Daniel goes to a Christmas Party

Something happened on facebook today

Shouting out thanks, for special gifts received!

Weekend part two, shopping, dog park, silliness

The Tree is Standing and it is huge

warning 18 year old with Whooping cough

Getting discharged, time to go home

Improvising Thanksgiving and having fun with hospital masks

I told them it was Whooping Cough!!!!!!

Urgent Care for two please

Daniel's "sick" happy birthday

Great job sitting Daniel

Keep your mind off your pain

Welcome to Our Channel

I have Shingles, week in review

National Championship Fun and exciting results!!!

Halloween Dog Party and Exciting Band Competition

Daniels story Part 2 the later years

lets snuggle Mom

Bed

How a depressed person thinks:

Lately things have been rough for me. In my head. In my mind. When I have money stress it pushes me down a dark tube into depression. Because I can't do regular jobs like most people. Because my disabled child may be fine today, nut not tomorrow. Because I had a job but now they can't pay me and I'm behind. A lot.  I am helping Sarah go to Italy for school. No matter what it takes. No matter what else has to suffer. She gets a class credit for going and she is a brilliant kid who deserves it.   So I will somehow make the payment.  But it's the rest of life that has made me want to retreat to my bed.

Everyday when the kids are off to school and John is off to work, I have coffee and it's lonely and dark in the house. Except for my animals. All I want to do is go back to bed. Today, I did. I would still be there if I didn't have to pick up Thomas. 

I feel like my situation is too hard for me to manage. I can't find my superwoman cape anywhere. Maybe there is crypto it's under my house. But all I want to do is sleep. I can't go shopping (no money) I should be going to probate court for Daniel, cleaning, cooking, scheduling appointments, calling equipment suppliers, exercising, looking for a job, being.happy jovial person.  There are so many "should be doing things". And John adds to my list, you can fold the towels today. Ok. I brought them up from the dryer.  But I don't feel like folding. I don't feel like eating. Actually I had an apple today and it's 2:38pm. And I am not hingry at all.  Considering I'm a fat person this is highly unusual. 

My bed has lots of pillows. And soft lights above the headboard. I can block out everybody in my bed. Henry stays with me and snuggles. I should be put walking.  Today it's raining so I guess that wouldn't have happened.

I should be praying for help or calling a doctor about my psychosis. But I'm just numb.   I'm tired of trying to do the money and th money never being there. I feel hopeless because I worked for a month and didn't get paid. The bank says I am overdrawn. I don't have a debit card.   I'll never go into the branch again. They were so rude to me last week. 

Nothing is perfect here. This life doesn't fit into the square Holes of regular normal people.  Daniels mic key button clogged this morning. I cleared it with a tooth pick. 

I can't remember the last time I had my hair colored. It looks awful. Really awful. I think it's been 3 days since I showered. I will shower later because I feel gross. I am gross.  My job told me not to come to work anymore right now. Money is tight. It's tight all over I guess.  Except for the Mom I am looking at in the parking lot of my sons school in her Giant fancy Lexus sport utility. Chatting on her phone. Her nails are amazing and she has gorgeous hair. I wonder who she is talking to becaus she looks happy.  I'm a grunge pit.  My pants have bleach stains and my sweatshirt is torn. I used to like to dress now.  Now I just wear old clothes. 

My bed. If I went back there right now I would fall asleep instantly. It's all I really feel like doing. It's pouring rain outside. 

Thomas is helping the middle school band.  Sarah texted me that she got an interview with CBS.  

There are so many things I should be doing.  Join wants me to apply for full time HR jobs. I don't see how that could work. But he's adamant that it should go back to how it was before. Back before Daniel was medically fragile and I made a lot of money. But it's different now.  The stress is greater. 

When I go out I pretend. Smile. Look happy.   I have $10. Extra bucks. I should go buy some chocolate. And go home and go back to bed. My favorite time of the day is bed time. I love my bed. And al my pillows. I feel loved and safe there.  I'm waiting in my car. For Thomas. It's raining. I just want to close my eyes and sleep. Right here. In this car.  But I would prefer my bed. 

Daniels story Part One

Respect the toad, day in the life Sunday

Henry loves the dog park

I love you Daniel

Emotional day in my life

Rehearsal and a snuggly cat

Back to campus after Fall break, the NYC drive

Furry Animal love

Daniel in Special Physical Therapy session

The worst side of the house

surprise gift in the PO Box and a grumpy hubby

surprise gift in the PO Box and a grumpy hubby

Am I wrong to think the way I do?

I am a 49 year old Mother and wife.  When I look at my kids I see some pretty amazing talent and ability.  What is life really? Too short not have a grateful heart every day.  Too short to spend days obsessing over negative things that will never do anything but harm your health.

Is it a fault that I like to see beautiful things, even in places where beauty is questionable to some.  Is it wrong to believe that karma does exist and that finding a slip of paper on the side of a country road that says JOY in hand written blue ink is NOT an accident?

Life is a tumultous road of tedious stops and starts.  Chores and maintenance, money and medical.  Things that are "the right things" or things that are "the best things" or simply not knowing what to do.

