A LIFE THAT CHANGES DAILY

SEIZURE CHANGED HIS ENTIRE DAY

CARDS WILL BE GOING OUT

PINE CONES IN SNOW CRAFT

WINTER WONDERLAND

TUBA CHRISTMAS

MORE SNOW AND DECORATING

WINTER CONCERT 2017, BASSOON?

DANIEL AND THE CHRISTMAS TREE

LUNCH AT MOES TRYING QUESO

FIRST SNOW STORM OF 2017

CHRISTMAS LIGHTS FRUSTRATION

SURVIVING MY COLD AND A SPECIAL THANK YOU

A MONDAY FULL OF DOCTORS

DANIEL GOES TO THE SYMPHONY

DANIEL GOES TO THE SYMPHONY

DECEMBER IS HERE

SHAKE YOUR BOOTY DANIEL

JULIE HAIR CUT

I HAVE A PROBLEM WITH MY DOGS

HOME AND THE START OF CHRISTMAS CHEER

SO HAPPY TO BE HOME

HAPPY BIRTHDAY DANIEL 20 YEARS OLDWMV

MAKING VEGAN BIRTHDAY CAKES

UNFUSSY ATTEMPTS

A DATE WITH MY DAUGHTER

WOODSTOVE CLEANING AND GETTING SICK

YOUR SMILING

MY NEW SPACE AND DANIEL NOT WELL

FINGERPRINT CHRISTMAS TREE

BANQUET FUN

BEAUTIFUL VOICES AND NATIONAL CHAMPIONS

COFFEE COFFEE COFFEE

TAKING DANIEL TO WHOLE FOODS

TAKING DANIEL TO MARCHING BAND

SPINAL FUSION CHECK UP DAY

TREES DOWN AND HALLOWEEN 2017

IM A WINNER MOM

GUTTER CLEANING SPLASH ATTACK

DANIELS BIRTHDAY IS COMING

DANIEL IS GETTING FAMOUS

WORKING DESPITE THE PAIN

DANIEL'S HOME!!!!

DOG MERMAID

TAG SALE, PUMPKINS AND BAND SHOWS

HE DID IT!!

SPECIAL DAY, OUT OF TOWN GUESTS

NEED TO FIND A UROLOGIST??

DANIEL HAS A SILLY NIGHT

CARING FOR FAMILY

TERRIBLE SPASTICITY

MY NEW CHIHUAHUA SKELETON

DECORATING FOR HALLOWEEN

WE BOUGHT A SUBURU

IT WAS A BUSY DAY

SILLY OPERA VOICES

HAIR CUT DAY

WHY I DIDN'T GO TO THE HOME SHOW

FUN DINNER OUT

DANGERS FROM THE TREES

PULMONOLOGIST VISIT

WHEN THE DOCTOR IS CLUELESS

POST WEDDING SICKNESS

It doesn't take much to trigger Daniel into illness.  Although we had such a beautiful day at my niece's wedding the day before, Daniel was exhausted and fatigued.  He had a fever and could't exert much energy without suddenly falling asleep again.



All day, on this Sunday, I kept going....working and working, cleaning, doing laundry, checking vital signs, changing diapers, documenting... and doing everything else that needs to be done.



I was exhausted too. 



Special needs Mother's always have to be one step ahead.....   its hard when you are tired.   There is no break.



Thanks for your support, if you actually watch these video's, and subscribe to our youtube channel, thank you. 



Love Julie

AMAZING

A WINDY DAY

  PLEASE HELP..  RAISING FUNDS FOR DANIELS NEEDS....  WE COULD SURE USE A MIRACLE

SHREDDING PUPPY

REALLY HARD WORK

LOOKING UP LIKE DANIEL DOES

DANIEL MEETS HILLARY CLINTON

VACUUM CLEANER FEARS

PRIMARY CARE FOR TESTS AND CHECK UP

PRIMARY CARE FOR TESTS AND CHECK UP

Medically Fragile and Non Verbal

Sometimes its a complete mystery.  Thank you for following my blog, and our videos...   My goal is to share awareness and tell my story, about my life as a Special Needs Mother.   So here it is.



