ELBOW PAIN, REALLY

SNOWY MONDAY

BREAKFAST WITH SANTA FOR WISH FAMILIES

DON'T FALL JOHN!!!

IN THE CRYING CHAIR WITH JOHN

SANTA WAS A NASTY BULLY??

I AM LIGHTING UP THE CHIME TREE

A BIG BUCK!!

THANK YOU SHOUT OUTS WITH DANIEL

I LOVE NICE PEOPLE

TAKE CARE OF YOUR SOUL FRIENDS

SOMETHING IMPORTANT TO TALK ABOUT

SUPERMOON PERSPECTIVE

METLIFE STADIUM WITH DANIEL

JOKE IS ON ME! THEY GOT ME!!

THE BUS EQUALS BIG ACCOMPLISHMENT EACH DAY

SOMEONE'S BIRTHDAY TODAY!!!

IT IS EASY TO GET LOST HARDER TO KEEP TRYING

DANIEL HAS MANY MOODS

LOVE GIFTS AND GETTING CHEERFUL

SUPPORTING MY KID'S TALENTS

NO NURSE NO PROBLEM WEDNESDAY

NO NURSE NO PROBLEM WEDNESDAY

KEEP PUSHING KEEP FIGHTING

sometimes I just get tired.   Its too hard.  Too much.  So much pressure.  So much expense. So little money. So tired. So little sleep.  I worry that I am just going to die suddenly and things will be a mess and I will just be worn out to survive.  So I keep pushing.  Keep fighting.  This is my life.  Taking care of this family.  Making sure they are all OK...   Keeping those smiles coming..  brains engaged.   I lost myself years ago, and have sort of, kinda found myself again.    Taking care of another person full time is a lot for the soul to bare, but love can move mountains.   And I just want to make a difference in a joyful way.    



All I really wanted was to have a house, a family, a simple life.  But it would be a dream from heaven if I could go to Ireland to see Sarah for 4 days ( she wants me to) and even though I got my passport, I just have so many expenses.  John's hospital bill was $1100 for example.  And our deductibles are $5000.  It just keeps going up and up.    Social security gives me pennies for Daniel, way less than I ever thought he would get.  So that doesnt' help.   Trying to figure it out.  Juggle juggle... no fun, no relaxing, no vacation, just always caring and giving.      Sometimes, a person can start to feel really lonely this way.    Who do I talk to ?   My you tube channel and my therapist, and my sister.  



Because I never want John to worry.  He's a good man.  Working hard, tirelessly.  too.   The financial end is the hard part.  Because if you have to care for a special needs person, you can't work full time, their care is a full time job.  But then you can't work.     You get to a point where it seems like its all getting set and coming together... and then it all falls completely apart and you have start over,  



I would love to sell and move out of the north that is terrorizing my health and Daniel's.  But I literally stuck right now.     Trying.  Pushing.  Maybe someday I will open my mailbox and a miracle will happen.  I am working on the good karma vibes.   But BOY does the anxiety attack you like a swarm of bees every time you check your bank account.     Freaking sucks.  Then you have to find the positive mood again.   My entire life has been a financial upheaval....  what makes now any different.



I guess I'm just getting older.   And I have to push even harder and harder and harder.... to maybe someday have some time to relax, and enjoy the sunshine.   Do you think it will ever be easier?   Anyhow.  I have lots of love, and people around who care....no matter how rich we are.  or poor.

Daniel is the love of my life, and he deserves a good quality of life.   So yes, the career had to go, and this is the life...  the way it is supposed to be.    I just have to get better.  And keep trying.  And keep pushing.     Thank God my husband loves me.



Please subscribe.   I'm trying.  I really am.  I mean really really really trying.

PANCAKES AND POLITICS

I CAN DO THIS, I CAN

DANIEL IN THE RECLINER WITH HENRY

DANIEL AND I, ON A DATE

SPINE DOCTOR VISIT

THATS HOT

WINTER IS COMING

BREAKFAST DATE and ART FUN WITH DANIEL

AMAZING MAIL, OH MY GOSH!!

Saturday October 1, 2016



Hi everyone.  Welcome to the world of vlogging and blogging.   If you would like to send us mail...



our address is Julie Hasselberger  PO BOX 3611 Newtown CT  06470

Thank you and please subscribe to our youtube channel too.



Have a awesome day.  Even though I am struggling with very severe fibromyalgia pain, trying to make ends meet and need so much help financially even to cover medical needs, and more than ALITTLE busy with tons of issues with medical care, therapy needs, educational stuff...    and my entire family management..  I try to keep my heart strong.  



This world, our society, does very little to help people in my shoes.  I had to walk away from a full time professional career and have dedicated my life to caring for this young man.  But It is a punishing decision financially, and that's just not fair.