I am like a little kid under a gigantic pile of papers trying to unstick myself from the mess.  Sit down.  Get yourself together Julie.  Make a list and organize yourself.  PLAN.  How can you not have a plan.

The zig and zag of relying on other people to move you along the road of life is a precursor for high blood pressure.  How are you supposed to work and have sanity and job security when you almost without a drop of doubt will have to leave or not even come in at least twice a week.  And then there are the hospital stays...don't get me started.

The world and status quo of the financial instituations in place for individuals to live the the American dream does not apply to famlies with a child born with a severe disabilty.

Money is the one thing in my life that makes my heart beat too fast, makes me panic and worry, forces me into corners and gets me so afraid.  When the bank account gets low, I am literally terrified at the thought.   Because there is never enough of it.  And all I really want to do when I'm stuck in those dark logistical practical places, is run barefoot along a beach or stick my hands into finger paint and just go bonkers on a piece of paper.

I don't know all of the politics on TV.  I don't know what is happening with the financial markets.  I don't know the intricacies of foreign affairs.  But I do know that I know my son's medical needs like the freckle pattern on the back sides of my hands.   It is virtually impossible to engage in the sophisticated adult world when you are doing breathing treatments and changing the diapers of an 18 year old.

Just wanting to let go and experience the love that is my son, while he is here.  And yet the phone never stops ringing, and the mail is stacked with "issue" containing envelopes.

How is life supposed to be?  Sometimes I feel like I'm guilty if I talk about choosing happiness and light.  Sometimes I feel like people close to us want to help, but not get involved on a personal connectivity level.   What I need most is love and compassion.  But money is a required part of that.  or not.  I don't know.

I often feel an identity crisis.  The way I removed myself from music. The way I isolate myself from the social life I once adored.  The way I ignore the health of my own body becasue I spent tireless hours caring for my children.

As I write my eyes are closing into what feels like oncoming sleep.  I don't know what tomorrow will bring.

All I know is that when I'm tired I should sleep.

Remember when we met Carl Banks? and Shout Out to Liz

something special happened

More sickness, hanging tough

Fitting into the realm of "normal"

Fitting into the realm of "normal"

Fitting into the realm of "normal"

Fitting into the realm of "normal"

Labor day parade and very loud crickets

Daniel likes Katy Perry

Special deliveries and wonderful surprises

Special deliveries and wonderful surprises

calming down

Sick

Therapy was emotional, and we have BATS

Come on Fellas show us your bacon

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

Silly grocery shopping and a trip to Neurology

The day the seizures came back

I am really feeling beaten down, but not giving up.  I keep praying that somehow, someway, we will get ahead.  I have to take care of this kid.  I did a survey, and most people said that they would need between $100,000 to $200,000 to change their lives.   For me, $52,000 would put me in the position to fix up the house, sell it, downsize, put money in the bank, stay with Daniel and concentrate on his needs, get my degree finished and move south in 4 years.



So I don't know how I am even going to get myself through today, never mind will $52,000 into my bank.  But I do not want anything fancy, I just want a life that isn't going to kill me with a heart attack.



I just have to keep hope in love and stay at peace in my head.   Today, this morning, I woke up and the car Sarah uses had a flat tire.  Seriously?  I just had to laugh.



Life is insane.   I am praying that our you tube channel will spread and grow, because ultimately it will help earn money, as it works.  



One other interesting thing, I heard from an old friend, Kim, whose son Collin used to go to school with Daniel.  She went through the same ordeal with the insurance cancelling Collin's services, and her story is in the paper today.



It is ridiculous...  the way our kids are treated, its as if they just don't matter to the world.  Makes keeping hope even more important friends.



IF I LOSE HOPE WHAT ELSE DO I HAVE???     My John has been incredible lately, as have my children.  We wrap around eachother like a warm blanket because at the end of the day, all that matters is love.

Not a very welcome home, 2 broken down cars

Going Home Day, Travelling with the family

Barefoot Beach and a really nice day

The best time of my year, is when I can be at the beach in Florida.  Letting all of the stress and pressure go...  just for a brief spell...   It comes back 10 fold, especially this year, when we returned home.  Ugh.  Our lift van transmission went!!!

Daniels day at the beach

"What do you want to do today?" dilemna on vacation

Sarah arrives in Florida, our Naples adventure week 2

Please come to You Tube and subscribe to watch all of my videos



Life told thru the lense and from the heart.

Vacation is ending

I am laying in the semi darkness as the sun will be coming up soon. It's July 4 2015.  Tomorrow we head back home to CT from Florida and it's always a tough thing for me.  I do miss my Henry very much, it's been so hard not to let it make me depressed. So that will be nice.  But it's Connecticut in general that makes me weary.  The house I can't afford to repair and the cars too. Too much to clean. Working hard all the time and fighting the ridiculous depression. 

The culture, people, and climate down here changes me and after 10 plus years of staying here I know I am done with the North. 

But regardless of what my heart says or how well Daniel and I both do physically I am aware that vacation ends and there will be that massive pile of mail and that long long "to do" list when we get back.  

Thoughts on June 20, 2015

It is Saturday night, and I've been scrambling all day to get packed and ready to go.  Up until yesterday I wasn't sure if our vacation was going to happen.  And I guess that is pretty typical of how life with a disabled and special needs child is.

