Happy Birthday to Me...

Today is my birthday. Before having Daniel I had always thought that all of my education would have launched me into a great career. But instead, I was launched on a different journey...one of self-less compassion and unconditional love. Caring for Daniel is a crazy road....and the world certainly continues to take from your resources 10 fold. I don't know why... 


I need to survive, my son is so fragile, and my children deserve to be secure.   Sarah and Thomas are so amazing too.

Today, July 27, is my birthday and my gift to myself this morning was a snuggle with Daniel. Realizing that in those morning moments he needs me for not only for physical needs, but also for love.

Perhaps today will be a day full of miracles...a day where the pressure comes off... but birthday or not I still have doctors to call, and medicines to order and pick up, diapers to change, and tons of laundry to do.

This morning Daniel was happy one minute, and retching/vomitting the next. And all I can say is... keep trying....keep trying...keep trying....


I am going to enjoy some cake and take a few minutes to reflect on my life...  and how far we have come.   So much to be grateful for.  

Happy Birthday to me.  Cheers!!!!

When still legs meet the water.

There is something quite magical about taking a child with spastic quadraparesis, out of a wheelchair and bringing their non moving legs into the fluidity of the water.  Therapeutically it goes without saying, water is very healing and effective for range of motion and exercise.   Thankfully this summer, the warm weather has made the town pool at Treadwell Park warm enough for Daniel to tolerate.  He is getting tall, and heavier...and we find that we have to take turns working with him in order to give our arms and shoulders a rest.  Seeing how much he loves the water...  is such a joyful thing...  priceless moments as they would say in a VISA commercial, right?

Summer has been warm and cheerful this year, with Daniel receiving a hefty daily dose of additional phosphorus and calcium supplementation to really build up his bones.  We are still waiting to see how much improvement in bone health and strength has been achieved, but just seeing him kick and thrash and throw his body around in the pool....convinces me that there is quite clearly some degree of strength improvement.

But even the pool, as much as he loves it, is risky business.  One swallow of water will go down into the airway and cause problems with breathing so we have to be very careful not to ever let the head go into the water.   NOT always an easy task.  Sometimes even a splash from a nearby child can land in his mouth and cause a rattle of congestion.   But so far, no respiratory emergencies.  Watching the children flinging themselves off the diving board...or swimming underwater to retrieve a diving toy...I wonder if they know how lucky they are...but some things are just assumed...  motor skills... check...moving on.

I've been telling myself every single day, that a positive heart has to take control. And that as a strong woman and Mom...I will find a way to get through all of the ups and downs...  we've come this far.  Its a story of triumph, of compassion, of people helping people, and of never giving up on my child.  Never giving up on my family...and giving them what they need.  It is not easy....and quite frankly...more like a war than a struggle sometimes.  

Today is July 24th.  I have been looking for a job but have had absolutely no luck.  I am studying to take my property and casualty exam but that will take alot of time.  I am always on the look out for some grant, program, part time opportunity, anything that will help bring in funds.   Here is where I deep sigh at myself.  The piles of issues are still there, like a big thick wall that encloses me.  Every day I pray with all of my heart that this will be the day a miracle comes our way...  that somehow God will continue to shine his light on us.    

We are a Mom, a Dad, and three kids.  And Daniel is the one kid who needs 100% of our attention, 24 hours a day in order to keep him safe, healthy, happy, and lets face it... Alive.    That degree of attention steals away from making money and being prosperous...because 1) our expenses are ridiculously always increasing for him and 2) my career aspirations have been stomped on because I'm out of the work force for 10 years now.   I have an MBA and they all tell me, no thanks.

So there is some solace in the warmth of the sun, the ability to swim and be together...  God has blessed our family since June by bringing us closer together... and that has been wonderful.  

Daniel is a quiet, non verbal, teenage boy with big wide eyes studying the world.  I can only imagine what it must feel like for him to be immersed into a swimming pool!!!  You can feel happiness just radiate from him.

 Daniel is in Special Needs summer school until August 9th.  He is receiving physical therapy, occupational therapy and speech therapy there.  He is also receiving physical therapy and occupational therapy at home. We are doing everything we can to keep his scoliosis flexible and keep his positioning safe.

The Ford Pinto Wagon...and Summer prayers

Prayer for finding employment

Heavenly father, please sustain my spirit as I search for new and meaningful work. You have blessed me with a healthy body and a keen mind for which I am grateful. I ask that you open my path as I seek employment that will allow me to support my family and myself while serving others and your divine purpose.

In gratitude and grace, Amen.

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Prayer for prosperiety

Dear God, source of Love and Life who brings abundance to all,
Please bring prosperity to me and my family now.
We ask that these basic needs be filled:
Money to pay our bills,
Income to meet our mortgage (rent),
Enough to feed us healthy food,
More than enough for health care and wellness...
And especially to sustain and care for Daniel

Beyond the material needs, please uplift our souls.




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Today is Thursday July 12, 2012.  Its been hot, and sunny and practically perfect summer weather here in Sandy Hook, CT.   Schedules are hectic, but boy would it be perfect weather to take a picnic and head to the beach for a day.  I remember as a kid, we always used to picnic and do day trips for our vacations...it was fun, and it was all we knew back then.

But raising a child who is medically fragile, and can't walk, and needs medication around the clock, and can't talk, and is heavy to carry, and has seizure risks, and severe scoliosis...poses alot of complication and compromise to what could be a normal active summer for our family.

I sometimes sit and reflect on the things we could be doing if we all were healthy and normal...what would it actually look like???  How would I be as a Mom?

And the reality is...  that's not the plan that God had in store for us.   So we have to try and work around the complications, and do the best we can to make things fun and find joy.

