Naples, FL, Winter the dolphin, and a free Nexus 7!!! Exciting times, GRATITUDE

Well.  Tomorrow is graduation day.  And then we have a wonderful treat.  A relative has a condo in Naples, FL and she is sending us down there to enjoy the place and relax.  What a GIFT for Daniel because he will be able to swim in pools and the gulf waters.

It will be a God send to be able to just breathe deep under a palm tree in the sun.  We are not all going, but at some point around the 4th of July its looking pretty good.

Saying massive amounts of prayers that Daniel's current (yes, current...sigh) level of congestion will dissipate.

Have you ever watched the movie Dolphin Tale?  Well, if you have, you will know all about Winter.  She lives in Clearwater at a marine aquarium there.  She is a special needs dolphin who has an orthotic tail.

It has been my dream to bring Daniel to meet Winter in person.  It's about a 2 hour drive, and if we can afford to do it, we may try.

God has been good to us.  And boy will it be a relief to escape the pressures of broken lifts, bills, doctors appointments, and STRESS.  lol.

Many thanks to family and friends and this amazing town of Newtown.  Florida is a place where Daniel has much more accessibility and freedom to do the things he really enjoys most.

Getting there?  With all of his medical needs....well....that is the challenging part.  But having a wonderful place to stay thanks to a very special and kind family member who we love dearly....that takes the stress right away.

So I have so much to do.  Order a weeks worth of medications, organize equipment, figure out how much I can take on the plane with me.   I wish you could understand how challenging and crazy it is to fly with a special needs teenager.  It's definitely an adventure.  Know that i will be blogging and posting all along the journey.

OH....and in the mail, the other day, I also got a FREE NEXUS 7 tablet, because I switched to ATT.  There is nothing better than free gift with purchase.

And I passed my insurance license exam, so when I get back, I will actually be working part time as a licensed agent.


SO MANY EXCITING THINGS.   I AM CHOOSING TO BE HAPPY HAPPY HAPPY.  Stress is going on vacation too.

The Grawahhhhuation cap

Just want to mention that my daughter came home today with her cap and gown.  Graduation Day is Saturday, June 22, 2013.   We decorated the top of her cap, which apparently is now a traditional thing.

My little girl is getting ready to launch.    We will bring her brother to the ceremony on Saturday, I just hope he will be ok.  It's one thing to sit for three hours on a bleacher. Quite another to be in a diaper.

When you think about the fact that oldest child has really guided herself to this point and both academically and arts oriented.  It's pretty cool.   I can't wait to see her in that cap and gown.

Only two days away now.

I love my kids.

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.

Articles about choosing Happiness, too.

Choosing Happiness

It’s actually your choice

From Jaelin K. Reece

Did you know that happiness is up to you? 

It’s actually your choice.

You can choose to be happy instead of waiting around for it to suddenly appear out of nowhere one day and land in your lap. Happiness is called upon and cultivated.

I am the Creator of My Own Thoughts

Now keep in mind, this is my personal perspective of happiness. You might have a different view. Everyone has a unique view point, especially where emotion is concerned. But, nonetheless, I like my outlook on happiness. It helps me to see that I am the creator of my own thoughts and state of mind. It is my choice what feeling I choose to have on any given day. This does not mean I don’t go with the flow of feelings, but that I can choose at any given moment to change what it is I desire. 

For example, if I am having a hectic day, and I do have my share, I can choose to be breathless with activity or I can remind myself to stop and choose to be calm. I can go out for a walk and embrace the beauty that surrounds me and choose to experience that aesthetic as appreciation, gratitude, joy or numbness. I can choose to vacate and disconnect from my feelings, I can space out and be oblivious, or I can call upon the grace of the moment and be one with the beauty. These are all options.

We Have the Power to Choose

I think we as a society, collectively lose sight of how power-full we really are. I mean really full of power. We have the power to choose. It is something we are born with. No one has the power to take that away from us. It is our birthright. 

The key to owning that power fully, is to accept that you are a rightful heir to it. Knowing that you are empowered within to choose your emotion, to choose how you respond or react to something, is all up to you. It is all choice.

Choosing Powerlessness

Many times, our childhood experiences and life learning gear us away from our power. We learned to give it all away, to quietly accept whatever happens to us, without question, without standing up and saying ‘No!’ We have become a passive society of powerless and uninspired automatons, going along with the crowd. It’s a sad state of affairs that we have been raised in. Somewhere along the line, a standard was laid out and we are ‘expected’ to magically meet this invisible ‘standard’ by compromising and living according to someone else’s perspectives. Where is the happiness in that?