Daniel had surgery to have a Baclofen Pump placed inside of him, on June 4, 2015.  This is a procedure that helps to reduce spasticity in the muscles.  Daniel's spasticity issues were getting so intense that I wasn't sure if I could manage him on a plane, etc.  It was time to move away from the "oral" baclofen medicine, and to what they call "intrathecal Baclofen" .  so off to the hospital we went for the surgery.

Everything went well, and aside from a couple of complications, it seems to be working really well.

This morning I had some sort of a mental meltdown. I'm not sure what it was really.  But as I sat staring out into my backyard I felt tears streaming down my face.  This is journey is a tough one, and as optimistic and positive I try to be, and try to move myself towards being, sometimes it still just downright sucks.

The State of CT Husky medicaid people are trying to take all of Daniel's skilled nursing care away.   It's complicated, but essentially some person at a desk somewhere in Hartford has looked at Daniel's file and decided he does not qualify and is not medically qualified for on going nursing intervention through out his day.  They are proposing to end it on June 27, 2015.   Daniel DOES received nursing intervention all day long.   They are making me jump through hoops like a monkey.

So here I lay, falling asleep while I write.  Wanting so badly to spill out some devine words of wisdom, but I can just say that we are on schedule for vacation.  I'm really really sad to be leaving my Henry behind, but I think a break will do me great.

Great.  as I wait to find out our fate with the nursing care.

I am also very thrilled that my You Tube channel has hit over 1000 subscribers.  I hope that if you are reading this, you are also a subscriber.  I think its weird, but I honestly have NO idea if any of my family members (except my mom and sister) actually follow us there.  Most of the comments, and interactions are from the You Tube community.  Perhaps people are just still so new to the concept of vlogging.  I'm not sure.

Time to get some sleep.  I have to wake up at 3am.  Yes I said 3 am.

Olease keep coming back. Life is great.

Julie Hasselberger  June 20, 2015
.

14 HOURS IN THE ER, READMITTED, MUSIC AND THERAPY

Baclofen Pump Surgery Day June 4, 2015

The day before Daniel's surgery June 3, 2015

The day before Daniel's surgery June 3, 2015

Challenges and Blessings of having a special needs child

Special Day in Lower Manhattan

I am Julie Hasselberger.

They asked me for a "bio" and this is what I wrote.  Today is Thursday, May 21, 2015  

I am Julie Hasselberger. Mom of three children living in Sandy Hook, CT. I have a Bachelors degree in political science and an MBA with a concentration in Human Resource Management. In 2003 I left the full time corporate career world because my severely disabled child needed my attention, advocacy and care full time. I am outgoing, I love people, love music, and love God. I am a Christian and I believe that we have Hope through our saviour. Needless to say, my life is a daily struggle full of challenges that can be very overwhelming. I am always trying to get healthier, and that too is a tough battle as Daniel is just getting bigger. I love my children, Sarah, Daniel, and Thomas more than anything in this world. I have been married for 22 years to John Hasselberger, and marriage has its challenges dealing with differences in opinion and different personality issues. I've dealt with severe depression and anxiety for years, and I a true believer in "choosing happiness" NO MATTER HOW HARD.

I started vlogging regularly about a year ago to share my journey and my story. Its been a wonderful experience. My vlog is my main source of enjoyment these days, because I am capturing the daily life of my crazy family.

Life as a Mom to a severely disabled child is very isolating and lonely. You feel disconnected and on another planet all together. I cry ALOT but I laugh more.

I love to make friends... and its funny how I basically spend actual time with, none. But I have found so many friends who want to be there for me in the You Tube community and through my Special Needs support groups.

In life you never know what to expect. What matters most is love. It can be challenging when people who are closest to you dont "get you".... and the bills certainly have NO MERCY for people caring for disabled children in their own homes, giving up their lives for their children. Welcome to America.

Life is beautiful. Despite all of the negative people around us, the negative world we live in, we can choose to grab each moment and value it and love it. Live for now. Because the reality is truly this, all we have is what is now. The rest either is in the past, or in the future. One is gone, and the other is unknown. Love eachother now. Right now.

Mothers Day Creative Cupcake eating

Early Bird and Round Robin

When Will That Desk Be done???

Saturday stuff May 2, 2015

Exciting day Friday

Epic Cookie Fail

Epic Cookie Fail

Too Many Thoughts in my Head. Using Mindfulness.

Secret Sister Unboxing April 2015!!!!!

To Baclofen pump or not to Baclofen pump, that is the question

Yesterday Daniel saw Dr. Cruz-Zeno, who is a pediatric physiatrist.  He specializes in rehabilitation medicine, and he is one of the doctors on Daniel's team who has been seeing him for his entire life, since he was about 6 months old.

Daniel has been through so much, and his current amount of muscle spasticity is, and has been for awhile, a big concern.  He takes a medication called Baclofen, which helps to manage the spasticity, or tightness, of the muscles.  Unfortuneately Daniel still has periods of time when he goes into these complete and total spastic "fits" I guess I could say, for lack of a better word.

These are Yo Gi Bo Pillows.  We would love them for Daniel at home.

