Easter 2014 This is my story... (+playlist)

Physical therapy for Daniel and Thomas goes to the "moon"

Thomas Hasselberger is Daniel's bro.  He got to come along and try the zero gravity treadmill!!!!!

Daniel had pneumonia the week before this session took place, he was somewhat weak, and appeared to be having some pain.  This therapy is great for him, even though he has to work so hard to try and move his feet.  

Physical therapy at Summit Rehab is not covered by Daniel's insurance, but Adam Granger is so awesome.

I continue to try and find ways to make Daniel's quality of life greater. His legs really want to move, thats for sure.  Each day is a challenge.  I'm trying to work on my You Tube Channel, and share and connect with people.  Surviving this type of uphill battle is exhausting.  But I am the Mom here.  The Mom who loves her children more than anything else!!!

I want to get back to publishing more blogs as well.  Been busy trying to work at AllState a little bit.  Not nearly enough though.  But I try.

Have a wonderful day!!!   Please check out my channel and subscribe, I am currently up to 33 subscribers!!!  very small.  I need to grow.  

Love, Julie

Julies world from normal to mom on duty

Sunsets are beautiful, even from a hospital room

This is my blog.  This is my world that I write about. I am Julie Hasselberger.  Daniel's Mom.  Today is April 2, 2014 if you can believe that!  Honestly, I couldn't be more thrilled to see this past winter get lost. It was awful. All winter I raved about how well Daniel was. His strength was so impressive and not even the slightest cough or runny nose.  Daniel started new, and more aggressive physical therapy at a great place called Summit Rehab.  The past year and three months since his spinal surgery/pancreatitis has been completely without incident, illness wise.  Perhaps there was a slight seizure, but his brain is a wacky mess of electric inconsistencies, so thank God for the seizure meds.


Daniel recovering from pneumonia 4/2/2014

Today, Mom (me), renders me watching him sleep from this hospital room at Yale New Haven Childrens Hospital.  This story goes something like this. Had a great day Saturday.  Sunday morning he was retching, gagging, and trying to vomit. If you know anything about the gastroenterology world, Daniel has had a procedure called a Nissen Fundoplication. The Nissen actually prevents vomiting and reflux, with the intent of saving him from aspirating his own body fluids.  But when he feels sick and wants to vomit, he can't without tremendous force.   OK.  All day Sunday March 30, 2014 he retched and gagged.  He started running a fever.  He wasn't tolerating feeds, not even a drip of pedialyte, so long story short I called GI. And first thing in the morning on Monday headed down route 34 in wet slippery snowy slush to the Yale ED. 

Spent the entire day in the ED at Yale.  Had two visits from a lovely therapy dog named Jerry.  There is something wonderful about seeing a large furry friend in the middle of an institutionalized setting.   Especially when you are sitting in a room from 10:30 am until 5:30pm, just waiting.

Therapy Dog at work in the ED



Jerry the therapy dog at Yale

The Special needs Mom lesson for today is, you can not live in a world of complacency when you have a child like Daniel.  Viruses happen.  Aspiration happens.  When the good times come, like the long wonderful periods of great health, grab that boy and hug him like there will be no tomorrow. 

Dogs bring love. No matter where you are.




Raising a disabled child is a completely different journey that most people in "normal" families can ever imagine.  Every step, of every human life journey is unique.  But these special children bring challenges and changes that can destroy a person, or build a stronger soul.



Arriving at the ED....sick

Miserable guy

Non-verbal children try so hard to communicate with you in whatever responsive way they can.  For Daniel it is eyes, facial expressions, touch, crying, biting. 
  Cozy in a hospital bed





Trying to communicate with Dad through touch

 

 

The sunset is remarkable sometimes, no matter where you are.  This sunset on April 1, 2014 was spectacular from the 7th floor of Yale New Haven Childrens Hospital.  What a beautiful gift.

 

It feels as though the world has slowed down, or even stopped "paying it forward", or "being kind", please don't let it stop.  There are many people hurting, needing, and alone.  I will end this post by saying that I've been wondering for 3 days what is wrong with the tiny baby in the room next door that just cries and cries. 

 

Be blessed friends.  And now I go back to being "hospital room Mom" .  I will try to increase my blog posts.  Life sucks me out of all the things I enjoy. But I find my way back to them.

 

Julie Hasselberger  4/2/2014

many moods of Daniel

)

Daniel Summit Rehab feb 27

Moms misery

In this journey called life, sometimes you find yourself not well. I have been struggling with so many ailments over the past few months. Sinus infection being the worse.  

Tonight I have a roaring headache. I am aching all over with sharp painful twinges. Lifting Daniel is tough. Focusing is tough 

I am starting to think i am losing my mind. But I know I am not. I just wish someone would help me.  Help figure why I ache all over. Why even my elbow bones hurt. Exercise they say. So I try. Eat better.  So I try.   

I am on Effexor, Wellbutrin, Klonopin, lyrica and tramadol.  Endless advil. It's a pretty strong bunch of meds. But when I ask if they can cause any of my symptoms I am told probably not b

This is a Mom who wants to get better. I'm sick of feeling sick. I have been febrile since November.  Oh well. 