I guess that leads me back to my original statement. 

Choosing happiness is a choice. 

Anytime you choose, you are making a decision. You are engaging your power. 

Think about how you are feeling right now. How long has it been since you chose what you wanted to feel?

I am not suggesting that you go into a state of denial if you are in trauma, but I am suggesting that you insert a new option for yourself. Instead of sitting in pain, decide for 10 minutes that you will focus on happiness.

How does it make you feel? Are you lighter? Was a burden lifted? Even if it was a mere 10 minutes, it was a starting point. It was a choice. Would you rather go through life choosing happiness and drawing happy experiences to you, or by sitting in pain and expecting the worst, thereby feeling the worst?

It is still a choice.

It is your choice.

Why Not Choose to Experience Happiness?

I ask only that this stirs a thought within you. It is my hope that you will look at the power you possess and carpe diem – seize the day! Make a choice! Choose to experience happiness in your life.

It’s all up to you.

Enjoy – or not- it’s your choice.

Choose Happiness

June 18, 2013

You know, sometimes you look back on your life and wonder things... holy crap how did I put up with this for so long?   I know I do.  Something happens, and things go bad and I react but my reaction becomes muted by the fact that I do not have an ounce of "anger" in me.  That is good.  That is also bad.  Sometimes, you need to get mad when someone or something is trying to affect your choice, to be happy.   And that happened to me yesterday.

Taking care of Daniel for all of these years has been a self-less act of compassion and motherhood that I would not trade for anything.  But wound into the spiral of emotions were deep things in my past which made me numb to things that would make most people cringe, pack a bag, and not look back.  And then there was the post traumatic stress from Daniel's 2 month old respiratory arrest in my arms from RSV.  Followed by years of the revealing of just how severe his condition was.  One thing after another, set back after set back.

When I gave birth to Thomas I was 35 years old.  And still grappling with PTSD and hereditary depression. I immediately sought treatment, and strengthened my personal spiritual connection with Jesus, and made a choice that I was not going to be unhappy.   All the while, someone very special to me kind of did the opposite.  Walked into the dark place and pouted.  Left his glass half empty, so to speak.  Years and years of jourrnaling is very powerful when you go back and read them.

I am now closing in on 47.  My daughter is graduating from high school and I feel like I have cheated her out of a "normal" life by tolerating the anger and depression, while I treated my own conditions.  I don't know what is right or what is wrong.  I am deluged by the work involved in maintaining Daniel's life.  And Thomas's life.  And for the past 4 years everything Sarah needed from a parent, she typically got from me.  I have watched her grow up. She is the most organized person I know, and that is 100% self motivated brilliance because I am just too flippant.  Now she faces college, and new adventures and I have no doubt in my mind that she will grab hold and go for it.  She's smart, she's going to find her way.  I feel proud in many ways that she has stayed so focused and driven.   But I feel guilty in other ways that her heart is sad and she has anxiety about many things.    Here's my take on this.  We are all independent.  I made very different independent choices as a young woman than my sisters did.  And it was all driven by my own inner spiritual drive and positive personality.  Nobody gave it to me.  It was just me.  Just like Sarah's strengths, and Thomas's too...  they have inherent things about them that have nothing to do with their parents.  Yes, our circumstances affect us, of course they do.  But we ultimately have a choice with how we handle that.

One child could feel incredible anxiety and willingly go with Mom to therapy to talk and figure out where those feelings are coming from and how can they be changed or controlled.

One child could keep emotions bottled up until they explode out in random raging outbursts, followed by long tearful guilty speeches about what they said.    And then refuse to talk about it further, resisting help.

And you worry, until one day, you over hear your emotional bottled up child watching documentaries on how to live a positive life.  Reading articles about making a choice to be happy.  The thought comes into your head, gosh, that kid is just so smart.  Making a CHOICE to research how other people find their way through the chaos.

Every human being is different.  But as a Mother my biggest hope is that they will learn how to love. How to see the wonder and beauty in life. That they will learn, and grow, and ask questions, and dig deeper into the complicated quest for how to "be".   Asking questions, talking openly, communicating, writing, singing, playing music...  all of those things tie into our emotional journey.