The Baclofen activates directly at the spinal chord level.  So the oral baclofen that he takes, takes a while to be ingested, and get to where it needs to get to.  There is another way.  It is call "Intrathecal Baclofen administration"  And essentially, they surgically place a pump into his body, which will administrer the medicine directly into the spine.  Its a more effective way of controlling the tone problems.

Daniel with his buddy and therapist Adam

Daniel's spinal surgeon has given me the name of a Neurosurgeon at Yale New Haven Children's Hospital.  So I will be calling for a consultation.  They can actually do a test run to see if this method is appropriate for Daniel..  Because of the amount and placement of Daniel's spinal fusion hardware in his back, it may be extremely difficult, if not impossible to place a baclofen pump into Daniels body.  But it's worth a shot to look into.

I have been procrastinating in my mind with this Baclofen issue for about 6 months.  But, as we were getting ready to leave the doctors office yesterday, Daniel went into the most extreme demonstration of high tone and spasticity that I have seen in a long time.  So the doctor got to witness it.  It took his nurse and I a long time to even get him back into his wheelchair.

This process is long and complicated...  this process called managing Daniel's medical care.  I'm exhausted right now, and have too many things to process.  Somehow I need to find a method for organizing myself in a better fashion towards goal attainment.  I don't have a literal second in my day, for myself.

This time I am spending, right now, on this blog is my one hour between when Daniel goes to school and I have to go to the next thing on my schedule.  I would really just LOVE to relax for a couple of hours and watch you tube, make videos, and manage my planner.  I need a better planner.

This is me and how I feel every day

So who knows what tomorrow will hold?  I don't even know what the next hour will hold.  All I really know right now my friends, is that I need another cup of coffee.  And an appointment with my psychotherapist before I mentally go wonky.

Peace and love until next time!!!   Please come to our You Tube channel, "Julie Hasselberger"

https://youtu.be/hunnIPWj1Eo

Taking Sarah Back horrible traffic

Respiratory scare and a new addition to the family, for Thomas

Hunting Chipmunks and finding a Ben's Bell

Please don't leave without saying good bye

I think that it is so important to any relationship, mother child, husband wife etc  to kiss and hug goodbye each morning and kiss and hug hello. 

I woke alone with Henry by my feet and my husband and younger son had left for the day. Daniel was sound asleep.  I sleep in a small bed in a room by myself, with Henry my dog.  I can't sleep in my own bed because I snore.  I have been told that I can sleep there any time I want, as long as I don't snore.  

I can't ever make such a promise and I have repeatedly caused him great stress in the night with my snoring. So I don't sleep in my bed.  He snores too but I don't mind it. Funny how that is. 

So a person who needs to be comforted and loved sleeps alone in punishment to herself because of snoring. The doctor says I snore because I am too overweight. I don't feel like I will overcome that. 

But at the very least I asked him and my so to please always say goodbye before you leave. I was thrilled when he said he was sorry and would do so for now on. He said that he loved me and just didn't want to wake me.  The next day he came and kissed me goodbye and I was so happy that he understood. 

It only happened that one day. I woke today and everyone was gone except me and Daniel. Henry was sleeping on my feet. He is such a source of comfort. And I had to get up and take my meds and drink some coffee by myself.

The sun is peeking through the clouds and the birds are singing. I gave myself a hug and said a prayer.  So many of us are just not on the same page in life.  

Always hug and kiss those you love when you are leaving them for the day. And coming home from the day. 

You never know.  So now I face my day. 

March 31, 2015 and good bye to March but why is it still snowing...

All I can say is that this has been a long and cold and snowy winter.  It snowed today.  And yesterday.  I don't know about other people around here, but I am so DONE with that stuff.

My head hurts and it just feels like I need to spill.  So much, every day, and how I accomplish things is really a mystery to me.  I just go into some magic portal and transform myself into a mystic being I guess.

From homeowners insurance to medical bills.  From medical bills to mortgage modification applications, from applications to tax returns, from tax returns to FAFSA forms.  And then, hi ho, hi ho its off to the doctor we go, to see Daniel's spine and what has now been determined to be a large cyst on his tail bone area.  Doctors, dentists, eye care, home repairs, house work, WORK oh yes, I have work too.  When I can get there.   When I can't go to work I feel guilty because I know it is an imposition of great magnitude to the place that I work.   Get the picture?  Anxiety now.  Not sleeping.  Trying to do mindfulness and prayer.  And a friend sent me a nice suggestion of making vlogs about things I am grateful for, I like that.

But honestly, to be me, is the equivalent of being many different people all working on multitudes of levels all of the time.  It's more than a Mom juggle when you have a child who is completely dependent upon you for basically, his complete survival.

I'm eating too many cookies and my hair looks like crap.  I can't stay on a diet for the life of me, and I am supposed to because my sugar is too high.  I want to scream and run around the house like a crazy loon, but I'm too tired.

Just when I finally establish that it is OK for me to go try to sleep....  the dog has to go out.  So instead of into bed, I go outside into the cold.

And that is how the cookie crumbles.  Crap.  Now I want cookies.  It's just hard folks.  Very very hard and I am pulled and yanked in a million very necessary directions.  I'm only human.  I break down.  I get depressed. I pull up my boot straps and keep on keeping on.

