HAIRCUTS AND IRISH GNOME SILLIES

Separate but parallel universe

May 30, 2019 

I have often described a feeling of being in a separate, but sort of occasionally parallel world.  Having a severely disabled child, while also raising two typical children placed me in a strange position of belonging to one world, in a false state of "being like every one else ness" that you feel at a kids soccer game, or watching a band performance.  When Daniel was not with me, I just melted into the crowd.  

When Daniel was with me, because I never wanted to leave him out of anything, and in the early years (prior to the blessings of medicaid expansion) I did not have any nursing help.  

While navigating my own personal trauma, depression, PTSD and stinky fibromyalgia, I was also keeping a brave face on.  Letting the world think I had it all together.  And boy do people think I am some sort of a super hero.  The compliments flood, because I honest think that people don't know what to say, except "you are an awesome mom", "you are so strong", "God only gives you what you can handle", and it goes on and on. 

But the reality is, when push comes to shove, people don't seem to want to be around me.  For 5 years, Thomas (in his spectacular musically talented way) was in the the Marching Band.  I was so excited to be a band mom.  To be involved, and on committees and do stuff.  Only the real news was, I couldn't commit to anything.  Never knowing if I had nursing care, or if Daniel was going to be well enough, left me in a lurch.  So I just took a seat on the side line, and watched everyone else be pit parents, sell merchandise, run bake sales, laugh and talk and make friends.   While I sat, most of the time with just Daniel and I, in our little wheelchair accessible bubble. 

A sprinkling of parents would certainly be friendly, no one is mean, but just like in the rest of the reality of life, people mostly look away from a caregiver and her son.  They are too focused on themselves and their children, and their jobs as involved and supportive parents. 

I never expect anything from anyone, I let it go a very long time ago.  And I no longer have even a single friend that I can comfortably call and say, hey... want to go for a coffee?   

I did have one friend, who had a son in band, he had mild special needs, but she was SO nice to me.  We kept talking about meeting up for coffee.  But then she had to move to Pennsylvania.  Now I regret that we never connected at Starbucks.

I don't want people to pity me, but I just gave up after awhile.  The isolation while in a crowd thing? Is a real thing.  Or maybe I just have incredibly bad dissociative disorder.  

I am 52 years old.  I have been reinventing myself, every day, since the day I found out that my child would need me 24 hours a day.   PMG is a rare condition.  There was no outline for what would happen, there still isn't.  Not that anyone has one really. 

It surely would have been nice, to have had some close friends over the 5 years that Thomas was in band.  I have that sprinkling of a few, who when I run into them, they are absolutely genuine and wonderful.  For the most part, for every thing, unless I had John by my side, I was floating in that parallel dissociative separation called Special Needs Mom. 

Carry on.. 

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.

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

Special Needs Mom's 2014 Goals and dreams, bumping the track of stress

Yeah, so here it is. HAPPY NEW YEAR. 2014

Time to "start the resolutions"

When is minus 2 degrees outside the air hurts to breathe. I don't dare bring Daniel out because he doesn't regulate well.  So its winter and I get it.  We live in a place that is horrendously expensive and has weather that gets too cold to function in.  I wonder how many days out of the year I keep Daniel in the house to protect him from the elements. Probably alot.

The Holidays are over.  They were remarkably uneventful and relatively normal.  It goes without saying that the out going nature in me misses going to Christmas parties, out for dinners, and just doing fun things.  The big event was a trip with the kids to see Frozen.  Daniel really deserved to get out of the house and it was New Years Day.  That trip cost me $47 plus another $20. for food and that was WITH a free coupon for popcorn.   It is incredible to me to that many people go to the movies all the time.  Now, I LOVE movies, but have to watch them when they come to cable.  It's cool.  I almost never can get away anyhow.

Keys are falling off.

Crashes all the time

The holidays are usually a struggle and half ($$$).  This year we managed to get the kids a couple of things that they really wanted, but not everything.  It seemed like they were happy and satisfied and grateful.  Then there was the mysterious IPAD that was shipped anonymously by one of Santa's Elves to Daniel right before Christmas. The person sent it anonymously.   He loves it, and uses it for hours and hours.  The pay it forward, "acts of Kindness" runs rampant in this area.  I am so grateful for that gift for him, because there is no way we could afford one.  In fact, my laptop is an 9 year old Dell Inspiron that is slowly dying.  My dream lap top is a MAC book, because I would really like write more, and publish more videos.  My new years resolution is to become better at video blogging and making interesting videos.  However, it is virtually impossible on this old clunker.  My laptop is missing the R key.  What I type, I have to press ten times hard where the R used to be and it works.

