The Gift of a Voice

Last night we went to see our daughter Sarah perform in a Western Connecticut Regional Choir event that she had to audition for and was selected.  I have been listening to Sarah play piano, play viola, and sing in musical theatre for several years now.  But hearing this music brought emotions to my heart that took me hours to sort out.

The gift of voice.   The voice is an instrument.  A tool through which you can make beautiful music, make someone feel special, make a difference in the world, or choose to keep silent.  Like the written word, the voice can portray so much about a person and what is inside your heart.  Your mind.

Listening to this one song in particular... the song called "Water Night" made tears stream down my cheeks at the blending harmonies and the emotional connectivity that these kids... had to this performance.  Remembering that these young men and women are still in highschool... made it even more powerful.

People who can open their voice, and share this kind of talent....are special special people.  But its not just vocal talent that I am talking about.  Not just singing.  Its what you sing.  Its what you say and how you say it.

If you swear, and belittle people... what kind of love and beauty does that bring to the world.  If you try to make someone else feel special each day, and turn your heart away from your own selfish desires... isn't that what living a life of integrity is all about.

I value and look at this young talent as something that is a rare time in history...because these young people will soon be on their way to a life of maturity where they all will be making choices how to use that tool...that instrument.

And what about the children who have no voice?  What about the non verbal child who was born without the part of their brain that will allow a voice to be born?   Daniel speaks only in limited vowels.  He can not sing or recite a poem or say a speech.  But he can talk with his heart.  He can talk with his hands.  He can talk with his eyes.   When he reaches up and looks into my eyes and touches my hair he is telling me sweetly that he loves me.

I have this daughter...she is so beautiful.  She makes me so proud I could burst.  There is no such thing as perfection, and sometimes her words are not quite the best choice. But who in life is perfect... But a voice is a gift, its your instrument to change the course of each moment that happens. Little moments or big moments....use it wisely.

I've always felt that when a musician can find that place where their voice is coming from a place way deep inside them...when they have stepped  over the threshold of realization that music is not just sound but a gift...then they are truly truly musicians...  If you have ever heard someone sing, and they give you chills and make you cry... well... I think you know what I am talking about.

Today is January 15, 2012. Its absolutely freezing here in Connecticut...about 7 degrees I think.  I think its a great day to make some music, or listen to some at least.  :)

Sarah is the red head in the center

Julie Hasselberger

Medical Bubble

This is pretty much what we've seen alot of lately.... sleepy, lazy, leaning to his left.  Daniel has a couple more days of home antibiotics...then its back to the doctor for more tests, an upper GI to look at the status of the stomach surgery from 2007....and blood work.  Pulmonary and Surgery follow ups... etc etc.

I feel like life is a medical bubble and we are floating around the world inside it.  I am trying my hardest as a Mom and Wife....to find the joyful side of me...and yet every corner presents a new challenge and a new need.  Do you go to the pharmacy virtually every day???  I do.  There are just so many things to pick up, and/or fight medicaid over for Daniel.

Its a new year.  I don't know where its going. But I know its taking me along.  It would be so wonderful to take the kids on another vacation this year...somewhere warm....because its been a hell of a high stress winter already.  Not because of weather....but its the P word.  Once in November and once in December. Whats next ....

I have a very very long list of Thank You's to write...to all of you people out there who help us...and especially those who helped and visited during the Christmas season which was a flop due to ....um... being in the ICU.

I still am reeling from the entire toll of what 3 weeks of a very sick Daniel has done to my confidence and pocketbook.  I just do what I  have to do, you know? The kids have to come first and Daniel is 100% reliant on me for everything...in every way.   This makes it EXTREMELY hard for me to get out there and work and have an independent life...  

The love I have for this boy Daniel...as we watch him grow now into a young teenager...is so amazing ....  we were once told he probably wouldnt make it this far.  Proved them wrong....

So for today, On January 9th..2012....  I think about trying to find my focus and productivity chip for the normal things that normal people do....but yet I am still bouncing around in the medical bubble...  which is where I belong... until things are settled with the scoliosis and pneumonia susceptibility for young Mr. Daniel...

A shout out of thanks again...and if you've helped me, and I have not thanked you... please know that I'm always so tired but I'm working on it.  

I do worry each night about the future...which is my prelude to a prayer about asking Jesus to help me not worry and not to fear that somehow resources will be found and sleep will happen again....

Beyonce Knowles named her baby "Blue Ivy"  ...all I can think about is veins. Blue IV.... its the medical bubble thing.  Tunnel vision.  Pray for me..

Signing off for a nap since I have midnight IV antibiotic duty tonight.    Julie  :)

January Thoughts of Blue and Scoliosis....