If it would just STOP SNOWING.  I can't even think about Easter, nor do I feel like doing anything holiday related.  Why am I holiday phobic now?  I think because its just one more gosh darn CHORE to add to my already overflowing bucket of overflowing.

Rest and relax would be nice.  I just don't want any more anxiety dumped on my head.  Opened up the mail to some major medical bills for all of my blood work, and almost did the crazy run.  But there was just no time for that, no time for showering either.  I had to hurry to bring the baritone sax to the middcle school, drive to Norwalk to see Daniel's doctor, and race back like a crazy nut in a big big van to get to Thomas IN TIME after his lesson.

And for a half an hour Daniel screamed in the van.  I stopped and ate McDonalds.  and then I hated myself for it.  But I was starving and stressed.   This is why I am fat.  I am sick, exhausted, stressed, lonely, frazzled, addicted to food, and unable to delve into anything that is self help related because it is just too much for me to swallow.

F you snow.

Daniel gets back x rays, lazy night Chinese dinner

Daniel gets back x rays, lazy night Chinese dinner

Hospital fun and piano time with Daniel

Daniel and Singing Olaf!!

A small shift in perspective

I am definitely not any kind of a complete expert in anything.  I get "spazzy" and have to calm myself down. Things upset me, and sometimes I cry randomly. I know I annoy people, because I annoy myself.  But, I really care about people, and I'm limited in how to manifest that into "real" sometimes.  I am busy.  Very busy with the chores and duties and things required for caring for my wonderful family.

But when life grabs me in a bad way, and I get all negative, and feel like relationships are failing me and I'm a lost cause, I always seem to remind myself of a couple of things.  Number one, if you stop being positive there is absolutley no way you can have positive results, so, self talk "stop it Julie, don't focus on his/her/its negative issues but shift your perspective.  Like, my husband takes incredible care of himself to keep his cholesterol down, he wants to be phyiscally healthy.  I think his athleticism is really pretty remarkable because I've never been athletic.  or, He gets these amazing reviews every year, and raises happen,  even when not everyone is getting them, he has a good job and works very hard at what he does. (Quality Engineer for Breast Imagining equipment company) and what he does at work, helps to save lives.  Thats pretty cool.

When something is really biting at you, shift your perspective, let it go.  How hard is that, to let it go?  It's not really hard when you just shift your perspective just a little bit.

Number two, Be present in this moment.  Stop. Breathe. Breathe again, slower. Do a mindfulness exercise and get your brain to slow down, and JUST BE.  Just breathe.  Find some inner peace and block out the noise in your brain.  Physically, your stress diminishes, your mood improves, and you can accomplish so much more, or nothing at all.  But be present in the moment.  and Let it go.

and Number three, forgive.  Forgive yourself for being critical of others and yourself, and others for hurting you, forgive and it flows right into the "be present" thing.  The only way to inner peace is to be able to forgive and move forward.  Holding grudges, and resentment only hurts the person who is holding.  We hurt ourselves by doing this.  Forgive, and find more reasons to love.

It certainly is not easy, to do these things in this terrible messed up world we live in, but its totally possible to be happy and to choose to be happy.

Even more IMPORTANT is the ability to develop the COPING skills that you need to engage in when you do get stressed out, angry, freaked out, hurt, resentful, and so on.  Finding a way to redirect your mind and your soul, back to a place where you can choose happiness.

Sometimes I read what I write, and listen to what I say, and I really don't like myself.  It is because I have this knack of just letting it all come out when it happens. Like a big whining and complaining baby on a rant at life.     But in doing that, I discover who I am, and who I want to be, and don't want to be.   I am perfectly happy with the fact that I am NOT perfect and have alot of my own personality flaws.  I very proud of myself for seeking help professionally when I feel I am incapable of choosing happiness.

Take the worst thing about yourself, and replace it in your brain with the best thing about yourself.  Do that with your husband, kids, dog, whatever.   A small shift in perspective can change your world.

It's complicated.

Things are complicated.

Isn't that a funny statement, really.  I mean, of course things are complicated.  Most things in adult life are.  But some things inherently by definition are supposed to be smoother and kinder.  When a man and woman love each other, and they have a family, and many many years together, it should be a time where talking about almost anything is simple, easy, comforting, like putting on your favorite slippers on a cold morning.