Spread Love Friends.   We have to take care of eachother...

STAYING DETERMINED EVEN WHILE WORRIED, just "push into it"

MUSIC FROM THE BASEMENT

TAKING DANIEL ON A DRIVE

I FINALLY DID IT!

CHANGES IN SCHOOL DAY

SPONTANEOUS BEACH ADVENTURE

DANIEL INSTALLS WINDOW BLINDS! WITH LOTS OF HELP

TUBA POLISHING PARTY?

BONFIRE TIME

JUST BREATHE

Anxiety from not being able to handle everything financially and all of the pressures from every direction...and worry about Daniel's health, hits me like a hurricane sometimes, and I have to work extremely hard to get through it.   Sometimes, I can breathe through it, and meditate...     Its just SO much to manage mentally, all the time, every minute....   But I am trying.    And I always pray for miracles, and help.

POSTCARD FROM ANOTHER YOUTUBE FAMILY

The amazing people we make on our youtube journey are just one of the many suprising treasures of vlogging.

IN THE MIDST OF CHAOS FIND PEACE

Chaos surrounds us.  And by practicing mindfulness, we can block out the pressure of it all...  even if for brief moments.  Learning to love and have joy, no matter what, despite all the limits and restrictions and frustrations...  is my biggest conquest in life.  Should it have to be so difficult, when life has already given my son a deformed brain...   well.... that's just how it is.



And this will be my legacy to him.

FIRST DAY OF SCHOOL AND PRESENTS FOR DANIEL!!!

September 4, 2017



Its Labor Day today.  I'm just reflecting on the many things I have to do... and want to do...and wish I could do.   As a Mom of a disabled son, my life centers around Daniel.  There are so many things that I manage.  In addition to Daniel.  And sometimes, I totally get lost emotionally, and I feel very alone.



People don't tend to ever understand me fully.  But my life is spent, loving, caring, creating... and also planning, trying, searching, praying...    resources are never enough.  There is always a crisis, or a trauma happening.  Trying to modify the mortgage, keep the cars running, put food in the fridge, pay for the doctor visits, manage the home such as...  electric, oil, septic, appliances, cleaning the fireplaces, inspecting for any damage, taxes, yard work, gardening, .....   and the special needs van???  It is so expensive to maintain.  



Because of Daniel's 100% 24 hour care needs, I can't work a full time job.  My phone is always ringing with someone trying to tell me a bill is late and I owe them money.  I don't sleep well.  I live in pain.  I try to make money when I have a few minutes to focus.   And people say "do things for yourself"  Which is, quite honestly, a very sad statement, because when I have time for myself, I am scrambling to figure out how to find a few extra dollars to keep the internet on.  etc.



I believe in love.  I want to stress that my family means the world to me.  Yes, if we had an extra $20,000 a year, things would improve.  But we spiral backwards.  John works full time, and he feels its not enough.   But I do EVERYTHING...   for the home side of things, except for cutting the grass, and splitting wood.



So when you see a special needs Mom, like me, realize, there is so much more to what you are looking at.    The goal is to care for our beloved son, in our home.... but the resources to do that incredible.

I DO NOT GIVE UP

Dear Friends, Although I seldom write as much as I used to.  Please know that every day is full of so many care giving details that its hard summarize what life is like.  If I ever look back on all of this...  I will know that my energy was never wasted.



After all, its about love.  Every minute of it all.  

WE PAINTED THE OCEAN

HERE WE GO AGAIN BAND

KEEP DANIELS GTUBE BUTTON SAFE

ECLIPSE DAY 2017

HOLLY GETS CARSICK

KEEP THE LOVE BAR HIGH

ETSY SALES HAPPENED

IM A LITTLE BEHIND BUT I WILL GET THERE

MOMENTS ON A THURSDAY

BAND CAMP TIME

BEST BATHROOM EVER!