When I dreamed of my children and what their lives would be like...never in a million years did I envision the life that I have been led to.  Never in a million years..  as the saying goes...did I know that such a love and such a pain could exist interwoven into one tear.  Tear upon tear upon tear drop. Dropping down the cheeks of a woman who simply can not bear the worst and who is grateful for the best.


Today is January 3, 2012 and I'm writing in blue because it makes me think of cool ocean waves...  and it also makes me think of cold.  Contrasts.  Its very cold outside....but warm by the fire.  On my lap I have a 19 year old cat (Tinker) and a 5 month old Kitten (Theo).


Daniel is recovering from a horrible pneumonia...and on Thursday he goes for a visit to the Orthopedic Doctor...  Dr. DeLuca.. one of our favorites...for an evaluation of the scoliosis...and in all liklihood Daniel will be facing spinal fusion surgery...  and once again...the sweet wonderful boy with the face of gentle sunshine has to face unrelenting pain and discomfort for however long it takes to straighten his thin frail 14 year old body.


Scoliosis...  probably attributing to the two illnesses in two months he has faced...  I have been reading things like...


"Lung and heart damage. In severe scoliosis, the rib cage may press against the lungs and heart, making it more difficult to breathe and harder for the heart to pump. In very severe scoliosis, damage to the lungs and the heart can occur. Anytime breathing is compromised, the risk of lung infections and pneumonia increases."


So now I sit...just contemplating.  Just remembering my feeling of emptiness on Christmas when I woke up to see Daniel's bedroom empty...and I know that we have to do everything we can to make his life comfortable...  I just wish their were an easier way.  Contrasts. Why does the sweet gentle kind little soul have to suffer.  Why did Christ have to suffer.


I don't know.  All I do know is that I am writing in blue tonight because it makes me think of the way I feel when I am by the ocean and I can smell the sea air...  and I close my eyes and I am walking there with my feet in warm sand.  And all of my children are walking with me.

Hampton Beach, NH  one of our favorite places ever.....

Ice against Blue Winter 2011

Snow everywhere winter 2011

Ice....

Cold but dripping from the warmth of the sun...

Naples, FL  water temperature was 88 degrees

Blue.  Cold and warm.  Warm and cold. Blue in my heart....  but not in my soul.


Julie Hasselberger January 2012

New Years Eve 2011

Curled in a chair next to Daniel's bed...typing while he watches YoGabba YoGabba...sipping on some coffee...
Not quite interested in anything traditional this year...don't care to stay up to midnight, but I have to...  in order to give the midnight IV dose of Zosyn antibiotics..

I supposed in my heart I'm still moderately traumatized from the severity of this pneumonia and horribly sick Daniel became so quickly.  Its as if another of the "predictions on the great list of predictions about children with PMG" has been born to us.

And I don't know what to do except keep battling for him.  and battling for him.  Giving Daniel his bath tonight I caught a look of gratitude and relief from the warm warm water....  and he has these deep big round brown eyes that just melt my heart.

Losing him is not any kind of an option in my book.  I refuse to accept that.

Sarah is growing up... she is out at a party and I miss her.  I miss having her here watching TV with me on New Year's Eve.

Perhaps someday we'll find a way to go out to a dinner...or even dance...  its nearly impossible for us. So we cope....and dance around the kitchen.

Curled up in the chair in Daniel's room.  New TV show is on now...  and  in 10 minutes Daniel needs to have a breathing treatment and vest treatment.

I let our nurse Dave go home early...because he has a 21 year old life....and sitting here on New Years eye is not fun...

New Year's resolution...  to get myself healthy.  To resolve his scoliosis as much as i can...and to get him communicating better with his IPAD and Eye gaze.  I have to list them out....

But this has not felt like a holiday at all.  Christmas in the ICU changed my feelings about the entire holiday process.  We still have gifts under the tree that no one feels like opening.  It was just so sad to have our family ripped apart and terrified right on the holiday and days after.   I remember sitting under the Christmas tree picking up an ornament and bursting into tears on Christmas eve...as John stayed in the ICU and I came home with Sarah and Thomas.

Out of the smoke comes kindness...  and we had 4 families deliver meals, 3 families deliver family treats, and 5 people sent some money to help with all of the expenses we have been enduring.  Daniel may still yet end up back in the hospital...but he's doing better tonight.

I'm grateful to those people who paused during their own holiday mayhem to tell us they care. Warm thoughts and prayers went a long way.  When visitors showed up at the hospital...  it brought cheer to Daniel's eyes... and the favorite moments of Christmas are things like...