When she has to worry about making him angry, and she has to be careful and meticulously pick and choose what she says and does just to please him.  But sometimes something triggers the illusion to go through another part of the funhouse of mirrors and smoke.  Underneath the feet are the shards of broken sea shells, egg shells, and all shells.  Because if you crack them you make noise and you seem to make a lot of noise. Noise is bad.  Noise is very very bad.  Quiet is peace.  It is also fear. Listening, as if you were in a dark forest with no light alone and vulnerable.  Waiting.  Heart pounding.  Vigilant. Then the sun comes up, and you find yourself in a meadow.  And you are laughing together, and hugging. Your mind lets you feel warm, and wanted. Things are clearer, and focused. Going places, doing things, loving, laughing being human.  Until.  You become so complacent, and you push too far, and the frustration comes back. The distance returns. And just about every 2 to 3 weeks a huge angry explosion over something you don't quite understand.  Who screams at their wife and their kids. Who breaks things?  Fear.  The moment the anger re enters, she feels a large lump go down her throat and it becomes hard to breathe.  All previous warmth escapes as if a window was opened on a freezing cold day.  And he's mad, disgusted, annoyed, or some other form of reaction to something you did, or the kids did.   Then he goes to his quiet place. Hours sometimes days.  Goes to work. Goes to the gym. Comes home. Does some laundry. Watches wheel of fortune, the news, and goes to bed. Repeat cycle.  And she doesn't know what to do. He shuts her out. There is no talking about things.  She tells her therapist, but without avail.  Because the cycle has been turning for far longer than she can even remember.  Takes care of the kids. The dog. And waits until he changes again and returns telling her she "over reacts", that he was "just kidding" and says "gimme a hug".  She is spinning like a little girl.  Like the time she was spinning in the Atlanta Airport just spinning, and she was lost.  Maybe he is right.  Maybe it is all in her head.  She over exaggerates.  She should be able to take the anger and absorb it, without letting it hurt.  She pretends this to be true. And he is nice to her, flirty, but still distant.   After 10 years of therapy, and countless books, articles, and videos everything tells her it is not in her head. That husbands don't scream at wives like that, sarcasm and threats, even things like "I'm gonna take Thomas to the diner for Breakfast, lunch and dinner" because she didnt go grocery shopping.  Said in anger.

She knows there are many journals filled with feelings.  Feeling of love. Feelings of pain. Feelings of happy times. then back to the low low desperation kind of pain when she just wants to wrap herself around the kids and fly away like a giant bird.  Feelings of, "marriage is hard, right, but you have to stick it out. get through the tough stuff"  Feelings of wondering if men all act this way, getting ANGRY, and then going for a week or two being quiet and withdrawn, a spell of intense happiness, and then some small thing lights the fuse.  Repeat cycle.

Oh for sure, there is a cycle.  She has been watching and documenting it for years.  And in a very strange way she knows he will never work with her.  He will never admit that the anger is wrong, or that anything he does is wrong.  He actually hollered at her in front of his parents, and she was the ONLY one who stood up against it, they all just look away.  And he yells at her again as she tries to leave the room, tells her she is TOO SENSITIVE and OVER REACTING. AGAIN.

And she works really hard to get Daniel a scholarship at the Y.  He gets to swim again.  They bring him in.  It is the very first time, in many many months possibly that he has lifted and held his son.  Swimming is great for Daniel. It is a bonding time between parents and son.

Things are complicted.  Yes. Yes they are.  Its called welcome to the life you think you dreamed of always having only to be given a life that wasn't on the order form you fill out when you placed that ring on your finger.  But things change an evolve.  The kids get older.

Not knowing what to say.  Not being able to just completely be yourself. Feeling like a failure because of things like "dinner being after 7pm" or "not finishing the laundry she started".

One minute, loved, the next minute left.  They go to sleep, in separate rooms.  He says her snoring is unacceptable, she needs to listen for Daniel in the night.  He wakes up and goes to work, without ever a hug or kiss goodbye, she rarely even sees him in the morning. He just goes.  In the early days, they would never leave eachother without a hug and kiss.  It was important.  They would sleep together, and kiss goodnight.  Now he watches TV and she sits on her laptop.  He doesn't care that she isn't there in the bed, doesnt seek her out, unless he is in the mood for "what husbands and wives do", but after that is done.  The distances comes back.   Its so frustrating for her.

Wanting to be held.  Talked to. Respected, Loved. Valued. Laughed with. Snuggled with.  It has been a decade since someone held her while she slept.  She misses that terribly.  He tells her to get off. Move away.  

It's complicated.  Old love and memories still floating around inside, but the pain and fear of the anger coming back, because it always comes back, are haunting demons.  Tip toe through the egg shells. Find the warm meadow, sometimes, he's there and loves her.  She has this child who needs her.  So much has been sacrificed.  So much of who she really is inside herself.  He doesn't care or see it.  She prays, and prays.  Starts reading psalms, and books again. Starts vlogging and writing again.  Because she fears that one day something really bad will happen.

How does she tell this man, who she is married to, that his anger, sarcasm, short tempered ness, and criticism are wearing away at her soul.  He just says she over exaggerates. Over analyzes.  and after the pain wears off, she starts to believe him.  The worst things can be said, with never an apology.  So she turns to God, and facebook, for some kind of confirmation that she is actually a good person.  She knows she is a good mother.  But maybe she is a bad wife.

Its complicated.  And the cycle repeats.  tWriting this entry, she is in the little bed in the extra room, while he watches TV.  He will fall asleep.  She will too. And the lonliness will stir up some dreams. Still dying to be held, touched, hugged, and loved she grabs a pillow, and the dog curls up on her feet.  Human closeness is so important.   She is thinking too much.  Tears are starting.  She wishes he would love her as if he cherishes her.  She prays that he would start listening, and communicating as a friend and partner again. But he rarely listens, and when he asks a question 9 times out of 10 he actually walks away before people answer.  The kids try to be good kids.    But.  It's complicated.

It's all complicated.  She knows another therapy session is coming.  So at least there will be a place to let out all of the feelings that she has.