Live to dream

I'm dreaming of a MacBook

Live to Dream

I don't know what to say about my goals and dreams.  I have them. Such as the big one, enroll in an RN accelerated program, start working out at a gym again, write down more information and ideas about how to take better care of Daniel, become a better wife and mother, get healthy,  and get myself a new lap top, and a new sophisticated video camera.   And I have already started the number one goal, which is to get my butt to church more often and make Christmas bigger than just the holiday.

So it sounds like its feasible yes?  It would all be perfect and I could be happier and healthier.  My kids especially Daniel would have a better life because I could provide more. I would have self satisfaction and self esteem improvement.  I would develop a new career that I love which would be flexible, that I could take with me to Florida someday. (SOMEDAY I DREAM)   I would look better.  I would sleep better.  I would have technology at my fingertips and it would allow me to do so much more for my family and for others.   So one of the biggest prayers I have, is asking God how can I get to this place when I don't have a

penny to my name.  The financial pressure and stress sucks my cash, and my energy. I have an insurance license for property and casualty but I completely dislike selling insurance.  I'm sick most of the time.  I am at least 70 pounds overweight.  The gym cost too much money.  Walking is ridiculously out of the question on a consistent basis. (um minus 2???)    I have zero credit because we are still dealing with serious issues from past debt and medical bills.  My cars are falling to pieces, well, mostly the Windstar.

This, my friends, is just an example.  Have a goal, hit a wall.  Have a dream? Feel it die. Want to progress? It all cost money.  But the real hard part is Daniel.  Daniel could be enrolled in swimming programs and be stronger. If I could afford it.  Daniel would have better therapy, and would go to external programs that would help him stand better, get stronger, move more.  Daniel would have more technology and more time for learning.  Daniel would be 100 times more advanced than he is, if I just had the time and money and health.   I look at him sometimes and I feel sick to my stomach because he has so much potential to do SO MUCH more and I just can't get to that point.

I DONT KNOW HOW TO CARRY DANIEL ACROSS THE GAP!!!!

People let me tell you something, it is not a cliche or a robotic repetitive whine when I tell you that I want so much for my family, my children, my life, my marriage, my community, my world.  But raising a human being who is 100% reliant on you for their complete life and needs, is a BIG DEAL.

All of the things I dream for.  Wish for. Try to plan for. Fall tragically by the wayside because the resources are so lacking.  Just paying the basic life expenses is rough.  You want to stay in your house? Well, yes, I do because the schools are outstanding for Thomas, and Daniel is still a part of the schools, and we couldn't sell it if we wanted to anyhow.  Plus it is modified for accessibility, partly.

Hear me. Please.  I have goals that to many would simply be the swipe of a credit card, done.  The writing of a check, there you go.  But I am stuck in a perpetual rythym of stress that prevents any of the next steps from progressing.  It's about money.  It's about health.  It's about exhaustion from trying.

My blood pressure is high now, and I am on a pile of medications for "stuff".  It's ridiculous because our medical costs are rising for Daniel, and for Julie.  It could be the other way around.  Yes.  A laptop, the mortgage, a reliable car, a new education, a commitment to health, and I will say, etc.   Yes my world would flip upside down if I could break the cycle.

But how do I do that?  How?  SuperMom only has so many waking hours.  Every penny is needed just to feed us and keep us warm.   How do I grab those dreams and push forward for my son.  FOR MY SON, when I can't even get credit enough, or a loan, or a job.   I rattle and shake myself trying to figure it out.  They say "you are doing such a great job taking care of Daniel Julie."  Thank you, I say.  But in my head I think NO.  NO I'M NOT. His hamstrings are tight, he needs to be in water, he needs to do more, see more, learn more.  There are thousands of things I could be doing for him.

And all I can do, is take a nap, and pray that my debit card works because I need to pick up prescriptions.  Perhaps there is a helping force out there that could bump me onto the track of my dreams and goals.  I was there once in my life.  Bump me into a place where things are possible, and my enthusiasm and hope returns. Perhaps in a Dr. Suess kind of world I would find someone to lift my dust spec up and save me.