I see them like this.  And they see me like this.  I choose to write, to network, and to pray.  However, I have learned a great lesson from my incredible daughter.  I stopped my journey to be happy many years ago.  I am happy as a Mother, but not as Julie.   Where are my friendships, my smiles, my laughter?  Where are parties and cups of coffee and having someone to talk to? Gardens are dead. I'm 80 pounds overweight and I let stuff happen that I should not let happen.  I have given up and become a zombie person.  All of my focus on caring for, tending to, managing, the kids.  But no focus on  my journey of staying happy.  Perhaps when you see so many "unhappy" people, you become like a drone.

Sarah has a shining sparkle in her eyes that has become more brilliant lately.  She is pushing through "it", and deciding to make her choices her way.  The problems, yes, they are there.  And the blame, well, it will probably always fall on me.   But my kids are not slackers, they are talented amazing people,

The reality is, none of us are really sure of the right way to handle ourselves all the time. Who is perfect other than God?   I see in that sparkle a young woman who is going to go off to New York City and open a door to a bright new world.  Because SHE is going to choose to see her opportunity as just that.   Sure, we all have personality flaws don't we?  You can work on those things, like anxiety, or fear, or communication.

Having that inner strength, that inner almost spiritual reserve that you pull from to help you make your choices is what helps people move along on a journey of love and happiness.  Choosing Happiness is not just a catch phrase, but something that we all actually have.   And if I have taught her, or nourished in her one good thing, its that she is strong enough to choose the path of a good and meaningful life. You have to step out of your comfort zone, and pursue the unknown.

.
Perhaps it always was meant to be.  I'm not sure where I have been quite honestly.  But my three children, well, I guess that's where I've been.  Julie needs to come back.  People who are sick, angry, isolating themselves, hurting others, not communicating, scowling, criticizing, threatening, and negative in their hearts.... those people do not know how to choose happiness.  Its very sad.  Its why people do horrible things, to themselves and to others. They go to a dark place, and they can't come back.

Sarah, Daniel, and Thomas all exemplify qualities of positive, forward thinking, problem solving strength.  Daniel, on a simpler level, but lets face it, he and I are mentally connected in ways I'm not sure I can write into words.

I found an article today, as I was browsing the internet.  And it made me think of Sarah.  And how she has been telling me, when I am crying or feeling hopeless, to choose happiness.   Choose Happiness. I love my children so much.

Explosion of thoughts from this Mother's head

June 12, 2013 5:15PM

Hi friends, if you could retweet for Daniel? If not no worries. Much love, Julie

http://www.gofundme.com/HELP-CHANGE-DANIELS-LIFE

After I tweeted and posted links to Daniel's fund.  So many fragmented thoughts exploded from my head like fireworks.  So I wrote them down. Random. But profound. I think it defines my life.

Tweets.  And Posts.  Articles and letters. Research and back up research.  Applications and appeals.  More Tweets. More posts.  Kindness of others.  Some who are not so kind. Doctors offices.  Calling and scheduling.  Rescheduling. Waiting.  Calling the on call doctor. Having to explain the health state of the child, again.  Bank accounts. Bills. Scratching your head until your hair falls out. Trying to work. Having to leave. Trying to work independently. Failing the certification exam. Taking care of other children. What's for dinner. Did you call Toyota yet.  What's the status of the laundry.  Paperwork. Get gas. Emissions is due.  College information. Graduation details. Dresses for parties. Dresses for proms. Football cleats = $100.  Special needs handsplints = $3000.

Wheelchair repairs. Diapers and gloves and wipes and pads and desitin and balmex and lysol. Clean the bathroom.  Charge the lift. Why does the shower sling smell bad. What's the status of the laundry. 20 year old cat won't use the box. Did you order my sneakers yet. Did you make my lunch. I want water, water to go, coffee for now and coffee to go!!!   What are your plans for the day? What did you do all day? Where did we get the money to pay for that.  Is there any particular reason why the dishes are not done?Drive to CVS.  Drive to CVS again. Football training camp. Music lessons. Occupational therapy. Physical therapy. Drive to Yale for GI clinic. Stool sample.  Need new probe for the pulse ox.  Your blood pressure is high. Order feeding pump bags and syringes.  Order Neocate. Did you call Toyota yet? Call the plumber. Fix the rotting window sills.  Drive to the pediatrician.  Call the school. Call the school again. Text the nurse.  What's for dinner.  Clip coupons.