Have fun.  Find JOY in the journey

STOMACH DOCTOR

WALKING IT OFF

CHILLY

SPECIAL GIFTS FROM A FRIEND

OWL SURPRISE

NEW AFO TIME

NEW AFO TIME

THE NEIGHBORS CAT

EEG

PACK WITH ME for COLLEGE | Study Abroad Packing | Sarah Hasselberger

WALKING THE DOG

SATURDAY BLUES

NOT THAT KIND OF LABOR

SAVING THE FROG

Dont panic

BACK TO SCHOOL 2016

TIME TO SAY GOODBYE

PUT THAT THING BACK OR SO HELP ME

SLEEPY BOY!

DANIEL SHOPS WITH THE GIRLS!

Daniel's Seizures

GOOD NEWS!

GOOD NEWS!

DANIEL DOESN'T WANT TO BE IN HIS CHAIR!

DANIEL CLEANS THE KITCHEN!

I LOVE MY SISTER!

DANIEL MAKES A NEW FRIEND!

DANIEL LOVES TO GO SWIMMING!

OUR NURSE IS LEAVING!

MEDICAID WON'T PAY FOR IT!

THE BUSIEST DAY EVER!

HAPPY BIRTHDAY JULIE!!!

WHAT'S HAPPENING HERE?!

HAPPIEST FAMILY EVER!

The Best part of coming home is A DOG

A little black dog fills life with love

HOSPITAL MELT DOWN!

Silly Singing to Daniel

SPECIAL MUSIC

DANIEL GOES TO THE DENTIST!

FIRST DAY OF SUMMER SCHOOL!

HOSPITAL & ULTRASOUND

SHHH, DANIEL IS SLEEPING!

LIFE IS WHAT YOU MAKE IT!

LIFE IS WHAT YOU MAKE IT!

MY LITTLE WORLD!

Everything is OK?

DANIEL GOES SWIMMING!

HAPPY FATHER'S DAY!

I saw an OWL in my YARD

THAT'S NOT EVEN FUNNY!

LAST DAY OF SCHOOL!

WAKE UP DANIEL!

Please subscribe to our Youtube channel!!

ADVENTURE TO LONG ISLAND!

DANIEL LOVES BUBBLES!

HENRY THE COMFORT DOG?!

HENRY GETS A HAIR CUT!

DANIEL LOVES HIS DOG!

CUDDLES AND LOVE

BEST TRAINED DOG!

This is my Mother's Day Video 2016

A really pretty Latte

EEG day 2 Exhausted

 PLEASE SUBSCRIBE

My thyroid is bad

Symptoms of Hypothyroidism

Fatigue

Weakness

Weight gain or increased difficulty losing weight

Coarse, dry hair

Dry, rough pale skin

Hair loss

Cold intolerance (you can't tolerate cold temperatures like those around you)

Muscle cramps and frequent muscle aches

Constipation

Depression

Irritability

Memory loss

Abnormal menstrual cycles

Decreased libido

So..... I went yesterday, and had my follow up thyroid bloodwork. I have been feeling SO HORRIBLE... and just about have every single one of the above symptoms. My numbers were extremely elevated. Way way over the normal range. Which means, I have Hypothyroidism. Which I am not surprised. Its funny because I am always cold.... can't get warm. Anyways.... I was impressed that the doctor called me at 8 on a Saturday morning. I have to go get the medication today.

I've not been eating much, as a matter of fact, the new medication from my psych nurse causes considerable weight loss. So my poor self is fighting against my poor self.

I have been worried sick, about the big black mold spot on the ceiling in my foyer (under neath our "other" bathroom) and coming through near Daniel's door. Just when we fixed the other mess. That is why I posted the go fund me.... because I need to open up that ceiling, and it will probably be a mess. We wouldn't completely (hopefully) have to gut that bathroom.... but we might.

The guys are probably finishing up the hall bath this week.

I have to go up in the attic today, and inspect for evidence of mold and/or bats. The guys who painted???? yeah. They never closed off the open spots where the bats were getting in. They are not here yet, but breeding season is around june.

I'm just worn down.... all I want really is for Daniel's environment to be healthy. John and I are working our bums off to take care of Thomas's musical development, Sarah's college goals and dreams, and Daniel's massive needs in every element. And hang onto the shreds of a happy life filled with laughter.

If I had better health, I could probably work even harder, but as it is, I am worried sick, never sleep, have anxiety, and it HURTS to move around.

So maybe the bad blood result is good, and I will feel alittle better, so I can push myself harder and go back to work this week. I am borderline considering applying for disability. And John keeps telling me all I have to do, is just move more. Bless his heart.

Amazing Effect of Music

Saturday morning routine

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