It's minus 2.  My laptop just crashed twice.  My pointer finger hurts from hitting that R key.  I have stress because of the above mentioned things and I am going to spend the next hour trying to destress and get my blood pressure down.   Sigh.  Where is my bump to my dreams?

Daniels Finger Print Tree

December already? We just had Thanksgiving!!!!

December 2, 2013

A Monday morning it is, gray and dismal I think.  Adding insult to injury the septic truck just came and cleaned out our septic! Now the three words are gray, dismal, and stinky.  But somethings we have to do are simply stinky, but necessary.

Thanksgiving was alot of work for me physically.  I cleaned and moved furniture and sorted and cleaned again.  The fibromyalgia is so bad right now that I could hardly move on Thanksgiving morning.  But I overdosed on Advil and pushed myself.  It was nice to see family, and especially nice for Daniel who can see his family and also be in his home with his nurse.  Daniel is now 16 years old, and yes he had a spectacular birthday!!!  Lots of birthday cards came, and I am STILL working on them, but he has a giant mural of them in his room and some of them will be framed and put into scrap books for him to enjoy.  He loves looking at them.

I ate way too much pie.  Just had to say that.  After everyone had left, I had lots of pie.  I am feeling depressed so having a giant apple pie in my face was not particularly a good idea.  Oh well.

Daniel is doing pretty well. He just is not sleeping through the night.  He is having sleep study this month, to see if there is any apnea going on at night. I suspect, as does his pulmonologist at CCMC that he is having breathing issues at night.

Needless to say, I'm basically exhausted all the time.  When I can get a good solid nap in, I feel somewhat healed from the fatigue.  I did see a rhumatologist recently, but I just don't have the time to follow up on all of the things they want me to do right now.  I'm a pretty sick lady.  Kind of a hot mess really.  But I push myself through it.

One of the things I loved about the cards, was how many were sent from the support group families.  It touched my heart really really deeply.  They know.  They understand.  This journey is not a solo journey.... I think it is like a virtual giant NYC marathon of families all over the world.   We are all at different points in the race, but we are moving along facing very similar challenges.

Daniel is the love of my life.  As are my other children.  But he just has something in those eyes that is so pure, innocent, and true.  He brings out the best in me, that's for sure.

So where are we today, on December 2, 2013?  Daniel is at school with his nurse, Marques.  Thomas is at school at Newtown Middle School, he is in 7th grade, he's my little Baritone sax playing prodigy.  Sarah is back to college after 5 days home for the Thanksgiving break. She will have finals soon, and its amazing how fast the semester went by.  Henry is napping in his crate.  The cats are sleeping.  John is at work, he works at Hologic in Danbury, (breast imaging equipment people).  And Julie? Well....  I am sitting at my desk, in the quiet, writing.  By my side is an enormous PILE of bills, cards to send, and a list of people I have to call. Bloodwork, endocrine, flu shot, follow ups....  I am completely overwhelmed with how much everything costs, and simply trying to juggle it all.

I'm shivering.  I don't know why because it's warm in here.  It's all consuming, and quite depressing because I never get to the finish line of anything.  In front of me, in a file holder is a folder that says, "Nursing College", my biggest dream is to go back to school and get my BSN.  However, it is the farthest dream from reality right now.  I have too many issues in my house to contend with.

So carry on through this Monday morning, as gray and dismal as it is.  I wish I had the stamina to search Cyber Monday sales.  Christmas will just have to wait..

I'm sure I gained weight over Thanksgiving, when you are depressed, stressed, and have to walk on eggshells all the time, food becomes an obsession.  Yes, I need therapy with this obsession.  I wish I could get like, Oprah Winfrey, or Dr. Phil, or some famous person to scoop me up, put me on TV with all of my life story, and fix me.   I would love that.

Instead, I am going to spend time doing what is the best thing.  Praying.  Praying. Praying.  Time to go.  I need to upload videos to my Youtube channel, Julie Hasselberger.

Have a wonderful day friends.  Please do something kind for someone else today.  Acts of kindness are necessary food for the soul.