Go grocery shopping. Get gas. Wash the car. Clean the house.  Clean the guinea pig cage. Feed the cats. Scoop the poop. Vaccuum. But new shirt and tie for the concert. Get instrument repaired. Need a new shoulder rest. Need new dresses. Need you to clean my sheets. Call about the medication. Talk to the doctor. Talk to the doctor. Go to the doctor.  It's time to go to football. I am broke. Did you call Toyota yet? Turn down your music. Call Dr. Baum to schedule appointment. Call teacher about the project.  Plan summer activities. Schedule vacation. Drive to dentist. Drive to eye doctor. Did you call Toyota yet. Send birthday cards. Send anniversary cards.  Plan graduation party. Do laundry.  Wash floors. Dust house. Clean bathrooms. Get more Bleach. 

You are snoring go into the other room.  Get off your computer. Lose weight and exercise. Get the mail. Buy a generator. Call the septic, chimney clean, chimney repair, crack in foundation guy, terminix, plumber, electrician.  What is the status of the laundry.  Try to work. Have to leave to pick someone up. Try to take the test again. Have to reschedule 5 times.  Cry alone in my bed. No one needs to hear that.  Do the budget. Cry after doing the budget.  Check on Daniel. Make sure the monitor is working.  Pump is going off. Need to re-prime. Why is he crying.  Why is he sleeping so much. Mom we have to go to football. You are always tired. You should go to the gym today.

Mom I need you. Mom will you go upstairs and get my "...".   Review IEP goals. Determine what additional therapies will help Daniel.  determine what he needs. Find ways to acquire them. Choose happiness. What is the status of the laundry. Why does she have to use our shower. I don't like the candles burning. We can't have anything nice.  Call the doctor. Go to CVS.  

Take medicine for pain and depression. Drink more coffee. Schedule things in my calendar. Make lists of things to be scheduled in my calendar. Have a nice time at the pool.  Yes you can go to the gym.  I don't know where your headphones are.  Daniel is having a seizure.  How do we do the diastat i forgot. Call 911.  Pack an overnight bag just in case.  Call the doctor.  Take some advil.  What is for dinner.  Did you call Toyota yet.  Take a pill.  I won't go to therapy if you don't like it call a divorce lawyer.  Do you want a treat?  Tinker threw up. Time for Football.  Take something out for dinner.  Look for a job. You should take care of yourself.  Call Thomas up for bed. Tuck me in.  Put me to bed.  You snore go away.  This place is a pigsty.  Don't touch my stuff.  I am tired. My back hurts. I don't feel good. Leave me alone.  What is the status of the laundry. Empty the dishwasher.

It's time to go to football.  I love you Mom.  I emailed my guidance teacher. I can't take the hostility. What's wrong with Daniel.  I rely on my Mom. Go to CVS.  We should be back in church.  Get money.  Study for test again.  Reschedule again.  Concert. Audition. rehearsal. recital. lesson.  Drive to CVS.  The lift broke.  Call the technician. Go to the dump.  What is the status of the laundry.  I love you too Thomas.

Dinner?  

Julie Hasselberger

Sick Daniel and Lockdown and how much more stress do we need???

June 10, 2013.  What a day this was.  I'm in my bed reflecting on the day.

Daniel's on another day of extremely high fever and I am NOT happy with Connecticut Children's Medical Center Gastroenterology.  They never returned our calls today and gave us direction.  It's exhausting and one of the main reasons why I am pursuing care at the GI clinic at Yale New Haven Children's hospital instead.  When your child is sick, it is imperative that the specialists call back, at least within the day.  Daniel is very medically fragile.  I'm exhausted.

And then, as I went to get Thomas from school they called to let us know that our schools in Newtown were put into lockdown due to a threatening call made to one of the schools.  I had to wait a long time until I could get Thomas out of the Reed School.  He had some anxiety and was upset.  It's not easy to crouch and hide quietly not knowing what is happening.  He told me it was flashbacks of how they were on 12/14.

Thomas and I went to Panera, sat down and talked over a snack, he's ok. And we are both just happy that no one was hurt.  But in the faces and nervous chatter of the parents waiting for the kids to be "un locked" you can feel the underlying nervous energy.   It will never be the same here....and the memories of those parents waiting that day at Sandy Hook School for their kids, will continue to haunt our hearts.  I know my children are safe at school, but then again, we can never be too complacent.