And she realizes that today she missed her son's pulmonary appointment in Hartford, and that's not good.  She went to work instead.  Feeling quite numb.  And quite sad.  And quite depressed.

Perhaps tomorrow will be a fresh start!!!!  Perhaps things will burst into life and he will get help for the anger, and work on the marriage and plan the rest of their life growing old together.  Perhaps.   But, its complicated.

ANOTHER Sunday snowstorm and fibromyalgia flares up

Wonderful news, so proud

Crazy Sunday Morning

Crazy Sunday Morning

Minions!!!!!

Daniels Special painting and crafts, Thomas goes to ER

Winter Storm Juno PART ONE

Special feet and a Blizzard is coming

Naughty DOG!!!!

SNOW DAY !!!!

Lovely polite children eating cake

2015 Goals for my new year

Well, looking back at the results of your prior year you can say to yourself... "WOW I HAD A GREAT YEAR", or, "man. the year went by and I really didn't accomplish anything significant. it just was."   I kind of feel like the latter.  When you are fighting depression and dealing with fibromyalgia it is mind boggling how fast time just goes by without focus.  That's one of my big challenges, focus. Focus is hard when you have to completely focus on the care of a special needs person.  Focus on yourself as an independent human being, even tougher.   I have a few things that I would like to list as my hopes, dreams, goals, resolutions for 2015.

1. Go back to church.  We have fallen away from regular church attendance and I miss it.
2. My health. I am seeing a naturopath and pursuing healthier living habits. Pain relief strategies such as acupuncture and massage.  Nutrition and wellness that is focused on my needs and my goal. 
3. Henry, It is my goal to have Henry trained as a therapy dog before the end of 2015.
4. Work. I would like to be able to pursue my nursing degree, or at least start looking into a job in the health care industry.  Dreams can be achieved. 
5. Friendships. Try to get myself out of the house more often (than never). and reconnect with the human race
6. Pray more. Join a bible study. 
7. Exercise regularly (like I used to, but stopped)
8. Be more assertive with getting things that Daniel needs, researching help and grants, etc.
9. Focus on gratitude.
10. Set goals, visualize them, and move towards real dreams!!!!  
11. Make the hard decisions that need to be made without being afraid. 

I used to be a leadership development trainer, helping people with strategy and goal setting.  What happened to that corporate positive lady???  

A special needs mother, who has been caring for this wonderful child, tends to realize that over the years you lose yourself.  Sometimes I even feel like I have become invisible to others.  I have lost my identity and need to find and keep those parts of me that have slipped away.  I have been shut down by a life of depression and negativity coming at me all the time.  It's time for me to take back the joy that is rightfully mine. 

Thank you for all of your prayers and caring hearts.  So many people reached out to be friends, and helped in 2014.  I want to feel happy and vibrant again. That is my 2015 goal. 

A 2014 year in review from my perspective

Looking back on 2014.  I'm sure there are things that will pop into my head later and need to be added.  Definitely big big highs and big big lows.  This past year has left me thinking that I dont want such a blah kind of 2015.  Changes are already in progress...  for the better.  For me this time.


January 2014. I recall that on New Year's Eve we simply ate some snacks and went to bed, pretty much the same as this year.  Sarah was home most of January, just like this year, but I think she was really bored and having a rough time of it with John.  She really worked on her You Tube Channel alot.  It was very cold.We took Daniel to see Frozen on New Years Day. I talk about wanting to see a new doctor for my pain, and I found one at Yale.  It didn't really work out though, because it was far, and hard for me to get to those appointments.  I was suffering from sinus infections, the same as now.  On January 30 I posted on facebook that I was sick with 101 fever.  My old Dell computer died.  I know I was incredibly depressed because I continued to journal about it.  We saw Saving Mr. Banks, and I sobbed like a baby in the theater with Sarah.   January 2014 was not an extraordinary month by any means. Just cold. Filled with the same old stuff, Daniel's medical care.  Paperwork up the Kazoo. Relationship problems and anger/depression affecting us.   Didn't spend any time with friends or have any dates, or honestly, I can't say there was anything all that interesting.  Working when I could for AllState but wishing so badly that I could go to nursing school. The highs and lows, and alot of trips to CVS.

The Lindsay Foundation in Texas sent Daniel a new Convaid Stroller!

Sarah started her sophomore year living on the sorority floor.

February 2014.  February.  Thomas turned 13 on February 25, 2014.   Daniel started seeing Adam Granger, at Summit Neurological Rehabilitation in Brookfield.  He had his first assisted walking experience in years.  This therapy was amazing for him, but not covered by his insurance.  I had a grant from The Umbrella Club, and had sessions with Adam until the grant ran out.  Henry continued to attend Dog Training classes and had his first grooming experience. There was snow.  There was cold.

Daniel began aggressive therapy to strengthen his body and legs, March 2014

John's new 2011 Honda CRV

March 2014.  Our old 1999 Ford Winstar died.  We replaced it with a 2011 Honda CRV that was in excellent condition and had only 7000 miles on it.  First new car in over 10 years.  John drives it.  On March 19, 2014 Sarah went to get her hair cut and got front bangs!!  I dealt with a broken XBox alot, there was cold. Snow. Depression. Alot of doctors appointments and clinics.

