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