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

January 2013 Starting the year the way we ended the year

He and I are here.  It's January 4, 2013.  A disney movie plays on a portable xbox station.  Balloons are all starting to deflate.  The sounds of beeps and buzzers are now background noise, and when the doctors and nurses come in, its like seeing old friends.

He is in his bed, and his tummy is hurting but his smile lights up the room.  It was not too long ago from this moment that I really missed Daniel's smile.  A pink pitcher with ice water, the daily platter of fruit, donuts, and muffins.  Fairly bad coffee that has become quite good.  Two small suitcases that rotate clothes back and forth to home.  A bathroom that looks fully equipped with our stuff.  Piles of bills to pay, cards to write, books to read, and magazines.  The same ugly view out the window.  The same scratchy white towels.  Friendly faces, and helpers when needed.  Every single person says "can I get you anything Mom?"  Because in the Children's hospital they don't bother to learn your name, you are either Mom or  Dad or sister or brother.  Phones ring in nurses pockets and they answer "7-2" then rush away to where ever they are needed.  6:00am the orthopedic docs come in, and turn on the brightest of lights, smelling of strong cologne which contradicts their maroon scrubs, they check Daniel's incision and leave, usually forgetting to turn off the lights.  And the yellow protective gowns and gloves.  Being a "contact precaution" room is hard because everyone who comes in here has to cover up.   Daniel tests positive for MRSA....and therefore he can not leave his room at all.   Respiratory comes in to do breathing treatments twice a day.  Always a different person. 

One day a nice friend had a bag full of goodies delivered to me from the gift shop downstairs.  Magazines, cookies, slippers, a teddy bear...etc.  And then I pull out the People Magazine.  And I am home again.  Home to the sadness because on the cover of People are the faces of those angels we lost on December 14.