BUGS AND TALKING TOILETS

A LITTLE RESPITE TIME

SILKY PUPPY

VERY ABNORMAL SINUSES

TURNING 18 CHANGED EVERYTHING

BUTTERFLY SUNDAY

BUBBLE PUPPY

NEEDING A CHANGE OF SCENARY

A VERY BATTY MORNING

DANIELS SUNFLOWERS GREW

WENT TO THE POOL ALONE

BEAUTIFUL SUNDAY BEAUTIFUL DAUGHTER

WALKING IN CIRCLES SATURDAY VLOG

SPECIAL LUNCH DATE SURPRISE

SPECIAL LUNCH DATE SURPRISE

DANIELS NEW LIFT SYSTEM TRIAL

DANIEL AT STEW LEONARDS

FUN LUNCH DATE

SPASTICITY AND MY SLEEP STUDY

GAME OF THRONES FANS

LETS GO TO THE MOVIES

LETS GO TO THE MOVIES

BAND CAMP PERFORMANCE NIGHT

TEENAGER LEARNING TO DRIVE

I GOT MY BRAVE ON

PUPPY ZOOMS AND TIMES SQUARE SATURDAY VLOG

HE PLAYED FOR ME!!!

UPSIDE DOWN DAY TURNS OUT OK!

JULY 4TH WITH FAMILY

HEATHER HAS DOG THERAPY

SURROUNDED BY FLOWERS

YOU LOOK SO HAPPY TODAY

DOG PARTIES AND BEACH BALLS

THEY PUT ME IN A CAGE

DAY TRIP TO NEW YORK CITY! (7.1.17)

ORBEEZ AND BUBBLES

DANIEL GETTING ACQUAINTED WITH HOLLY

ENJOYING OUR PUPPY AND SARAH IS OK

A VERY SPECIAL SCARY DAY

NO CREEPY SPIDERS

SEIZURE AT THE DENTIST

HAPPY FATHERS DAY JOHN AND ALL DADS

A DAY FOR SNUGGLE AND WHATEVER

SKY IDEAS FOR DANIELS ROOM

NEW LIFT SYSTEM FAIL

CHIPMUNKS ARE FUN

I NEED A WARM CLIMATE

I FIXED IT

CAPTURE THE COLORS OF THE SKY

FAILED SCHOOL MEETING

PULMONARY CHECK UP TIME FOR DANIEL

I MISSED YOU TODAY

FANTASTIC MALL TRIP

DATE NIGHT FUN

EERY STORM CLOUDS!!

SPIDER ON THE CAMERA

ICE CREAM WITH COWS

I DROPPED MY LAPTOP

YOU ARE VLOGGING MY VLOGGING

WUBBLE

A BIT OF PRIMPING

DANIELS FUTURE GRADUATION

DROPPED MY LAPTOP

SPECIAL NEEDS THEATER

SUPER CONGRATULATIONS

SUPER CONGRATULATIONS

NEW YORK CITY DAUGHTER

A HOT SECOND OF PANIC

DANIELS EYE DOCTOR VISIT

WHEELCHAIR ACCESSIBLE DREAMS, MOTHERS DAY 2017

SLEEP? WHAT SLEEP?

DANIEL AND THE NIGHT OF JAZZ

DANIEL LOVES THE POSITIONING MATTRESS

THE CAT SNUGGLES AND LOVES ME!!!

GRADUATION DRESS SHOPPING

GRADUATION DRESS SHOPPING

HAPPY DAN MAKES A HAPPY MOM

STOPPED BY FIBRO PAIN

LIFE IS BEAUTIFUL

JOHNS FIRE

THERE IS A PENGUIN IN YOUR SHIRT

STANDING AND PLAYING IN THE EZ STANDER

ITS SO CLEAN

DEEP QUESTIONS SOMETIMES

OUR FRIEND, A DOG WITH THREE LEGS

AN INCREDIBLE GIFT FOR US

GOOD DAY FOR THIS!

DRIVING MOM FOR FIRST TIME

My fibromyalgia is really bad.  The pain has been pretty unbearable.  I wish I could get a vacation..