I know Daniel's vital signs are ok.  But then again, I can never be too complacent.  Life is full of  uncertainty. And as I've been dealing with some stress over the future and the present I have been guided by some dear friends back into the arms of faith.  We can't control our future and what happens.  Horrible things could happen at any second.  But we can step out on faith and choose happiness over fear.  Choose love over hate.

All of the images of 12/14 came flooding back into my head today as I waited for Thomas.  And I said a prayer for every parent of the angels who also received that call today knowing very well that there must have been some very anxious tears.

As I am curled up here in my bed sick with a fever, like Daniel, getting ready to sleep for a while until the nurse has to go home, I am surrounded by my most favorite things.  My favorite blanket. My cat. My pillow. A view of green forest through billowing curtains. Pictures of my children.  And I know that somehow all of the problems that haunt me will continue to haunt me if I continue to let them.  All day today I prayed, and told myself that I was not going to freak out over money, or pressure, or emotions, and that I would continue to reach out to touch other hearts.  And continue to try to get back to who I was before.   Because for many years I have been in a lock down myself.   My personality, my dreams, my love, my  heart, my laughter, my energy, my enthusiasm, my deepest faith, have all been locked down and suppressed.  I know this.  And it's the fear of other people's anger and disappointment that has made me turn myself into a human robot.  Until at moments I go on modified lock down, and let myself have a little bit of Julie to share.

Some day I will be free to be able to hold Daniel's  hand and run through the surf at the shore.  We will walk with God in Heaven. No one will make fun of me there, or tell me what I SHOULD do.

I am not sure why Daniel is sick and miserable again.  But I am completing this entry because I was told by someone here that I must sleep because I will be the one up all night.

Please pray for the wounded hearts that were opened with today's events.   Pray for healing and for love.

Julie Ann Hasselberger

The REAL truth part two ...continued...

Real Life Testimony:  (no more data, this is becoming a reality Blog now.......anonymous quotes received from people all over the country.....    How has having a special needs child affected your financial state, family, health, etc.  

June 9, 2013 (long) when xxx was first diagnosed I was called into the General Manager's office and asked if I were going to be requesting Accommodations now that my son is "ill". I looked at these men like they had five heads. And said.. "I HAVE NOT REQUESTED ACCOMMODATIONS" and left. Then I reported it to corporate HR. I was the HR manager at the time. Over the next few years, little by little, it happened. I was removed from the succession plan. I was criticized for coming in late, but never praised for staying late. We were self insured and Daniel was on my insurance, and I saw the claims. They would make write action plans on how we were going to reduce claim expenses, very well knowing my son at the tme was the biggest one. So many exasperating things happened. Then I got pregnant with Thomas. Still intending to work, because aside from management the rest of the company was awesome. I had incredible reviews and raises. Went above and beyond you know. All the while stressing about xxxxx. Had many friends and great colleagues there. They were NOT happy when I was pregnant again.

 This woman xxxx who was alot older than me, and DID NOT believe that women should work when they have small kids, blatantly would bully me and say how wrong I was to be working... putting my kids in daycare.. etc etc. And it was like that. I went on maternity leave after baby #3 and suffered a bad post partum depression. I needed a few more weeks to recover, and my boss was ok with me being out longer. Then that same old bag started calling me at home. saying she was "wondering how I was"... all the while my little spies would tell me she was talking smack about the fact that I wasnt there. I had an AWESOME assistant at the time, who was keeping me in the loop. Finally, I returned to work, had hired a nanny.... things were good. But Senior Management was snubbing me. We had an aquisition, and by all due process I should have been conducting the due diligence, and working on the integration and termination situations with the company we bought. But they gave the entire project to that lady. She was the HR manager at another sister company. She despised me by then. Non stop criticism that I was a working Mother, and worse that I was not caring my special needs child.

