Happy Birthday to this special kid...

Today...November 22 is Daniel's 14th birthday.  Considering I had no idea how far we would go on this journey based on what the doctors told me...  14 is a great reason to celebrate.

Life has been re engineered around this kid..but its worth every bit.  It certainly could be alittle bit nicer for me, maybe enough money to not to worry and panick, maybe get my hair done..maybe take Daniel on more lovely warm vacations, maybe just have less stress on our family as a whole. Less fighting...less pressure... more love.

But I keep trying. Watching...analyzing...studying...advocating... and everything I do is designed to give this boy the best quality of life that I can amidst the pressures of nomal life.

When I looked at Facebook today... Oh My GOODNESS....the amount of testimony to how Daniel impacts the world is mind boggling.  He is a special special child.  He is my teacher.  I love him...as I love my other children...as equal but unique gifts from God.

Happy Birthday...  Daniel.    Your smile is warmer than the sun.

Love Mommy....

Oh my God.. pneumonia for Daniel

On Thursday November 18 Daniel was breathing well.  He was actually not able to breath safely without oxygen.  Got him to the local hospital they then transferred us to Connecticut Childrens hospital where we stayed until his pneumonia was better.

Sunday was Sarah'Rose's 16th birthday.  And her final performance of Footloose at the Regional Center for the Arts ...in Trumbull, CT...

My brain feels like its going to explode with emotion.  Daniel's scoliosis is worsening.  I didnt do a great job of celebrating for Sarah... although she did get her kitten.

I can't afford much of anything...and yet I'm trying.  I feel like the world is just sucking all the money right between my fingers.

Daniel needs so much.  Sarah has college around the corner. Thomas just wants to be 10 and have a life.

I want to go back to nursing school to fulfill my passion to be able to financially support this team....  its not easy for John to feel that its all on him.

Daniel ...   you scared the hell out of me with this not breathing room air above 90 thing.  I feel like I am so behind.  Behind my behind ed ness.

I wish I could bring Sarah to a broadway show of her choice...with a bunch of friends...and celebrate her 16th in style.  I wish I could plop Daniel on a plane and get him out of germ filled cold and dank Sandy Hook...and go swim where its warm.  I wish Thomas had the ability to have more play dates, to see a real football game......  To all of them...  Daniel is a great joy, but a great burden.  To me...I love him and them all so much I fear the day that it will come apart.

God I pray you will help me.  Help me pay this mortgage.  Keep the old cars running.  Keep the old appliances running for another 10 years.

The big dream for me is to renovate the first floor so the Kitchen isnt a maze of a hallway to get the wheelchair around... make it all open... add a first floor bedroom so I can be near to him.

This time I spent in the hospital with Daniel this week gave me lots of time to think...  and pray.

The damn economy doesnt take into consideration those of us who CAN work, but CANT work because they are at home caring for a child who is severely disabled.  It sucks.

And then the child becomes ill....and everything goes to hell in a handbasket.

Buried in Coupons in Snuggling into sleep

I started clipping the coupons again.  Strategically trying to save every single penny.  And tonight I actually fell asleep and woke up amidst piles of flyers and scraps of papers with the scissors still in my tired fingers.

Its the kind of tired you can't really describe...just pure mental...internal...physical and emotionally exhaustion.  Clipping coupons sent me into a savings induced coma.

I just thought it was funny that I fell asleep...mid clip.   My mind is just so overwhelmed with caring for everyone that it gives in.

I guess that's ok. But the best part of the day...was my 15 minute snuggle in the chair with Daniel...before he fell asleep.  Its magic.  

Its my turn.  This is what it will look like:   OH my friend there...that is Tinker...she is always near me when I'm sleeping.  True unconditional love.  She is a wonderful kitty.

Think Happy Thoughts.... Happy Thoughts!!!

Storm Alfred Booing, and a WTF reaction

So this storm came on October 29th and dumped a ton of heavy snow on our Fall trees, mostly full of colorful leaves still.  All night long we heard crack, snap, and little by little power went out all over town.  Aerial view was probably creepy if you were looking down!


We also got "boo'd" early in the evening...  and it was a bag of goodies...with generous financial donations for Daniel's fund.  About $700 towards our goal!!  It was an amazing gesture.  


Then more snow.  more more more....  The next day was October 30.  And 99% of our town was in the dark. Trees were down everywhere the eye could see.  Miraculously, like in Hurricane Irene... we were the small percentage who still had power.  All we lost was our Cable TV.    I decided that an Angel was sent to protect Daniel since we don't have a generator, and he needs power to eat, have breathing treatments, etc.  


Today is ...November 3.  The kids had no school this entire week.  Much of the town...and state ....still in the dark.   


Sarah told me she feels like we are in an alternate universe. I have to agree.  All that is normal was turned upside down.    How do you cancel Halloween???   