IT WENT BY SO FAST!

SINGING BUNNIES, EASTER VLOG 2017

MINION GIFTS AND HUBBY TIME

A COMFORT DOG AND THE GOLDEN EGG

LOVE AND THE LAUNDRY MAT

MY WASHING MACHINE BROKE

GET TO THE CHOPPER

YOUTUBE ADVENTURE IN NEW YORK CITY

YOUTUBE ADVENTURE IN NEW YORK CITY

KEEP CHOOSING LOVE

Daddys turn to calm the fussies

DANIELS COMMUNICATION APP

SO MUCH LAUGHTER

TALKING WITH DANIEL MAKES MY DAY

CREEPY GLOWING EYES

PUSH THROUGH IT MONDAY

SATURDAY ART WITH DANIEL AND A SHOWER TOUR

A NEW GADGET

GOOD NEWS AT GASTRONTEROLOGY

TALKING ABOUT ANOTHER PUPPY

A LOVELY SURPRISE BOX CAME

SPECIAL DINNER OUT

WE SAW BEAUTY AND THE BEAST

I HAVE TO PUSH THROUGH THE PAIN

IS YOUR NOSE WHISTLING

RANDOM FUN SHOPPING

ITS A SNOW DAY FRIDAY!!

I WON A CONTEST

WORST MOTHER EVER MOMENT

WHEEZY WHEEZY

COLD DAY RUNNING ERRANDS

WATCHING FOR INFECTION

HOSPITAL DISCHARGE AND A STORY

RSV PNEUMONIA

EMERGENCY ROOM AND BAD NEWS

I HAD A 12 POUND BABY

Daniel the composer

SATURDAY WITH SARAH

NEW PULMONARY DOCTOR FOR DANIEL

OH CRAP ITS HAPPENING AGAIN

Why I am a liberal and democrats send me mail

Wow. Suddenly... in my mail... NON STOP mail, articles, and information from the DNC and other democratic organizations. I don't even mind at all. Of all the bad that has happened, in my opinion, the one pretty interesting thing is the amount of democrats working hard to be much more a part of the process, more astute, more supportive, and it feels like people really care. I think it started with the letter I wrote during the campaign, about my son, and the disabled, wrote a letter to both parties. Only one ever returned the letter. And yes I am a registered democrat, but I have not always voted on the party line. Although my life has shown me that I am a far more liberal thinker. Because I was tossed head first from "conservative" into "what the effffff am I gonna do" and then I was basically sexually harassed at my job, and then fired because my son had disabilities that were just driving claims up way too high for my employer. And when you have to figure out alternative ways of living... just like when people with disabilities have to develop new ways of living life... all the "old rules in the box" just don't tend to apply any more.

I am a dreamer. I am altruistic to a fault. I believe that love matters and is the most powerful force in the universe. I believe that our planet is not ours to destroy. I believe that truth and justice, ethics and morality do matter. I believe that people should have a right to love who they want to love. I believe that disabled children deserve an education just like all typical children. I don't know the solution to the extensive and complex cost of health care, and I don't think its something that is going to be simple to solve... but supporting a child like my son, or worse, costs millions over a lifetime. If they take away medicaid and medicare people like my son, will suffer or even die.

I don't believe in walls. The billions they are spending to build a physical wall, should be spent on programs and job creation, and I don't think a physical wall is going to accomplish anything more that more division and more hate. Do immigrants need to come legally, yes..I believe so...but by the time our money pays for this wall, someone else will probably come along and stop funding it. I cherish the globalization of our nations, and the incredible diversity that we are so blessed to have. My first love of my life was a black guy... as we said it back in 1980, and I was punished, made fun of, and forbidden to see him. Then... I just did not understand... he was such a great guy, we got along so well... and that was all that mattered. Even teachers gave me a hard time. We were told not to see each other. We did anyways, of course, because I was always rebellious, to some degree. But I was also bullied after that and for years... I hate to see our world sliding backwards. And that's how it feels.

