needs.  We sing to him, he likes that.  We give him balloons, he loves balloons.  It's not typical.

Daniel is not able to speak.  But we know he loves to watch and look at everything.  The mall, in our case, the Danbury Mall in Danbury CT is his favorite spot to just take in the sensations, sights, sounds, smells, etc.  He goes into this really happy state when we take him into the mall.

So on his birthday my husband John, son Thomas, Daniel and I walked around in the mall.  We ran some errands, had some food, but the main purpose was for Daniel to enjoy being at the mall.

Last year, when he turned 16, he received over 800 cards from all over the world as a part of a "card shower" that we had started.  It then turned into gifts, and visits from many people who just wanted him to know that they loved him.  It was honestly, one of the most amazing things I have ever experienced, the opening of the mailbox daily to see piles of cards and pictures.  Wonderful.  This year we didn't do a card shower, I really just have been so incredibly busy and overwhelmed.

And Daniel received two cards, one from his grandparents, and one from his Best Buddy, Ryan Williams, who we have recently become friends with through the best Buddies program at Newtown High school.  Ryan also brought Daniel a Newtown Marching Band and Guard sweatshirt so he could wear it when he goes to watch Thomas.  That was really sweet, Ryan and his Mom visited for a while, and it was a nice visit.  He's a great kid.

Special needs children like Daniel, do not have the ability to ask for anything,  They can't make a list, and stress out your financial capabilities.  Daniel is sweet, and quiet.  He asks for absolutely nothing but finds joy in being with people.  Sometimes, he doesn't react and it seems as if he is just staring off into space looking at the ceiling.  Well, he probably is, but he is most definitely aware of the fact that people are with him.

And there is the mother guilt.  "I didn't do enough for him", "I should have done more for him"!!!

After all, the fact that he has been alive and with us for 17 years far outweighs the odds they set for him when he was a baby.  He is a miracle.  He is a great teacher of many many lessons.  He receives love so willingly and looks at you with eyes that are deep and probing and gentle.

My life is completely dedicated to Daniel.  Yes... don't get that wrong... Yes I am dedicated to my entire family, however, they have abilities and independence.  Daniel however, needs someone to be his everything.  To arrange everything.  To monitor, everything.  To manage everything.  That's me.  Julie Hasselberger.  I am Daniel's Mom.

Did I do enough for his birthday by surrounding him with balloons and taking him to the mall?  I don't know.  I don't know what "enough" is for Daniel.  I just know that I love him so very much.
So what, it was quiet.  We heard from Glen Schallman, with a lovely "Happy Birthday" song, and from the teachers and kids at school, who also said Happy birthday in a video.  His best buddy visited.  And on face book probably a hundred Happy Birthday Daniel wishes, but he can't read, so I have to read them to him.

He is 17 years old.  For me...  its incredible and I want to shout it out loud to the world.  But it seems as though over time, as special needs children get older, the world just isn't listening anymore.  The world has grown weary of helping, hearing, caring, being there.

THAT is why Daniel has me.  I will never stop being his completely devoted Mommy.  Everything else takes a back seat.  He matters the most.  And my role of Mommy to Daniel, AND Sarah, AND Thomas, continues to remain the focus of my life.  I wouldn't choose anything else.

Special needs children rarely have friends.  When they have a birthday, it seems as though each year people care less and less.  It was so quiet on November 22, 2014.  But, Daniel turned 17.  And he smiled alot.  He knows we love him.

Life is just that way.

Watch this video from our you tube channel, "Julie Hasselberger"  Daniel...goes to the bone doctor, every day is a new adventure.

Coffee in my favorite Florida chair

In a white soft leather recliner, that swivels 360 degrees, I'm sitting with my feet up looking out a window at Florida.   Daniel is sleeping in a crazy but happy position in the bed I just got up from. When we travel one of the biggest challenges is where do you put a 16 year old disabled child to sleep.  Gone are the the days of bed rails and  pack and plays.  Usually he sleeps right up next to me.  Because he wants to cuddle up and be close.  Daddy is on a trundle bed at the other side of the room. It's like a camp.  The other kids get to have their own rooms and that's ok.  They are getting older now and need their privacy.

 It never ceases to put a numbing surreal feeling in my brain when I try to envision my future.  It includes the three of us, in this camp, or some other camp, so that I can take care of Daniel.  A far cry from the happy retirees I see down here in Florida enjoying their grandchildren, or just strolling hand in hand down the beach.   Our nest will always include the one baby bird who has no wings.

Florida has become, to me, a place of obsession.  I love the weather, the air, the water, the people.  Handicap spots are plentiful, and people are patient.  Beaches now offer beach wheelchairs, so Daniel can go take a walk down the beach, or just get right up to the warm water of the Gulf of Mexico.  The roads are lined with palm trees and the homes are very solid structures full of ceiling fans, tile, and Florida flare.  Sarah and I walked down to the beach with Daniel last night, I'd say it was about two blocks from this condo we are in.  He smiled and looked with fascination at everything he saw.  It is a far cry from Sandy Hook, CT where we can not walk safely on our own road.  