New England got hit hard...again.  Its been a very hard Fall...  my yard looks like "tree limb carnage"


But what can you do except continue on.   I need to keep working on raising funds for Daniel, and looking for a way to get to nursing school.  I have started believing that I need to take care of JULIE.   Storm Alfred woke me up.  Big Time.   Through prayer and a spirit of resilience I am going to make it through my own personal storm here.    I have so many people helping me.  Loving us.  And I love them in return.   Raising Daniel is a giant task.  Raising Daniel in hurricanes and Nor Easters... lol...  alittle more challenging.   

Our Surprise Boo gifts from some very caring Newtown People!!!

Saturday's ride home from our last Football game

Tree limbs snapped off everywhere

This was my Japanese Maple tree...completely bent over

Snow was so heavy you couldnt use a snow blower

Several of these branches eventually gave way and broke

Not a swamp creature!!!  It is what is left of a giant very full willow

All the trees just in an arc shape.  They looked so sad...

Snow before Halloween.

Very symbolic of the strangeness... this giant pumpkin snowman made me stop my car and take a picture!!!

Roads completely blocked off

He (Daniel) never seems to stop smiling.       God bless you all.

GoFundMe in the Fall...2011

Man....grey sky, orange leaves, cold air... so damp ....  Clearly winter is starting to move closer.  Today I have spent the entire morning on my computer...  Looking for other funding mechanisms, grants and programs for special needs children.    Looking for jobs...feeling very frustrated.  I am a confused jumbled mess today.

I did get a recommendation to use GOFUNDME.com   Which I think is a cool new website ...  You can set up a measureable goal to attain and work towards in your fund raising efforts.

And then share it with Facebook, twitter, etc.  So I set one up for my guy Daniel.  Who God knows needs so much more than I can provide in my meager time consuming all encompassing life.

If I could draw life as a giant rollercoaster I would.  Because I am on one every single day. It never settles, it never stops, there are moments of relief ....and then it starts again.

and again.

and again.

Please see GofundMe   recommend it to a friend.  Maybe you need to raise funds for something or someone special.  Try it.  

Somewhere in this house there must be warm sweaters.  I know its pretty to look at...but Fall this year is a prelude to wondering... "after last winter what the heck is going to happen this year?"

Daniel. And Water.

This is why I do what I do.  Daniel loves the water.  He can feel freedom in the water and when I swim with him I sense that he can use his entire body and not have the limitations of gravity.  

I had him in Aqua therapy for a long time with Angel Fish...but could no longer afford it.  Now I am the therapist..and he seems ok with that.  At least he swims.

Water is magical.  I don't feel right unless I'm near the ocean.  I don't know why.  I miss Naples Florida desperately because there...we can swim every day... multiple times a day.  I long for a chance to bring Daniel back to a warm climate.   Sarah and Thomas like it too...

Here are some pictures of Daniel in water.  All that I do...I do for him.... to provide him with the simple things in life that so many people just take for granted.

I dream of the ocean at night... and being near water.  Someday.  Someday. We will be able to do this every day.

On the topic of fundraising and helping eachother

There is no shame in reaching out for help.  The reality is really pretty bleak for most families dealing with any kind of massive medical crisis.  Every weekend there seems to be a fund raiser, or cut a thon, or story in the paper about someone who is doing something on behalf of a loved one.  Disabilities, cancer, medical trauma, ...these are not things we plan on.  They are not part of the American Dream.   When I walked down the aisle on my Wedding Day 19 years ago... I never anticipated that my life would look the way it does right now.  Not after triumphantly completing my Masters Degree and setting my sites high on the corporate ladder.  I was an advocate of "Working Mother".  Now I am a mother who is an advocate of a severely disabled child.

But with all the love I can muster and the strength I can find I am trying to give him the life he deserves...and that makes it all worth it.   There really is no "plan" that is in our control....   There is no such thing as control either...   I am a Christian, and through prayer and hope and faith...  I learn the skills I need to continue on this mysterious journey.

But I can't do it alone.

October 2011

Dear friends,

As you may, or may not know, our son Daniel (13) has a severe condition known as Polymicrogyria. His brain is about 80% deformed.  It goes without saying that Daniel’s life is precarious and each day he faces seizures, respiratory fragility/aspiration risks, and overall physical and developmental problems.  He is fed via g tube, can not talk, is in a wheelchair and has developed scoliosis this year with his growth.   He will require surgery to correct this. 

I have put together a terrific team of medical professionals, and therapists that see Daniel and work with him as much as his insurance allows.  I manage his many doctors appointments, hospital trips, insurance bills, equipment, educational intervention, medication and supplies, and most importantly providing Daniel with a joyful quality of life, a safe home, and comfort.  It is a full time job.  I was terminated from a full time job in 2002 because of Daniel.  Shortly after that he needed major hip surgery at the age of 6…and I had to put my job search on hold.  It is still on hold…as his needs have significantly increased with growth and age.       

I’m raising funds for my son because we have so many needs and expenses that raise the bar so high above normal life!.     I have started a blog/website  julieandjohnhasselberger.blogspot.com   with ongoing updates that I am going to keep current.   

Looking. Searching. Seeking. Praying.  Mostly praying.  For resources.

