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  :)

RAISING DANIEL: Letter for Help this Fall 2011 Dear Friends.........

RAISING DANIEL: Letter for Help this Fall 2011 Dear Friends.........: I made a few edits and read my letter three times this morning. I then opened a termination notice from a utility and it suddenly started ...

ARE YOU LISTENING??

Today I came across a file full of things I have written in the past.  How I got to this one, on this appropriate day of need...and isn't it funny that I need exactly $2100 at this moment...  well...just read...   

Julie Hasselberger

written July 2008

The Amazing Language

Are YOU LISTENING??

For those who are believers it is no coincidence that the car in front of you has a bumper sticker that says “Got Jesus”  Or that when you turn on the radio the song you hear is “you raise me up” by Josh Groban even though that song has not been in the top 40 for a very long time.  Or you pray about a dear friend and suddenly you get an email or a phone call from that person.  That a card in a store will jump out at you with a biblical quote so perfect for your life at that moment.  That you reach into your jewelry box and always pick up your cross first. That a store clerk will notice your “faith” necklace.  That you stop on a Christian channel and actually listen to the message of the pastor.

Sometimes when you look around your life and look for the language of God you will start to see it.  If you believe it is there.  He speaks to you in a language that goes hidden to those who are self absorbed non believers.

Isn’t it amazing that although you don’t have riches to spare, you have a prayer of thanks over a simple meal.

And when you can barely pay your bills, you pray for help and a check for $2100 appears in your mail box.  And when you pray for Jesus to speak to your heart, you step into a tank of water in front of a hundred people to show your love for Jesus.  And he moves your heart to tears.

The language of love. The language of the heart.  When a beautiful Christian song brings you shaking to tears of love…   as opposed to the chitter chatter music of lyrics that mean nothing.

Prayers for the simple ability…. To exit. To be in the moment..  God speaks to us through a bird landing on the deck, through a beautiful sunrise, through our ability to see these things..  and realize that He is all around us.  In us, in our souls and minds.

I see angels, I see messages that make me have hope, I see bumper stickers everywhere that say “Jesus is Real”, “Believe”, “Miracles Happen”…

I hold my disabled child in my arms and I know that He is a child of God…too.  Just like all of us.  That through my faith, my strength, and my soul I can listen to the language that is being spoken to me.

Sometimes our sick world drowns the language…  with non believers, with anger, with stress, with selfish indulgences, and we don’t even realize the trap of the ego.   People who complain, whine, and whimper over their own problems. Worry, despair, loss of faith.  All of these things drown out the language of life.   

Peace… find a really peaceful place..  be grateful..and really look for all the things you are grateful for.  Open your eyes to all that is good, all that is wonderful…  all that is peaceful.  Pray to God to speak to your heart.  Pray for Jesus to teach you how to live. If you believe in some other force of life, pray to that force to help you. But don’t let the evils of self pity pull you away from the wonders that are a gift to you.  Look at how miraculous our world is…and is there a doubt that life is amazing?

I find, that when I find the place of peace.  The language is louder than ever.   I know that I have a place in this world, as a Christian, as a loving part of a purpose driven world.  I believe He speaks to me…and I choose to listen.  Do You.   Do you REALLY LISTEN?  Do you REALLY REALLY REALLY REALLY listen.  Stop.  Be completely in the moment.  Let go of ego.  Say to yourself.  I AM.  I simply AM.   All that is within me…is life.   I am a part of the ebb and tide of the life force.  I AM.  Let it go.   Live.  Be alive.

As I write this, I look out my window at a fabulous yellow day lilly growing right outside of my window.  And a bird that has landed near it.  The green of the trees, the colors of my flowers.   And inside, the sounds of my heart…the children I have brought into this world…that I am so grateful for.

And the aches and pains that I felt when I woke up…are replaced with a grace and strength to work through it and trust in the language of God’s love and plan for me. 

Listen.  Listen to life…get beyond your ego…and really listen.  There is still time to change.  Still time to believe.  Still time to heal. Still time to live.

See that?   This morning…  Sarah (12 years old) was watching a touching video about Jesus….and it almost brought me to tears, inspiring me to write this even though I have a million “things” to do.. I chose to sit and write this down.

And it changed the course of my direction this morning,   Because I chose to listen when God speaks.

Do you?   Do you listen?  Let go of your pain, problems, self pity, ego, worries, fears, negativity…   let it go…if even for one moment.   And look for something beautiful that you never noticed before.

That something is probably right in front of your face.   And you now…are listening.  Keep listening.   Keep believing.

July 19, 2008

Daniel Gets Up...but its really hard

His legs are floppy and he doesnt weight bear on them like he used to.  I owe so much to Amy, our physical therapist who comes and helps get him up.  I know that if I did this with him more and more he would get stronger.  In watching this today I committed to working more on standing than ever before.

Daniel had a femur fracture in April...ever since then he has had issues weight bearing and he is very weak and floppy.

Plus...he now has a 36 degree scoliosis curve.  These are the things I could do more of...I could just relieve some of the other pressures around this house.  No one else here ....no one...seems to realize the critical importance of getting Daniel weight bearing and moving..

He has a house full of equipment that insurance paid for...so why not push it to the limit.  I only wish sometimes that John would try to learn how to put him in some of this equipment. But its my job.  I don't mind really...Daniel totally connects with you when you are working and helping him.

Short little video here will show you just how weak his legs are.  I'm so worried about this and about the spine.

I had alot more to say tonight...  but I'm spending too much time learning how to edit video.

Inspired...and lifted today

Sarah playing in Orchestra

Its a beautiful day here in Sandy Hook, CT.  I just feel like posting some pictures of my kids who make my life worth living....