My motivational Moment of the day

Facing the Giants - It's all heart from here

Everyday when I wake up, there are giants looming all around me.  Waving weapons of responsibility, advocacy, fixing things, bills to paid, phone calls, piles of papers, things to review, appointments to get to, procedures to schedule, earn money$$$, work harder, house is falling apart, kids need clothes, therapy, college, mortgage, utilities, doctors, supplies, medicine, laundry, manage it all giants.  Giants each wearing a jersey that says what they are. They intimidate me and make me want to pull the covers over my head.

But I have no choice but to face them.  There will be a day when the giants become virtually insurmountable and the decision to push will not be an option.  We are that way, when we protect a child.  Nothing else matters.  And when you have a child with special needs, who is incapable of doing anything for themselves for the rest of their life, indirectly that is a giant you have to dance with for the rest of that child's life.

This video is not about a highschool football team.  It's about the gift of leadership.  This coach pushes Brock farther than he ever thought he could possibly go.  Because Brock couldn't see, and he just had faith in himself and in his coach.   "It burns", "I know it burns!!!".... "It's all heart from here"

I feel like life does that to people.  People go about a life, that is safe, controlled and comfortable.  They have what they need, and they proceed in a routine way.  No disabled people, no sick people...just normal life.   

And then there are the people who face great trials. The birth of a severely disabled child, cancer of a loved one, loss of a child, losing a job and all security, and whatever Giant "Giant" falls upon them.  

You then put your faith to the test.  It's then that you realize the true meaning of  "its all heart from here".  Blood, sweat, tears, pain, and you just keep on pushing.   Putting yourself out on a limb and leaving it all in God's hands you just keep on going.  Then you fall down.  It's give up time. It's time to just say forget it, I'm too weak, it burns, it hurts too much, I can't do it.  And while you lay in your defeat a voice says to you...  "Give me your best Julie.  This is NOT your best.  Get up.  Don't stop. It's all heart from here.  I'm here for you. I am with you. I love you. I will sustain you. Get up. You are better than this. Don't fall to despair and don't fear, because when you get to the end of this difficult road, it will simply turn into another difficult road.  Winding and winding and winding.  But I will be here.  Don't stop.  You will be rewarded.  I know it's hard.  I know.  Don't look at others.  Their choices are different.  You have no choice.  I know you won't stop. 

So, I take a shower.  Drink 3 cups of coffee.  Pull my messy hair up in a clip and sit down at my desk, facing those giants.  Or sometimes I just ignore them.  Or sometimes I just pray for help.  Or sometimes I need help.  But I don't go back to bed. I don't sob into my pillows until Daniel comes home from school.  I make calls to doctors, I call about bills, I negotiate with creditors, I figure out the oil price plan, I order more diapers, I order more medicine, I schedule a 6 month assessment with DSS, and then I go outside to walk my little dog Henry.  We practice his commands, and we take a walk.  I am definitely not alone.  

Faith lifts me back up, every time I remember to ask God to please please please lift me up.  

I can't wait until Daniel gets home from school each day.  It's a gift that he's healthy and with me.  And it's all heart from here.

Sister leaves, Football struggles for Thomas and Henry howls and makes us laugh

August 20, 2013

There is a warmth today that is uncomfortable. I washed Daniel's van and it became quite clear that I chose a project I wasnt going to enjoy today.  

Daniel is, after all of my bragging about his healthy state, suffering from gunky congestion today.  It just goes to show you, that when you least expect it, expect it.  And we are managing that as we always must do.  Daniel finished up his STARR summer school program, and is basically hanging out until the rest of August melts away and school starts again on the 27th.   He had physical therapy today, and his hamstrings are terribly tight.   I need to do more.

Sarah is just about finishing her packing for her move to college on Thursday.  I am pretty sad, as most Mom's are, but she is the sunshine and the fire in this house.  Her vibrant personality shakes the walls and fills the halls.   I just don't know how it will be without her.  Thomas will be busy, but I know it will be strange for him to no longer have her to talk to.  Daniel, of course, is unable to speak and communicate with us on an advanced level.  She's heading to Wagner College to study Arts Administration and she'll be very close to New York City.

 FOOTBALL 2013....

Football started up the first week of August.  Thomas has been struggling with some emotional issues, and I worried that he wouldn't do well.  He got into conditioning week and just felt like he had no passion for anything anymore.  I reached out to the coach and to his trainer at the NYA to see what I could do to help him, what did they suggest?   But sometimes questions are not responded to.  People are busy.  I'm the one worried about this Thomas.   This Thomas who is brilliant.  Who, we discovered has perfect pitch.  Who, taught  himself to play a Tenor Trombone with an f attachment in a few short weeks.  Now we are paying off a Baritone Sax and a Trombone.   This Thomas who played and did an improv solo in a jazz band consisting of adults and highschoolers.   