Tomorrow is a day of new chances to heal. 

Julie's random thoughts

Sometimes I wonder what it will take for me to flip the trigger and push myself even harder on all things.  I feel too complacent. Tonight I watched "my 600 pound life" and I was mesmermized by how those people struggled.  I certainly know that I have to lose some weight. But I relate on the issue of food addiction.  I guess I just have to keep trying. 

I'm suffering from extreme nauseau and migraine headaches at the moment. Since about 5:00 ish I have felt sick. 

It's no picnic. 

The air is bitter and another Nor Easter is set to hit tonight.  I am hearing about a foot of snow? It's life in the winter world. I suppose we just have no choice but to cope. Find the fun in it.

I just really want to feel better.  It's been months of feeling ill, feeling nauseau, the fibro pain, and horrendous headaches.  The doctors send me round and round in circles. 

Daniel and I will have our day tomorrow. As there is no school.  Then in Friday I take him to Yale Children's Hospital for an appointment with endocrinology. 

And the calendar is full of appointments and therapy all being juggled and changed because of the recurring theme of "winter storm warning"

I'm cold tonight.  My boys are all sleeping like babies. John, Daniel, Thomas and Henry. 

Winter really is a reflective sort of month. But it imprisons you as well. I stepped out and joined the gym club 24. But I have not gone yet.  What is wrong with me?   

For tonight, as the cold air takes it's grip, just remember to keep praying.  People need prayer this time of year, it can be a real downer. 

Me? Julie Mother ? I know in tired when my eyes keep closing while I type this.  

I am so busy all day that sometimes my mind goes jumbled. It's a new day saeaZ. I'm CCDs.  That nonsense was the result of my Klonopin kicking in to put me to sleep. 

I

Grateful hearts, prayers, loving gestures and soup

Today, is February 7, 2014

As a Mom I am often finding myself 
in a flurry of thoughts, ideas, concepts, things "to do", etc when the morning coffee has ignited my awake circuits.  And then the day hits in all its glory.  Get in the car, go do this, go do that, get back home, walk the dog, train the dog, make phone calls, clean dishes, laundry, get Daniels laundry done, make more calls, and then kaboom!  That ignition switch turns off and all of those wonderful little creative animals scurry back into the crevices of my brain to hide away until I can handle thinking of them again.

I get tired very easily.  To be a busy Mom is a giant job in itself.  And then to be a Mom of a 16 year old boy with a deformed brain, seizure disorder, gtube feeding schedule, daily therapy routines, nursing, doctors appointments, diagnostic tests, equipment, medication, and endless worries puts me right onto the ledge of "how much more can I take?"

I can't believe its February already. I truly do not understand where January disappeared to and honestly think there is some kind of cosmic conspiracy going on.  Then again, my memory has been questionable and my focus right there with it.  Those moments frustrate me when I see people in the grocery store who I definitely know and yet can not for the life of me remember why.  Usually hours later it hits me, OH YEAH, that's Jonie Smith, little Johnny's Mom from baseball 5 years ago. 

February has been walloped with snow this year.  This week as a matter of fact and that has been nothing short of a giant white chilly blanket of depression.  When you have a 4 week long sinus infection, and chronic fibromyalgia, the cold just stabs you like knives leaving you longing for a hot fire in the woodstove and someone to hug you. 

Its been cold too.  Not just normal winter cold but "ouch" the air hurts cold.  As I walk the dog along the trails we carve out for his little legs in the snow, the one thing I always notice is how brilliant the stars are.  Beautiful really.  I think it is the silence and the lack of leaves that makes the stars more pronounced.  Tonight the moon looked about half size and the snow was almost blue. No need for a flashlight.  My point, you ask?  By finding and holding onto the beauty and peacefulness I am able to sustain myself for the 5 minutes or less that I allow little Henry to pee or poop.  His feet get too cold.

February is suddenly here spitting out red hearts and chocolate displays for Valentines day.  On my desk of mess, lies a fold called "blessings basket".  Its pretty fat at the moment. It contains copies of checks, cards, gestures I've jotted down, and basically everything and everyone that I want to thank. People who have blessed our life with their kindness and loving gestures back to December, maybe even all the way back to Daniels WONDERFUL Birthday Card shower.  Each time I go into CVS or Big Y I look for pretty thank you cards, and pick up one or two.  I have lots of little kind words pop into my mind, and have so many things to say.  But I can't even get myself to comb my hair every day. Getting through this blessings basket is now my biggest goal.  I saw a billboard today with someone I know advertising their business, and thought to myself, wouldn't it be nice to just put Daniel's picture up there and say "THANK GOD FOR ALL OF THESE WONDERFUL PEOPLE WHO CARE ABOUT US"

Was it a pastor at church that gave a sermon about gratefulness that just stuck in my brain of molasses and fleeting thoughts?  Probably. The extremely important reality is the actual grateful heart that is inside my achy body.  Very grateful.  As I am writing this very blog, I wish I could record the sound of Daniel laughing hysterically on the monitor.  He is just happy, and looking around, like a silly teenager having a giggle fit because they are just so exhausted.  He has been strong this winter.  God's hands have held him with love and protection because not a single cough or fever has presented.  I am so grateful. 