Coffee tastes better for some reason when I am rocking in this chair looking at some species of palm tree that has grown about 5 feet taller in the 6 or 7 years we have been bring Daniel here to John's cousin's condo.

I don't fear for his health and well being in this place, after all, its Naples Florida. There is a hospital near by, and a doctors office on every corner of some sort.

Sarah and I have been engrossed in episodes of HGTV all week and all I can say is that there isnt a show on that channel that I don't love.  I would just like to see an episode where they have to accommodate for a disabled child.

As my moment of peace is drawing to a close, I will add a few pictures to this post and simply end until later. Daniel has started making his "hey I'm awake in here" sounds, and he needs much care in the morning.  This white leather chair is my very favorite item in this entire condo.  Even if my moments in this place of peace are few, I will say that I thoroughly enjoy them.  Coffee just tastes better in this chair.

Sunsets are beautiful, even from a hospital room

This is my blog.  This is my world that I write about. I am Julie Hasselberger.  Daniel's Mom.  Today is April 2, 2014 if you can believe that!  Honestly, I couldn't be more thrilled to see this past winter get lost. It was awful. All winter I raved about how well Daniel was. His strength was so impressive and not even the slightest cough or runny nose.  Daniel started new, and more aggressive physical therapy at a great place called Summit Rehab.  The past year and three months since his spinal surgery/pancreatitis has been completely without incident, illness wise.  Perhaps there was a slight seizure, but his brain is a wacky mess of electric inconsistencies, so thank God for the seizure meds.


Daniel recovering from pneumonia 4/2/2014

Today, Mom (me), renders me watching him sleep from this hospital room at Yale New Haven Childrens Hospital.  This story goes something like this. Had a great day Saturday.  Sunday morning he was retching, gagging, and trying to vomit. If you know anything about the gastroenterology world, Daniel has had a procedure called a Nissen Fundoplication. The Nissen actually prevents vomiting and reflux, with the intent of saving him from aspirating his own body fluids.  But when he feels sick and wants to vomit, he can't without tremendous force.   OK.  All day Sunday March 30, 2014 he retched and gagged.  He started running a fever.  He wasn't tolerating feeds, not even a drip of pedialyte, so long story short I called GI. And first thing in the morning on Monday headed down route 34 in wet slippery snowy slush to the Yale ED. 

Spent the entire day in the ED at Yale.  Had two visits from a lovely therapy dog named Jerry.  There is something wonderful about seeing a large furry friend in the middle of an institutionalized setting.   Especially when you are sitting in a room from 10:30 am until 5:30pm, just waiting.

Therapy Dog at work in the ED



Jerry the therapy dog at Yale

The Special needs Mom lesson for today is, you can not live in a world of complacency when you have a child like Daniel.  Viruses happen.  Aspiration happens.  When the good times come, like the long wonderful periods of great health, grab that boy and hug him like there will be no tomorrow. 

Dogs bring love. No matter where you are.




Raising a disabled child is a completely different journey that most people in "normal" families can ever imagine.  Every step, of every human life journey is unique.  But these special children bring challenges and changes that can destroy a person, or build a stronger soul.



Arriving at the ED....sick

Miserable guy

Non-verbal children try so hard to communicate with you in whatever responsive way they can.  For Daniel it is eyes, facial expressions, touch, crying, biting. 
  Cozy in a hospital bed





Trying to communicate with Dad through touch

 

 

The sunset is remarkable sometimes, no matter where you are.  This sunset on April 1, 2014 was spectacular from the 7th floor of Yale New Haven Childrens Hospital.  What a beautiful gift.

 

It feels as though the world has slowed down, or even stopped "paying it forward", or "being kind", please don't let it stop.  There are many people hurting, needing, and alone.  I will end this post by saying that I've been wondering for 3 days what is wrong with the tiny baby in the room next door that just cries and cries. 

 

Be blessed friends.  And now I go back to being "hospital room Mom" .  I will try to increase my blog posts.  Life sucks me out of all the things I enjoy. But I find my way back to them.

 

Julie Hasselberger  4/2/2014

Up late

Give me some air

I just want to breathe

I am laying here lonely

Beginning to grieve

For the life that I wanted

I thought we would be

But your angry and distant

Disgusted with me

I am still just the same

Blonde hair girl with a name

I'm just needed now deeply

From someone in pain 

As you snore and you dream

I'm awake and I'm cold

I'm sad with no one to hold

So I care for your son

Watch him here all night long

The dog barks and I cringe

It's the same fucking song

So I sing it again and close my eyes

The barking gets worse

Daniel starts to make cries

Time to get up again and take a deep breath 

The only time I'll be loved 

Is after my death.