But Football...  he likes the game.  He just feels like he doesn't understand how he can "EARN IT" if he never gets the chance to apply skills, and take instruction.  I just look at him....yes he is a bigger guy, and yes he needs to be faster, and to move his feet.  But about that, he is sharp as a tack, smart, and eager to please.  Last night at practice he hung off to the back of the pack, he looked down...and I was worried about the things that are red flagged in therapy.     Well, anyhow on the football thing, he is not fast... and even though everyone tells him he has potential, he seems to spend so much time just standing on the side or kneeling.  I don't claim to know that much about the sport.... but I do wish the kids who are in need of "earning it" time, got more time to try.   Maybe if John had been more patient and more involved, and got in there like the other Dad's Thomas would try harder.    Instead he has me...   THAT lady, with the wheelchair and the little black dog.   Urging him on, in her mind, as he struggles through the running.

The other parents tell me encouraging things, but I have a boy who comes home feeling like "crap".  I don't know what to do.  Except stay positive.   

Boy do I love the sound of that saxophone when he just picks it up and that amazing bass sound just comes soothingly out of the horn.   

I am doing something to  help both Thomas and I now that Sarah will be in school and I have one less child to concentrate on...  We are going to see a nutritionist and get on a healthy eating and exercise plan.  Both Thomas and I are overweight, and I know that it will be better for both of us.

So already the summer of 2013 is winding down.  The Sandy Hook School kids are spending another year in Monroe.  Thomas is going into the 7th grade and that means the Middle School.  Moving along.

Daniel...  Daniel just stays in his program at Reed School.  He isn't progressing along grade to grade...because he doesn't have a grade.  He just has "Daniel's speed".  The same bus, the same room...and all around him... new 5th and 6th graders.  I don't know how I really feel about that.  Is it the best thing for him since he is now almost 16?   But what other options would I have for him.  I don't know.  I need to know.   

And finally, there is little Henry.  Henry, who at this moment is 11 weeks old and 5 pounds.  Our little dog, who came to be with us in July...  who is in full blown puppy stage.  Henry is awesome.  I'm trying to figure out what the training is going to look like for him.  I suppose I had thought it was going to be somehow more organized, and yet I am confused as heck.  I am reading the books, and following instruction but he will be going to a puppy behavior class in September.   I know he'll make a great little service dog someday for Daniel, but  we have a long long way to go.   I have NO IDEA how to train him to respond to a seizure, or stay by Daniel's chair.  It's all a new and exciting adventure.

It's almost time to prepare for football again.  Thomas told us last night that he would push harder and try harder.  I just wish someone out there was in his corner.  All of those coaches are busy guys, getting the best kids into the best spots and preparing for games.  It's all about winning.  I understand that.  And for the parents who have those high speed athletic boys out there, always starting, superstars in multiple sports...  they have fun watching their boys play.   But the parents like me, who have a boy with a heart of gold, who never gives up, but feels disheartened, who watches quietly while his buddies out run him and go out to make plays.  He runs slow, but the doctor said the pain he feels is related to the diaphram... not the lungs,  Asthma is better...      We had one said therapy session where he burst into tears and said he is tired of being "the big slow kid".  So back then I began to encourage him back to better nutrition.   

Well...  a Mother's love for her son is very different than a father's expectations.   I have a son who will NEVER walk, talk, or play any sport, or walk in a parade, or go to college, or run a suicide or a sprint.   The degree to which I have to manage this, trumps out alot of things that I know I should be pushing.  Such as the athleticism of my son.  

And sometimes, I think about how my own heart gets sad and lonely and I know my boy is like me.  Surrounded by people who like you, but feeling lonely because you are so profoundly different.

I had always hoped that when Thomas went to the football field, someone would have talked with him, encouraged him, gave him an extra push, and extra shoulder.  Because he's had a hard life.  He's seen so much adversity and pain.  And he is only 12.   And he lives in it every day.    But like Daniel, I am apparently also the only one looking out for Thomas's happiness.   But I don't want to get involved with the sports, because I feel silly.