 I tried to be as professional as I could, but one day she barged into my office with our VP and they put me on "suspension" I had to leave at that moment. They said they were investigating some issue with the Accounting Department. I had NO IDEA WHAT THEY WERE TALKING ABOUT. But again, my spies out at the coprorate controllers convention had outright heard them talking about their "plans" to get rid of the HR manager. And it included the cost of xxxx's medical bills. And three days later, after basically NO INVESTIGATION TRULY HAPPENED. I was called into HER OFFICE at her creepy other company and the VP said that a "memo" was found in the accounting managers personnel file. My name was highlighted on the bottom. It said that he was not in agreement with accounting practices. They said he told them that he had talked to me. That was a blatant lie. I had never seen the memo. Anyone could have put it in there. Even my assistant had never seen the memo. And that VP looked at me and said.... sorry....we are terminating you, you can go across town and clean out your office. Now mind you, I really did not have much to do at all with the front office accounting department. They set me up. They also fired our controller. But when I went to clean out my office, the mean discriminating old witch was waiting for me with boxes. They gave me an enormous separation package...WAY MORE THAN WHAT THEY WOULD OFFER IF THEY FIRED YOU FOR CAUSE, THEY EVEN MADE A MISTAKE AND PAID ME EXTRA ON TOP OF IT, AND THEY NEVER REQUESTED IT BACK, SAID THEY WERE JUST GOING TO LET IT GO... they said that I could sign and agree not sue or not receive a penny. I went to a lawyer. She spend alot of time with me. I had hoards of evidence, because from the moment xxx was diagnosed as disabled, I started documenting. BUT... she also said it would cost me alot of money and emotional struggle, and did I really want my job back?? I talked it over with my husband, signed the papers, took the money.... And the HR Manager ME, who loved her job, and her family,  became a victim of discriminatory firing. I tried for a year to get another HR job, almost did many times. And then, my son needed major hip surgery. It was all too hard. I had spent a year job hunting and being with my kids....and I had a reality slap. THEY NEED ME HERE. Daniel needed me there. His needs were ever changing, and the number of doctors was growing. The corporate world has NO PLACE for our need for flexibility. And mine surely didn't. If I could do it all over again, I would never have gone into Human Resources. There is no way now that I look back that any place would have been flexible enough for the hell that I went through with my son.   It has been ten years since this happened.

June 9, 2013 This post caught my attention. I have two children who are five and two. Our two year old is medically fragile and we have spent most of her life in the hospital. My husband and I both work, but I have always earned the main income. Last year our daughter was so ill in the hospital with severe feeding intolerance and on TPN that I had no choice but to take a medical leave from work. I am currently working part time from home to cover bills, but my employer is not able to extend any further work situation from home. My boss told me last week that I needed to choose to between a full time job in the office or no job. I completely understand the employers necessity. However, with a special needs and medically fragile child I do know how long I will last working ten hours a day four days a week. I will try my best to work full time and put everything in Gods hands. He has been my guiding light. The other issue I face at work is that the girls in the office who have taken some of my responsibilities during my absence do not want me back. I was told last week that if I returned, hours would be cut from one of my colleagues. I feel that they are bullying me. When I walk into the office, they treat me as if I don't exist. My boss has no interest in me returning either, other girls in the office have told me. It is sad. I am exhausted just working part time from home. We have days that are very overwhelming too. If I get out of the house it is to go to Children's Hospital for appointments or Walgreens for medications. I wont give up for my girls, and I will do the best I can. I have been blessed in the last two years and every time we think we are facing the impossible, things work out just fine.

June 9, 2013 we are also a single income family, my husband works in construction and gets as much overtime as he possibly can which sometimes means an extra 20 hours a week with him leaving 5:30 in the morning and returning 8:00 at night. My lil man wont stay with anyone else, wont even let anyone other than me feed him so at this point there is no choice of me returning to work, as we had originally intended when I was pregnant. Also, as a result of my husband working extra to try to keep us afloat we just received a letter from SSI saying they were cancelling my sons benefits and want us to pay back the past year that he has received, not that he got a ton but we dont have that kind of money. Just kills me that if you are willing to work for it they dont want to help you... my husband could just as easily turn the overtime down and we could just collect government money but we dont deal that way. We also have a 3 yr old daughter who started preschool this year and they have found ways for me to put in volunteer hours so that she could receive a 50% scholarship. WIC also wont help give him the types of food he needs, for example since he turned 2 they said he has to be on low fat milk, but he is underweight so he needs the fat from the whole milk... after telling him that they just took the milk off all together. I spend countless hours fighting for things for him with these places and with the insurance company... just doesnt seem fair that these kids have to fight hard enough yet alone having to deal with being denied that what can help them.

