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

Depression, when sad doesn't need a reason

One day you sit in your house and feel like there are a hundred things you should do, and people you should talk to, but you are frozen.  With no particular reason, the world just feels empty and flat.  Its hard to motivate yourself to do anything.  So you try to sleep.  Then the pretending kicks in. Pretend to smile.  Pretend to be busy.  Pretend to be "OK".  But you are sad.  Sometimes.

The medications help most days. But not all days.  Its just not that simple.  Most people say they understand but they really don't.  They expect that you should be behaving normally and being cheerful if you don't have a reason to be sad.   But even with reasons to be sad, those reasons are not necessarily why a person can feel like they are in a thick cloud of goo.  Just stuck.

When your brain doesn't have the right chemical balance, your perception of life is a direction reflection of what your brain is doing, or not doing.  Depression is not a choice.  It is an illness.  It makes you feel like a failure when you realize you have forgotten to do so many things of importance.

And then you reach hard for that ability you have worked so hard on. To meditate and be in the present moment.  To find joy and love all around you. To be grateful.  Its all work, but one slight change in perception can truly make a difference in your day.

I imagine everyone who suffers from chronic depression has people in their life who simply don't understand, or believe that it is even a "thing".  They consider you lazy, or "out of it", and tell you to "cheer up",  and "take a pill".   So you go to your therapy session, and after years of therapy you sit down, take a deep breath and wait for whatever is ready in your head, to just expel itself.

It does not mean you don't care about people.  It does not mean you don't love your family.  It does not mean you are incapable of living a happy functional life.  Because with treatment, and care, you can.  But it does mean that there will be rough patches.  And it does mean that there will set backs and things that just derail you.

The battle with choosing happiness over darkness is a daily game for someone who is depressed.  When you can win most days, you have developed great skills, and the medicine is helping.  And maybe you will be able to go for a walk that day, and actually get through your piles and piles and piles of insurance paperwork.  Feeling accomplished.

Other days, you have a crazy strong desire to be creative, to paint, or play the piano, to write poems or songs, to experiment with make up, to color in a coloring book, to buy a guitar even though you don't know how to play but want to.  Reaching out of your funk to have faith in "what can be"  Just allowing "whatever" to guide you.  Its all a possibility.

In some ways, depression is a way of slowing you down.  Because life can flitter by, just like that, and all you have done is paid bills, cleaned your house, done your work, and gone to the doctors. Day after day.  And you have not helped anyone, or laughed much, or created anything, or made a change in the world.   Depression requires that to make a happiness choice, you have to push through the walls of that "BOX" that society puts us in.    For me, I did that on the day Daniel was diagnosed as completely disabled.  My BOX blew up actually.   So I am making my way.

I never mean to forget things.  I love so deeply and care so much, but sometimes I forget to tell you.  I want to be better at that.  Sometimes depressed people hurt and anger the ones they love the most.  And they have such guilt about it.  Sometimes depressed people seem like the masses...  moving along like lemmings headed toward a cliff.  But they step out and turn around, and go back home.  They put on the TV and watch a Nicholas Sparks movie, and cry for 2 hours when they should be productive.   Altered reality I guess.  But it doesn't mean they are crazy.  They are just coping.

Some people in my own life do not know the extent of my depression, nor do I tell them.  Sometimes I talk about it.  But mostly, now, I deal with it.  My spouse will not come to my counseling, despite years of almost begging, because he could really help in my treatment.  But I think he's more depressed than I am, and afraid to face his own reality.   And he thinks its a stigma and that medication is a weakness.   So his anger stays, and my depression heads to the doctor, and the therapist.   Everyone has their own coping choices.

On my journey, I choose to find joy.  On the worst of days, I force myself to be grateful and joyful for a God who loves me, and a family that adores me.  There is joy everywhere.  With each little moment of joy, I find a peace that is warm, because its like following a path.  Or follwing little lights in the forest, they lead you to a new perception and a new way of looking at things.  And that leads you to more joy.  If you choose to follow, you are choosing to move towards light and happiness.

There are negatives and positives in life.  Sometimes, the things we think are the most positive, are actually toxic and dangerous for our hearts.  Sometimes things that seem hopeless and negative, are really opportunities to grow, to change, to learn, to feel joy, and to connect with humanity.

Finding joy in the journey.  Every day.  And sharing it. With you.

If There Was Just A Way

If there was just a way
For just one day
To let these pressures fly away
I would dance and sing
To see such light

For now I'm tired
As all I do is try
To keep life going
And keep my heart high

I want to cry instead
Curl up tightly in the covers on my bed
But I sit here thinking
As I try to clear my head

Its not meant to be easy
No doubt is in my mind
It is meant to make me struggle
Not to ever look behind

But in this moment as I sit
And feel my soul deflate to gray
If there is any way
 Dear Lord,   could you??
Bring me for just awhile
 To feel the way you do.??


October 18, 2011