The music, on the other hand, I will do whatever it takes to keep that music flowing.  He is gifted, and in love with music.  Afterall, we all need a way to express our soul.  Even a 12 year old boy.

Daniel's little dog is asking me to get him outside to potty.  We will find a shady tree.

The lighthouse is there, I have NO DOUBT. But Depression will make you jump before you see it

today I have a million things to do but something is heavy on my mind.  Its Thursday June 19 2013.  Raising Daniel, in my life, has been a personal trial of ups and downs.  Emotionally, I have battled with my depression demons, at times it has even gotten to the point where I was almost lost to my sanity.  But deep deep within me a voice calls me out of this sad, dark and panic filled place. I pray for help. I talk and I write about the feelings inside me.  I make the call to my doctor.   I go immediately to seek medical care and counseling.  I have a flashlight to help me out of those dark woods, its batteries are called, Sarah, Daniel, Thomas, and Julie.

Or I have the image in my imagination of the ocean. We are a boat on the ocean and the world is filled with fog. Someone is screaming with anxiety and anger at me because I dropped the navigation tool into the water. As I pray and try to concentrate the frustration in the air escalates, buzzes, makes me dizzy, sweaty.  Then the swears and the threats. Someone kicks the side of the boat. I hold Daniel's hand and keep the inside piece of my brain steady. Steady. Eyes are focused, heart is protecting my focus. And there out of the darkness I see that lighthouse.  The frustrated passenger has long since jumped overboard.  It starts to rain and I have an image of that lighthouse guiding us in.  The children and I hovered over Daniel keeping him dry while we cry tears of joy.

I know that a happy life is not intended to be filled with negative despair.  No matter what you have or do not have, being happy is a choice. As I wrote about in the last two blogs.  Choice. Living a purpose driven life is our God given choice.  There is always hope when you have faith.

But sometimes, depression is NOT a choice. We can be depressed, just like we can have diabetes. It happens.  Regardless of the underlying causes such as childhood abuse, hereditary factors etc.  It happens. BUT ERGH!!!!  It is exasperating when I look at my life as a pursuit of great things, of love, of happiness, of friends, of family, of living the God intends us to live, of laughing, of joy, of seeing the beauty in life, of peace, of teamwork and togetherness.  And then once again, it happens, whatever IT is that falls under the category of either anger, pessimism, frustration, disgust, annoyance, avoidance, isolation, disappointment...  etc etc

I know we have all of these things in life, of course I know. I am seriously not that altruistic. But I do know that being able to forgive and surpass and continue on a road of resolution is what sets apart the dark from the light.  Yes, there is the "choose Happiness" reference again.

I am perplexed and astonished that I have turned a cheek to the depression in my home for so long.  There is no way to excuse or explain it. I am raising a severely medically fragile child, a teenage daughter and a 12 year old son.  Their mental health and emotionally stability is critical as life moves forward.

How can I provide them with the most love and support I can, if I face them with depression, anger, saddness, and hopelessness.  That is not, never will be, never can be a possibility.  I have goals, and dreams, and focus. I know who I am, and where I want to be.   But I have a spouse who is not on common ground with me.   How do we tell the difference between depression and abuse if the person never communicates what is in their heart?   I conclude that it is not our job to define the distinction. It is our job to protect ourselves and do the best WE can to follow the road out of the dark woods. Fast. Even run if we can.  Pushing that wheelchair, over the bumps, rocks and roots I will not let it get my innocent boy.

Look for signs of irritability and bad temper. Depressed men typically don't express their feelings. This leaves them feeling irritable and short-tempered.

Look for signs of withdrawal and isolation from other people. Depressed men tend to spend more time alone, watching TV, playing computer games, and pursuing solitary activities.


I am just Julie. Not a doctor. I can not  diagnose. What I can do is research, read, watch documentaries, talk to my therapist, be aware, and be informed. I know what the symptoms of depression are.  I know what verbal abuse is.  I have 20 years of journals that document these events, as well as the joyful events.

When you love someone , you want so badly for them to be your soul mate, your life partner but they are lost deep in a hole somewhere you just cant reach them.  I'm not sure what to do.  The hole is too deep and they keep taking your rope and throwing it back up at you.

So I've read that I need to take care of me.  Take care of the kids.  Teach my kids that they HAVE A CHOICE as to how they can proceed with life and there past does not have to define their future.  Choose Happiness, is the strength to make a choice to step out of our box and into a world of new and bright possibilities.