June 9, 2013 big (((HUGS))). xxxx has as baby sister who is almost 6 months old now. I worry about what it will be like for her. I know she is loved and we will always do our best to balance their lives, but I also expect it to be difficult, especially as they get older. And I know what you mean about what finances may look like on paper. And God knows how you can have been in a financial position in the past, and are now stuck trying to juggle things because your circumstances (like losing a job) have changed. And you are right, with the current real estate market, it would be so difficult to change your home situation. I pray for you and your family. 
June 9, 2013 i dont have a life, we are isolated at home or separated by the hospital, i feel like crap worn out, and my husband work work works. ive been doing tis 5 months. hope we get skilled nursing care so i can get out once a week.

June 6, 2013 lifestyle whats that??? lol...ours went away about 5 yrs ago lol..now its just the basics .

 June 6, 2013 It's also the long term can/if my child can live on their own, if not who will be there when I'm gone? The fear that without us as parents nobody will care for them in a respectful way. It's not just financial it's all encompassing, who will make sure they have the correct med? Who will remind them to eat healthy, who will carry the burden when we are gone?

June 6, 2013 Oh and by the way, I don't want to hear any complaint from people who have to pay a hefty college tuition. We pay college tuition rates year, after year, after year....

 June 6, 2013 As you are well aware, it puts an enormous financial burden on the families. We had a $2000 prescription rider on the family for any one person. XXXXX blew through that in a month and a half, and then it was all out of pocket for us. And when you pay 20% of hospital bills when they are so high, we are talking thousands upon thousands of dollars. Of course this puts an extreme strain on the couple. We were lucky enough to make it though still loving each other...but we had some really rough years there ourselves. And XXXXX only lived to be 4 years old.

June 6, 2013 I agree, you deplete everything you have to do the best you can for you child and you envision yourself as an elderly couple at 95 (if heaven help us we live that long) years old and working because you don't have a retirement.

June 6, 2013 I think our costs have about evened out with medicaid helping. Although we do have to travel MUCH more for our day care. Overall cost with our 4 year old to date would certainly be in the 7 figures, if we didn't have insurance or were under-insured and then Medicaid we'd be hundreds of thousands in debt by now. We miss a lot of work which causes some instability. Once in a while I feel like my whole life is a house of cards and the next puff of wind is going to send it crashing down. We manage but it feels like we're surviving not thriving quite often. Our 4 year old boy is 100% disabled, immobile, g-tube, zero developmental benchmarks, has regular seizures and prognosis is terminal. BUT... He is so sweet and beautiful, never complains, smiles, he's an angel.


June 6, 2013   in my case, my childs father passed away when she was one month of being 5 yo, I paniced big time, she draws social security survivorship from her dads death now, I have since remarried to a wonderful man whom thinks of her as his own, his world literalJune ly revolves around my child. because of my new husband, I don't have to work thank you lord for that, although I do work as an office manager once a month for extra money and to get the office file system and scheduling organized. I spend (this week) 3 days driving 2 hours one way to the childrens hospital, an average of 2-3 times a month same distance to appointments. Which the gas prices these days is killing my wallet there, the county is helping with gas vouchers, nothing from the state uughhhh If it wasn't for my husband now I don't know what we would do, no family support at all, and we live check to check as well, not eligible for food stamps or anything, therefore hubby and I go without just so kids get what they need...

June 6, 2013 exactly, the way SSI works is you cant ever be comfortable or they assume you dont need the assistance. but look at how expensive EVERYTHING is for these kids. we live check to check, are always behind with bills, live without alot of things, its just hard, theres never any comfort at all, because you just never know. and it takes FOREVER to get things covered by insurance most of the time. it shouldnt be this difficult to be us and live the lives we live. theres too much red tape and too much bureaucracy to deal with.

June 6, 2013...My first financial wake-up call was when I was looking for 10 hours a week ABA for my 3 year old son. Insurance covered nothing and I was quoted $800-$1000 a week for 10 hours of in-home ABA. AND there was a 6 month waiting list. I don't know anyone who has that kind of $ around.

June 6, 2013 My husband and I have just spent hundreds of thousands of dollars creating our own group home for our son and two other young adults with Autism. We started when he was 19, finished when he was 21. Between this son and our other two kids post high school educations we can't catch our breathe financially.

June 7, 2013 ...Indirectly financial... We decided not to have a third child because we don't know to what extent Dom will need our resources both financial and time. We want to make sure to give him as much as we can!

June 7, 2013...divorce.I work part time time to help cover some costs of living but can only work part time because of the time needed to dedicate to appointments and follow up (education/medical) for my son (with pmg) - not counting what my other children (2 of them) require.  My daughters lives have been affected by their brother, on a day to day basis and my son's father is in denial.