I pray every day that peace will prevail, and that somehow, someway the negative fear mongering, nuclear thoughts that are filling every one's minds... will be replaced with progress towards peace, not hate. More jobs won't equate to... alienating the world, and eliminating the EPA. Our children should be able to travel and study the world... work globally...without threat. That is what I pray for.

I believe that Jesus Christ is my savior. That it is up to me to have a personal relationship with Him. That it is NOT about what deeds you do, but about how He lives in you. And with you. Because if you have a true spiritual connection with Christ, He will guide you. I don't believe that the way to God is through deeds, I believe that God in our hearts will use us as his vehicle... We all have unique gifts and talents... To hardcore conservatives, who preach right and wrong because they study and interpret the bible one way, those folks probably think I am wrong. But I am just sharing my own personal experience with my Savior. I personally accepted him into my heart and my life. And that relationship is my own spiritual experience. I was baptized by immersion at Walnut Hill Community Church and my life was personally changed forever.

So... the fact that someone is actually interested in my opinion, and my experience, as an MBA Graduate corporate career woman.... tossed out from "that" world, because of a little boy who needed me... and still struggling to survive... would matter. I had a dream once, it was to keep rising the corporate ladder, make lots of money, invest lots of money, educate my kids, give them security, and retire with my husband in a place where I can sit on a beach. THAT plan is gone. Forever. But somehow... we just a bit more compassionate, a bit more aware of pain, of suffering, of life without a voice, life without eating food, life without ever walking... life... with cancer, more children funerals than adults. Not having enough cash to get groceries sometimes, but creatively keeping heads up. Walking through my rich town, knowing that I have a fundraiser, and not feeling ashamed.

Did I go crazy somewhere along the way? The disabled, the struggling, the people in pain, people dying, watching loved ones die, depressed, sick lonely.... poor. Everyone has a story. Everyone matters. Whether they are gay or straight, black or white, Christian or Muslim or Jewish or Atheist.... we are all humanity. Somewhere... along the way, the corporate world said "fuck you" to me. And I couldn't fight back, because I was too busy being a special needs Mom. And I feared for my family, because I worked SO HARD to get to that income level... and then it was gone. But... we are fighters. Liberal thinkers, try new things, embrace technology, kind of thinkers. That's not so bad. And the journey.... it continues.

Embrace who you are. (all this from mail from the democrats.. lol)

Julie Hasselberger

February 13, 2017

DEPRESSION TRAPS ME SOMETIMES

SURPRISE VISIT AND WATER PLAY FUN

SURPRISE VISIT AND WATER PLAY FUN

EARLY DISMISSAL, ITS SNOWING!!

JULIES TALKS MAKEUP

LOST MY VLOGGING CAMERA

BE THE CHANGE YOU WANT SEE IN THE WORLD

SATURDAY BLOOD DRAWN HANGING OUT

ANOTHER SICK NURSE

OH NO! NURSE CAN'T COME

A PINE SCENTED FLUFFY DOG

DANIEL LOVES WATCHING BROTHER PERFORM!

SICK HOUSE WARM DAY

SNOW STORM AND PINK FLAMINGO PLANNER!

THUMBPRINT MAGIC FUN

FIRST DAY OF 2017 HAPPY NEW YEAR

THE FIRST DAY OF 2017 HAPPY NEW YEAR

BUH BYE 2016 NEW YEARS EVE

GIANT BUBBLE FAIL

New Year 2017... thoughts

January 2, 2017

Here I sit looking at a new year.  I'm 50.  My kids are 21, 19, and 15 (almost 16).  Daniel will be in public school until 21. Just thinking about him mostly.  And what things I can do to help him.  But I also have to make considerable progress, on me.  ME.  Can you believe I am saying that.   My Mom had a heart attack on Christmas this year.  We all need to realize that our health choices have consequences (when we are in control of them of course).   I suffer from Post Traumatic stress, and intense anxiety and depression.  And of course, Fibromyalgia.