Some thoughts, and some facts.  If you have someone in your world who you feel is depressed but denies it, rejects it, is getting worse, and won't listen to you.  You are not alone.

Words can hurt worse than physical wounds people!!!!

Whoever made up that rhyme about “sticks and stones will break my bones but names will never hurt me” was just plain wrong! Words do hurt. They can break a person on the inside just as surely as a whack with a stick bruises the outside. People who are subjected to verbal abuse suffer. People who are subjected to it over time can get so used to it that they lose their sense of themselves as people worth loving. If you see yourself in any of these stories, know you are not alone. There are things you can do.

Some Things to look for, things that make you go, hmmmmmmm

·                      Irritability
Almost everyone becomes irritable now and then. The reasons are almost without number. A headache, a bad night's sleep, an upcoming dentist appointment, an unexpected bill -- any stressor can bring it on. But when there is no apparent reason why the least little thing becomes an annoyance, and the mood persists for days or weeks, look for depression as the cause.

·                      Anger
Anger is irritability pushed to an extreme. In depression, a person may explode over what might otherwise be a mild irritant -- or over nothing at all. It may be a brooding anger that comes to a boil over something seemingly harmless. If anger lasts or becomes frightening or violent, seek help for yourself or your loved one as soon as possible.

·                      Worry/Anxiety
This may present in a number of ways. For example, a person may seize on a few daily items and worry obsessively about them. Do I have enough sleeping pills? What will we have for dinner? Did I put gas in the car? Another form is responding to every issue with anxiety. I have to call the plumber -- what if he can't come today? I'd better leave early for my appointment in case the traffic is bad. Or it could be a more generalized anxiousness, perhaps accompanied by the racing thoughts that are more commonly associated wit

·                      Pessimism Pessimism means taking a negative view of everything. It's going to be another bad day. Nobody likes me. There's no point in applying for that job. In the case of depressive pessimism, the negativity is exaggerated all out of proportion with reality: There's no reason for it to be a bad day, some people do like you, and whether you're depressed or not, you might have a good chance of landing the job.

·                      Indifference
Simply put, indifference is not caring. The laundry piles up, the bills aren't paid, and you don't care. A friend calls with a problem, and you can only make polite noises or sit and listen silently, the words not really penetrating your shell of indifference. In depression, it isn't even so much that you don't care as that you can't care.

·                      Self-Criticism
Everyone has flaws -- but in this mood, your flaws seem magnified and you find flaws that aren't there. "I look tired today" becomes I'm ugly. "I've made a mistake in balancing the checkbook" becomes I'm an idiot with numbers. Forgot to feed the cat? I'm worthless. If you hear yourself or your bipolar loved one frequently saying overly negative things about him or herself, let it be a warning signal to you that depression is taking over.

It's important to know the characteristics of depression so that you can identify them as symptoms of a depressive episode when they occur, whether in yourself or in someone for whom you care or are responsible. Recognizing the symptoms as signs of depression can sometimes help to alleviate them; knowing what to look for means you can seek help that much sooner.h mania or hypomania. Anxiety is frequently associated with being indecisive..

So I am trying very hard to come to grips with this.  Because I love my children more than the air I breathe.  But I have reached the brink where I can't connect with the depressed person in my home.  They deny it. They won't take the rope. They won't listen. They won't talk. They won't try. They simply don't speak of it.  And if I "expect them to seek help, I am sadly mistaken."

And I turn focus back onto to the fact that I am raising Daniel, my sweet severely disabled angel, in a home where there is a spiritual battle going on.  This is a battle that I refuse to lose. I have given my worries and fears up to you Lord. You have continued to help me, to provide, to guide.  So Shall I.

When the day of reckoning comes, and they me to rest, I will be remembered as a woman who worked hard to foster the skills of choosing happiness and stepping upward and forward.  No matter what it took.

And that is enough for today my friends.  If you wish to comment or talk, I am always open.  Hugs and please remember that life is beautiful. We are all as important as the sun and the stars and the moon.

This is by no means implying that I do not love the person I am trying to help. I love him very much.  He just refuses to see my view.  Now, what do I do?  What do I do? I have to keep taking care of my beautiful children no matter what.  That's what. Tomorrow I will once again be saying, what do I do? But I will be a little bit stronger and smarter.