June 7, 2013 It has crushed us financially. It has been the downfall of my marriage. 

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   June 7, 2013 I was talking to a mom the other day and she said that anything that really is effective isn't reimbursable. Im a music therapist and I fight with insurance all the time. When it comes to reimbursement, CT is behind the ball! As moms we just have to continue to fight for our kids no matter what. I hear you though, it strains the family, the marriage, and the pockets.

  June 7, 2013 My marriage is stronger having a special needs child~we realize it takes both of us to raise him!!!! Financially~wow where to begin~we decided that it was best if one of us stayed home~so there is so much we struggle with but very fortunate that I have a very good job with great benefits. Not sure we will ever be out of debt but we are happy! PM me if you would like more info.

  June 7, 2013 We can barely afford to pay our mortgage and will probably lose our home. This has destroyed us financially and emotionally.  Without support from church, friends, and family we would probably be on the street somewhere.

  June 7, 2013 before xxxx was born, I homeschooled all our others. That left a lot of money free. When she was about 14 months, I started having panic attacks about juggling it all. So we made the extremely difficult decision to put them in school. The high schools in our area are not good, so we put the two oldest in a wonderful private Christian school. It has been amazing for them, but the cost is staggering for us. And because of all the incidental costs of raising Sami, that don't appear on paper, we make too much for financial aid. 
  Emotionally, last year I had 4 children in 3 different schools, all with their activities and volunteer needs, most of which I can't do. So I completely understand that mommy guilt. 
  My son is almost 16, already has his own car, which needs work that we can't afford. My daughter babysits a lot, and has to borrow a phone because hers broke and we can't afford a new one. That same daughter is turning her few pairs of jeans into shorts because she really needs new clothes, that I can't afford. The kids want to do activities, like piano, voice, dance, sports, that I dole out like gold because it all costs money. 
  xxxx and I don't go on dates much, or getaways at all. We look for free things to do as families. 
  I recognize that we are so blessed compared to others. We have enough to meet our needs. There is much less than there used to be and there is much more stress. Money stresses me out. Spending quality time with everyone is stressful too.Emotionally, last year I had 4 children in 3 different schools, all with their activities and volunteer needs, most of which I can't do. So I completely understand that mommy guilt. My son is almost 16, already has his own car, which needs work that we can't afford. My daughter babysits a lot, and has to borrow a phone because hers broke and we can't afford a new one. That same daughter is turning her few pairs of jeans into shorts because she really needs new clothes, that I can't afford. The kids want to do activities, like piano, voice, dance, sports, that I dole out like gold because it all costs money. Luke and I don't go on dates much, or getaways at all. We look for free things to do as families. I recognize that we are so blessed compared to others. We have enough to meet our needs. There is much less than there used to be and there is much more stress. Money stresses me out. Spending quality time with everyone is stressful too.

   June 7, 2013 Finances- we just accept the fact that we will die with no money and that's okay. We are 54 and 47 with 8 children. We spent our equity from our home to adopt our 4 children and we have very little if any money. This was a choice and we feel that although money is important its not the end all. Giving children a family is more important. (our SNs kiddos would have never survived if left in the orphanages) Money-its over rated. I think folks would be shocked if they knew how little we have. Given our ages and the amount of children I think folks think we have money. LOL

  June 7, 2013 My biggest challenge is being able to make life for my other children as normal as possible.Of course it is not like others, as we, as parents usually have to divide and conquer. Its hard for us to both be there for our other childrens events at the same time. This is the one thing that I find difficult. On the flip side...my other children are growing up with a compassion that most other kiddos don't have. That's the challenge we face daily. (aside from the stress of watching my son struggle with issues like breathing) I currently have 6 younger children living at home as well as one adult child still in the home and "time" to date each one individually has become a tougher thing. (usually my adult son gets jipped) As far as hubby and I, we are grateful that we both put our kiddos first.I do miss our time alone but its very bearable when we are "together" raising these kiddos. I think having SN child/children teaches our other children that "its not always about them" since we live in a very self centered world. Not sure if this is what you arelooking for but this is what I thought I could share. PS I am VERY tired often from lack of sleep. Ice tea is my best friend since I'm not a coffee drinker! LOL

  
  

  June 7, 2013 My daughter passed away at the age of 5.  We were financially devastated and bear the pain that we could never get what she needed in order to have a better life. She would probably still be with us.