I have been experiencing daily anxiety to high degree about Daniel...and what needs to be done to correct his spine.  And I wake up sweating and scared.  And in order to calm my storm I do deep breathing exercises, and I pray.  

Then the next day I will start having anxiety about finances and finding a job, and the same things happen, sweaty and heart beating fast and worry about the future....  and I find time to calm the storm again, and pray Prayers like the ones above.

Daniel on an adventure...  thank GOD for handicap parking spaces.

This road we walk is not paved and smooth.  Its bumpy and full of wrong turns, and giant hills, and riddled with pot holes and problems.  But there are really only two choices.  Stop.  And give up.  Or just keep on walking.  Keep on trying.  Keep on moving.

That is why I do what I do.  I love my family....and I would go to the ends of the universe to help them.  But Daniel...  Daniel is so different.  

I am his ears, his words, his touch. I am his breathing, his eating, his moving.  I am the key to his life and his sustainance and he can not survive without 24/7 attention.

That is why I reach for help.   Because if you cant do that....what's the point of having community and family?  We help eachother, we love eachother, we support eachother...   we give of ourselves, through our words, actions, prayers, and deeds.   That's how I was raised.

On those hot summer day trips to the beach as a kid...I remember being packed into the back of a little Ford Pinto station wagon...we had very little money.  But somehow back then I didnt know that, I just knew that we were getting out of the apartment and going somewhere fun.   Life seemed so simple for me, and I know now that it must have been so hard for Mom and Dad...but they never shared that worry.   

I think our wagon looked something like this...  ours was a copper color!  Good times....Growing up in the 70's

We just did the best we could.   And praise God the three of us were healthy, happy, girls....

What are you doing this hot summer?  Maybe you have the money to take your kids on a cruise, or to Nantucket for a month, or put them in summer camps, or maybe, just maybe...  you can only afford a trip to the zoo...or a movie here and there.     Wherever your adventuring spirit takes you...  please remember as your kids run freely on the beach...that many kids will never be able to run freely on the beach...   remember how blessed you are.  

I am Daniel's feet...  I run on the beach for him.   He smiles in the breeze and sun as he watches.

Julie Hasselberger

Rolling Into Summer...Blog entry July 8, 2012

Summer...  July 8, 2012  My Blog for Today.....

Today is Sunday, July 8, 2012.  It's been a hot summer so far...pretty much everywhere I imagine. We were blessed to have the chance to escape to Cape Cod (South Yarmouth) where we stayed at the Red Jacket Resort.  I chose that place, even though it was ALOT out of my budget because it had wheelchair accessibility, close to the ocean, and enough room to care for Daniel while also providing a nice place for Sarah and Thomas.


Thankfully, we returned on June 30 healthy and without any "events" such as vomitting, seizures, fevers, or periods of handbiting and crying.

Daniel resting after a good swim with Mom and Dad

Now comes the task of dealing with real life again for the rest of the summer.  Who doesn't like escaping "real life" for a while.  Real life is the equivalent of worries about Daniel's scoliosis which is worsening, worries about his bones which are demineralized, worries about where the road is taking us next with him.  He had tests done this week, and saw his gastroenterologist...and we are waiting for tests results which will go to the surgeon and the endocrinology team (bone doctors!) for some direction as to our next step.


Yesterday, Daniel cried ALOT and was hand biting.  Looks of pain periodically on his face, and if it trends, I will have to do my due diligence to find out how to help him.

Enjoyed so much the ocean breeze on his face while we took walks. Priceless smiles.

Real life is coping with a house that is falling apart, cars that are on the brink of failure,  a fat folder full of issues to resolve/research/study/call about, continue job searching (which has been SO FRUSTRATING), and pray that somehow some miracle will happen that will put us in a better place financially.  Isn't that always real life.  For so many people....  I know.   But the hard part is raising this child who has so many medical risks and medical problems...and also try to care for Thomas and Sarah.  OH MY GOD...Sarah is going to college next year.

Thomas, Daniel and Sarah

I wake up in anxiety, pray for faith and calm...  and go through my daily routine.    


Back in June I went for an interview at Danbury hospital!  It was GREAT.... for a Patient Access Liaison.... part time.  I had a very good interview, passed all the computer tests, and was told I would have a second interview the first week of July.  I thought, finally...  something to be flexible around the nursing schedule that pays well...  WELL...  that died when I got the canned rejection letter via email on July 3.   Ugh.   I have so many qualifications, an MBA, years of excellent work experience...  but yet everything I attempt hits a wall.  So I have a ten second funeral, and keep on trying.  


All the while, always worrying about Daniel...always managing his medical needs, always worrying about the bills, and daily having that prayer and self talk about BE POSITIVE JULIE, FIND A PLACE WHERE FAITH COMES FIRST, TRUST IN THE LORD.    And...it works, I feel better, and I keep on going going going.

Watching his brother ride a go Kart...probably wishing he could ride too

I know in my heart, somehow, that a miracle will somehow happen.  Someday.  Perhaps it will be a breakthrough in health for Daniel, or perhaps it will be a good job offer for me, or perhaps it will be a wonderful financial gain to support us as we deal with this challenge.  


Like a track and field athlete, we just keep hurdling, vaulting, and continuing to run the marathon. Wondering when the time for rest will finally come.  Believing that all of this is happening for a reason.    Believing, praying, focusing and living with so many unmet needs.

He watches and studies everything around him.  He can not speak, but he uses his eyes to learn about his world.

You can clearly see the leaning from the Scoliosis in this picture. This becomes painful for him.

Getting upset... needed diaper change!

Exhausted, He snuggles in his favorite position...

What really matters most at the end of the day????