I worry almost constantly about money.  About paying bills.  About my children's future.  About Daniel.  Life is really hard, as a caregiver.  You are responsible for the lives of others, making it really hard to care about yourself.  Which is really weird for me, considering I am self admittedly a once very very self centered ego focused person.  Middle child syndrome?  Maybe.  I enjoyed being fashion forward and into looks.  And health.  And then I had a child with massive disabilities and felt selfish caring one iota about my own needs.  Because his life depends on me.  Plus, I got really sick.  deal with massive pain every day.

New Year.  Well.  More time to spend on meditating.  On encouraging others.  On writing. On learning how to be healthier WHILE having fibromyalgia, because it doesn't ever go away. More time for romance with my husband.  Yes.  Massive issues with money, stress, medical care, all exist and are growing.  But we have to train our brains to deal with those things, BUT not put them in front of the things that make us happier and healthier.  Ironically, the happier and healthier we are, the better we do with managing our financial lives.   The inherent problem with caring for a severely disabled and medically fragile person, is this...  at any given second... WHAM... another $10,000 expense hits.  and a hospital trip. And seizures come back.  Or spasticity goes out of control.

Statistically, caring for a disabled person in your home, will cost quadruple, if not more...the cost of raising a typical child through their college years.   Probably more...because of home accessibility, transportation, and the time you have to give up that you could have been working.

The Love... is like an open bank that pours like a never ending river.   But in our society, people like my son, are a cost.  A bill.  Something people turn away from and try to ignore if it doesn't affect them personally.   But Daniel is a human being who deserves a good life.  And a normal, hard working educated family like ours, is crippled from the expense.  Imagine a single Mom who is 18 and has a disabled baby.   I try to advocate and be a source of support as much as possible.

New Year?  Yeah right.  OK.  My 2017 will be a continuation and growth of my YouTube channel "Julie Hasselberger"    The journey of me.  Of my life as a Mother who is 50.  And has a severely disabled son with a rare brain deformity...  love, life, and laughter.  Always reaching out to encourage others to join our journey.   More time for Yoga.  Losing weight...  yes... I really have to try.  And most of all, even with not sleeping nights, and suffering from massive anxiety about finances, I have to continue to dig deep and find positive ways to keep my heart strong, and not sink into that deep dark depression that, because of my history, always lingers right there on the surface.

My life, in 2016, was NON stop caring.  We had no break.  No vacation.  Saw no beach.  Felt very little "relaxing".   But we did see one daughter go off to Ireland to study for 4 months, and encouraged one son to continue his incredible passion and talent with music, via a jazz instructor who is amazing.   Renovated a Mold infested bathroom...  only to find out the cost was triple the estimate and landed us with another big loan on top of all of our other loans.  And now, the bath is leaking again.  More holes to repair.  But that is just home ownership.

Daniel's big van... needs new tires, and we just can't afford the $1500 charge for annual maintenance on the lift.   We would LOVE a new minivan with a manual style lift...  but they are expensive.  Of course.   Our other car has 198,000 miles on it!!!     We teeter.  and we survive.  And work hard.  really hard.  REALLY REALLY REALLY REALLY hard.  

Because life is about family.  And taking care of family.  And giving of our hearts to those that matter most, in the moment.  In the minute.   While we are here.

And I suppose that is what 2017 will be more of.  While we wait nervously to see if Daniel's benefits that have helped us so much, will be taken away.  

We love.  We care.  We want to make a difference in this life time.  And making a difference means being brave and stepping out of comfort zones, trying new things.  Even with crippling health (mine) and exhaustion and financial stress that is completely unrelenting when you can only rely on one salary.

One day at a time.  Making the most out of smiles and realizing that life is so freaking fragile.  When we die, money will no longer matter.  Ironically, lack of ....  puts many people into their graves.

Daniel is a teacher.  He has a message for this world.  And I am his voice.  Through the vlog, we share that voice.  We have fun too.

Happy New Year.  Please spread kindness.   We are all here together.

Julie Hasselberger
January 2 2017