Sarah spending alot of time in NYC, seen here outside the Metropolitan museum of art

Julie meets Wendy from Ireland for the first time!!  April 2014

April 2014  I think the highlight for April was meeting the Hendricks family when they visited from Ireland!  Daniel, his nurse, and I met up with them at the Bronx zoo.  Wendy and I have been friends on line through the Polymicrogyria support group since Daniel was 4 and Daire was born.  For over 12 years. It was amazing having the chance to spend the day with her and her family at the zoo.  Thomas continued to excel at playing the Baritone Sax and Trombone.  Sarah was at college and pledged into her sorority. John continued to have periodic intense periods of anger which are really rough on me.  Daniel had a period of illness that I thought was stomach related and we ended up at Yale with Pneumonia for a few days.

Easter Sunday at church, Mom and Daniel

May 2014.  Thomas, Jazz band competitions.  He had so much fun in his first year in Jazz band at the middle school.  Many doctors appointments.  My neighbors across the street got a new dog, a labradoodle. Sarah finished up college for the year and came home.

June 2014  Thomas finished up school for the year and we went to Naples Florida for 10 days.  That was the highlight of my year I think. The moment I touched the warm sand and saw palm trees.  We had continued relationship ups and downs and our family was not exactly normally functioning.

July 2014. Thomas attended Danbury Music Center.  I turned 48 years old.  Started therapy in Newtown at Newtown Youth and family services. Struggling with sinus issues again, back and forth to the ear nose and throat about 6 times.  Sarah made me a wall hanging that said do more of what makes you happy.   It is one of my favorite things ever, because its true.  I was really starting to shift away from the way the anger makes me feel, to trying to find myself again.  I love summer.  Daniel was invited to cut the ribbon at the opening ceremony for the new playground in Newtown.  Our friend Marc Pintel was the main donor to the new playground, so we got to spend a little time together and meet his son Spencer.  The playground is beautiful.

Handy Dandy Handy Man tshirt and hat

August 2014  Thomas started Marching Band Camp. Daniel finished up summer school. Sarah went back to college to begin her sophomore year after working for a few weeks here at Target. Money is tight, and when our washing machine broke, my good friend Peter Brady of the hand dandy Handyman Ministry helped us out.  We received a new washing machine from Lew White Appliances, and some additional financial assistance.

Thank you Lew White Appliances in Danbury!

September 2014.  Daniel and Thomas went back to school.

Thomas amazed everyone in his first year in the marching band 

We watched alot of marching band competitions.

October 2014  We had our 22 wedding anniversary.  Had a quick dinner at a place in town called "The Newtown Kitchen and foundry". or something like that.  My sweet friend of 22 years, my cat, Tinker, passed away at the age of 22.  Lots of doctors appointments. Still feeling very depressed but wanting to see a new doctor for medicine management.  We also had a wonderful time at a New York Jets Game, thanks to our friend Marc Pintel who bought us the tickets.  It was so much fun for the family!!  and for Marc, who made a sweatshirt and sweatpants honoring Daniel.  We loved Met life stadium.

Tinker Passed away at 22 years old. Oct 2014

November 2014  Sarah turned 19.  Daniel turned 17.  John turned 48.  We had Thanksgiving here at our house and it was very nice.   I started playing my flute again for the first time in over 30 years! I am so proud of myself.  Purchased an old open hole flute on Ebay too!  Thomas's gift for music, and Sarah's too, has finally inspired me to step back into it.  I think all of the therapy is finally starting to pay off.  Even though the anger eruptions continue, I can't do anything about him.  But I certainly don't have to spend my life feeling sad, and guilty for not meeting his expectations of me.

December 2014.  In the beginning of the month Daniel had a serious bought of diarreah and it turned out to be C Diff.  He was very dehydrated, and we were in patient at Yale for several days.  I was just very relieved when he was better and well enough to go home.  I did all of the Christmas shopping also drove to Staten Island to get Sarah.  In a storm!  That was not fun.   Relationships continued to be tense and difficult in the house, and John hates Christmas so I did all of the shopping and prep work.  I tried having as much fun with the kids as I could.  The end of the year came fast.

Daniel won Ugliest Christmas Sweater at Best Buddies

John took Daniel skating

I am sure there had to have been some profound moments through the year 2014.  But sadly the dominance of "walking on eggshells" maintains its control on my life.  But I have to be strong and care for the children, and this year has to be all about me getting stronger and healthier.  I am tired of feeling depressed, and suppressed.  I miss friends, laughing, having time to just be myself.

December 14  2014 the kids and I met our beautiful great niece at her first birthday party!!!

So that's kind of life in a nutshell.  Me and my little dog, Henry.  Me and Thomas talking music and driving all over Newtown.  Me and Daniel bonding, and having our special times. Doctors, medicines, appointments, supplies, endless paperwork, and sleepless nights.  Me and Sarah.  My special special beautiful daughter, who keeps me up to speed, inspires me to make You Tube videos, amazes me with her intelligence, and is there for me always.  I love my children in a million different ways.  They are the highlight of my 2014 because they love me, just the way I am.

our 2014 Christmas tree