And asking people…

“Can you help in any way help our family”  The goal is reach $10,000   in order to pay medical bills, pay for van repairs, pay an $1800 therapy bill,  repair our home(needs a lot of repairs), and set up a Fund in his name in order to build for his future.  He needs a new car seat ($800) and now Medicaid is not paying for diapers so we will have a huge expense there.  

  “Do you know anyone…or any resources…or is there anyone else I could talk to?”      Its ridiculously difficult to take care of a disabled child in this economy, and we have a family of 5.   

We can survive if we can take care of Daniel’s expenses.   I am planning on going back to school for my nursing degree. I have a Bachelors, and an MBA in Human Resource Management…which provided a great career for many many years.  But the traditional corporate world doesn’t accept professionals who have been out of the work force for awhile, and who need flexible schedules.  

Perhaps you know of someone who can…and you can forward this to them. 

With much love and gratefulness,

Julie Hasselberger

Psalm 34

Hasselberger Contact information

Julie, John, Sarah, Daniel and Thomas Hasselberger

35 Bennetts Bridge Road

Sandy Hook, CT  06482

203 426 8674

203 788 9602

jhasselberger@snet.net

julieandjohnhasselberger.blogspot.com

The Early Morning Wake Up

Each morning I wake, and rush to his room. Place my hand on his chest...and wait for his breath.  I fix up his blankets and check on his diaper.  Check on the pump and adjust his position.  His curve in his spine...is clear as I move him...but he snuggles back down into what is comfy.

I stand by his bed and watch him so peaceful. And wonder how a child with so many medical challenges could be so peaceful and incredibly beautiful.

Sometimes I can go back to sleep...but usually I stay awake thinking and praying...

I am grateful for how well he is doing.  And may I honestly say...with my heart in my hands...that I never thought turning 14 would come so fast.

Now I sit drinking coffee...because the nurse has arrived..

Stepping out on faith prayer

Dear God, You will hear my prayers as I go to sleep tonight.  I pray Lord that you guide me into light.  Please provide a miracle, a life line.  Open hearts and open minds.  New beginnings.  Wounds to be healed.  Please please secure my home, my cars our home. That we may safely provide and care for our children...and have a place  to raise them without constant fear and worry.  Bless my Daniel, that he will have yet another restful night without seizures and will wake happy.

Help me be a good mother and a good wife.  Take away pain and replace with perserverence.  I need to step out on Faith Lord.  And I am stepping out by asking for your help.

Amen

If There Was Just A Way

If there was just a way
For just one day
To let these pressures fly away
I would dance and sing
To see such light

For now I'm tired
As all I do is try
To keep life going
And keep my heart high

I want to cry instead
Curl up tightly in the covers on my bed
But I sit here thinking
As I try to clear my head

Its not meant to be easy
No doubt is in my mind
It is meant to make me struggle
Not to ever look behind

But in this moment as I sit
And feel my soul deflate to gray
If there is any way
 Dear Lord,   could you??
Bring me for just awhile
 To feel the way you do.??


October 18, 2011

Hayrides, Auditions,Pumpkins and Offensive tackle

Pumpkins Ready!

It is Monday October 17, 2011.  The weekend was the epitome of Fall in New England with hot chocolate morning football games.  Mums and pumpkin flavored everything. Leaves of all colors and a wind blowing to add a chill...but a warm sun to toast your cheeks.

Pumpkins growing....

I only watch but I have a great time....

Nurse Marques came out to watch the game..Sarah in the background drinking hot chocolate

Other disabled special forces friends wait for a HayRide...

"Lean On Me..."

Hold on its gonna get rough!

Whats Fall without Mums?  Wish I had some too...  :(

Our Cheering Section... Dave, Daniel, Sarah, Me...John and Marques,

Cheerleaders

My expression is for the gross MUDDY SWAMPY part of the ride

Thomas had his football game...  and then I took the kids along with our New Nurse DAVE...  to Paproski's Farm for an old fashioned bumpy muddy hay bale under your butt hayride.

Pumpkin Launcher

Daniel was hard to hold this year with his crooked spine it was all I could do to keep him in a good position.


There will  be a time when I can no longer do these types of things.  I think about the spinal surgery often..and wonder how long it will be until he is so crooked that he needs surgery.  


Sarah... ..auditioned this weekend for a Production of Oliver.  She is so talented, and I do try to spread myself out to try to get everyone what they need.


I saw some amazing clouds this morning that looked like Angels.


I prayed that God would provide for our needs...because they are many.  And I live in fear, fear for Daniel's health, fear for security...  but the realization comes that there is no security.  So I tell myself...put aside those piles and laugh.  Sing.  Look at the beauty.  Giggle and tickle and share joy.


There are people in my life who do not exhibit joy. Or gratitude...  So I pray for them.  


Anyhow...  my priority is keeping my house intact, keeping Daniel safe and warm and doing everything I possibly can for all three of my children.  


The biggest question remains...  What will they be for Halloween.....

(If anyone would like to Donate on Daniels behalf there is a paypal button on this blog)   we would be very grateful  :)