There have been some spectacular miracles in my bubble, or on my "planet" this year.  Many of those miracles are simply people right here in Newtown and Sandy Hook.  People who read my words and realize that they are simply an expression of the love I have for my family.  It is difficult beyond measure to raise children like Daniel.  Some people have a hard time accepting help, accepting kindnesses from others.  But I know that God calls us to care for eachother.  Kindness counts and being thankful counts.  Through caring for others and through receiving care the concept of kindness is nurtured.  It is those who have least that often want to help others.  A thankful heart will do that do a person.  Many people just turn a cheek, because they have their own world to look after.  Each one of us has something.  A sick relative, financial problems, loss of a job, and the list is endless. 

I am digging deep for the words here to express the fact that God gives so much to us.  He blesses our lives with each other, with this place we live, with the food we eat and the clothes on our backs.  Who are we to hold onto everything and turn away from each other when there is need?  I do not just mean giving things, I mean giving of compassion. 

Daniel is a challenge for me.  I am 47 years old and I have dedicated my life to provide him with a life.  I am blessed to have him and he deserves my undivided attention and care.  All of my friends out there also with severely disabled children will nod a giant virtual nod when I say that the world does not help those who sacrifice themselves for the sake of others.  The money is sucked away from some big greedy money vacuum.  The cost of what medically fragile people need, and the stress it puts upon the families causes the unraveling of many families.  Sometimes there is barely money for food and gas.  Other times there is such lack of sleep and illness on my shoulders that I can't function.  There certainly are many days that I just fall down to my knees and pray to Jesus that I can't do this on my own.  He tells me to step out on faith.  I know He is with me.  The spiritual world is all around us.  We can see more miracles with a heart of gratefulness.  Try listing the things you are sincerely thankful for. That list will start with superficial things, and as you go on and on it will evolve into concepts, feelings and emotions.  Suddenly you find yourself thankful for someone who you have never thanked!!!  By thanking them, the karma is fed and miracles can continue. 

To end with a moment of thanks, my friend dropped off a bag full of frozen home made soups today at my door step.  It may sound crazy, but it was very exciting for me to have so many home made soups. I'm not the greatest cook.   But many hands made them, and I think that there is some beauty in that generosity.

We will continue on in the difficult journey.  I know that my pile is high and my burdens are growing.  We don't know where life will take us, because there is no savings plans, or retirement programs, or plans for the future.  There is only tomorrow.  If tomorrow Daniel stays healthy, happy and engaged in life.  Then that has to be enough.  Anything extra is a bonus.  We will probably never have that new kitchen, or leather living room chairs, or get rid of the 1970's wall paper.  But its only a physical house.  As much as I struggle with want, I aspire to being a person who is much more eager to give.  and to thank others.

Tomorrow I will try that Tortilla Soup.  Sounds delicious.

Sinus infection vs haircut

😄church. Decision

It really is funny how on Sunday morning when I am waking up before all of my meds kick in, and before coffee, I groan at the thought of getting out the door by 8:30.  But once Daniels nurse gets here at 7.  And I have guzzled the first coffee, taken my pills, and found some Advil. I start to get a spark.

They say you need church the most when you are fighting yourself on going.  I most enjoy when I go with my daughter too, because she is absorbing so much. I love her positive energy and company. 

Thomas goes to his teen group and Daniel to Special Forces class. 

I typically don't have but 5 minutes to get ready so I'm not real pretty at the 9 am service. I don't mind. 

It reminds me of the things I wrote down last week that I said I wAs going to do for sure this week. We will remind again. 

I'm surrounded by sarcasm and negative jokes from the minute I open my eyes and the house comes alive.   A little peace will do a girl good. 

Going to church is not about a duty or responsibility.  It's about a relationship. So whether you go once or devotedly it's your relationship with God that matters.  He does, however, like us to fellowship together. 

Happiness. Happiness.  Happiness.  Choose happiness Julie. Choose it. Hold it. Don't let it go today. 

So. Hi ho, hi ho, it's off to church we go. 

Will we make it without anxiety and tension, I don't know. Let me find the Advil because I am stiff and sore 

Have a happy day.  Find something that raises your own personal happiness factor. 

Sunday, January 12 2014

Up late

Give me some air

I just want to breathe

I am laying here lonely

Beginning to grieve

For the life that I wanted

I thought we would be

But your angry and distant

Disgusted with me

I am still just the same

Blonde hair girl with a name

I'm just needed now deeply

From someone in pain 

As you snore and you dream

I'm awake and I'm cold

I'm sad with no one to hold

So I care for your son

Watch him here all night long

The dog barks and I cringe

It's the same fucking song

So I sing it again and close my eyes

The barking gets worse

Daniel starts to make cries

Time to get up again and take a deep breath 

The only time I'll be loved 

Is after my death. 

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

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

Time to "start the resolutions"

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

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

Keys are falling off.

Crashes all the time

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

Live to dream

I'm dreaming of a MacBook

Live to Dream

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

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

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

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

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

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

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

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

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

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

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

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

Daniels Finger Print Tree