• Lorine Watkinds showing up with Christmas cookies just after I had been crying 
• Santa Claus coming around and giving presents in the ICU
• Daniel's school donating a turkey dinner that we brought to CCMC and had our family meal there.
• The food that came to make sure we had warm meals... chili, soups, pasta, pasta sauce, ziti, and lasagna.  And offers to give food...
• Meeting new friends in the hospital... because we were not the only family spending the holiday in patient.
• Hearing about the prayers that people offer up for our family
• Financial donations which helped with gas for the long long drives and continue to help with the huge expenses that just pile up relating to Daniel.  If you could ever know how grateful we are....  its beyond words.
• Thomas calling me the first night in the ICU...crying because our family was going to be separated for the holiday..  
• Seeing the pure love in Daniel's eyes for his sister as she leaned in to hold his hand...and hug him...
• Learning how to administer IV medication....

Those are things.  I ddnt even get Christmas gifts...  well....I bought myself a coat and a wallet...  and they wrapped it

Now its New Years Eve...and I'm sitting here alone in the chair...  well...not alone...  Daniel is resting next to me.  

I just want to sleep.  I want to sleep and blink to next Christmas because maybe Santa will bring Momma an IPAD.  or  a camera...    lol

I'm sure many people get to put on fancy clothes, go out to dinner... or go to friends' houses and have dinner and have fun.  But we don't have that.  As much as I would love it.

I'm curled up in the chair.  Just looking forward to planning my next week and staying sane.

December 31, 2011

Accepting your journey

Life is quite amazing sometimes.  In the rush and push of what we think we have control over....suddenly BOOM the course of your journey changes.  And you fight against it. And you scream against it. And you cry against it.  And then one day you open your eyes and you look in another direction.  And the smallest thing happens that makes your eyes open wide.  And you nod...wipe your tears and agree to stop fighting against what "would have been, could have been, should have been"....

And you accept the glory and wonder of what is right in front of your eyes......

Julie Hasselberger    December 31, 2011    9:45AM

You'll Be In My Heart

Come stop your cryin'
and we'll be alright
Just take my hand, hold it tight.
I will protect from all around you, 
I will be here dont you cry.
For one so small, you seem so strong.
My arms will hold you keep you safe and warm,
This bond between us cant be broken,
I will be here dont you cry

CHORUS:
'Cos you'll be in my heart, 
yes you'll be in my heart,
From this day on now and forever more.

You'll be in my heart, 
No matter what they say, 
You'll be here in my heart,
Always. 

Why can't they understand the way we feel,
They just don't trust what they cant explain.
How know your different 
Deep inside us, where not that different at all.

CHORUS:
And you'll be in my heart, 
yes you'll be in my heart,
From this day on now and forever more.

Don't listen to them, 'cos what do they know.(what do they know)
We need each other, to have to hold.
They'll see in time, I know.

When destiny calls you, you must be strong 
(you godda be strong)
I may not be with you, but you got to hold on.
They'll see in time, I know.

That your there together 'cos

You'll be in my heart,
Believe me, 
You'll be in my heart.
I'll be there from this day on, 
now and forever more.
Ooh you'll be in my heart 
(you'll be here in my heart)
No matter what they say
(I'll be with you)
You'll be here in my heart
(I'll be there)
Always

Always
I'll be with you,
I'll be there for you always
Always and always.
Just look over your shoulder x3
I'll be there always.

Brilliant Teacher....

He is a brilliant teacher

With a million dollar smile

That resounds like an echo

And never stops its glow

He gives and gives his gentle heart

In ways that he can’t show

He is a brilliant teacher

From the inside of his soul

And his eyes reveal such wisdom

Yet his mouth can never speak

He gives and gives his gentle words

In ways that he can’t show

He is a brilliant teacher

There is nothing that he wants

He is not selfish, is not jealous

For God gave him only love

He gives and gives his gentle soul

In ways that we can’t know.

He is a brilliant teacher.

A child of stars and sun

A moonlight dream of perfect peace

That came to be our son.

He gives and gives his lessons.

In ways that make us grow.

He is a brilliant teacher..

Though he knows not a single word.

Will not do a math equation

Or be a quarterback, or a scholar

He gives and gives his only way

In ways that we don’t know.

Our brilliant little teacher

We take in each breath you give

You sparkle like a diamond

And you are so dear to us

You give and give your gentle heart

And we just love you so.

Julie  3/19/07

Peek a boo, ICU Christmas time memories with a severely ill Daniel

December 11, 2011.  Vomit.  December 12, went to school, but started a fever in the PM.  December 13 went to the pulmonary doctor for routine visit...good visit...went to school...he got sent home with a 101 fever. December 14, went to pediatrician. Found nothing except fever.  December 15 went to pediatrician for blood work, and urine.  All came back normal.  December 16, fever continued. Saturday December 17th fever. Doctor started antibiotic but didnt know what was wrong. Sunday....Fever.   Monday, went BACK to pulmonary doctor for an RVP panel.. tested for Lymes disease..pulling at straws.

TUESDAY MORNING.... FEVER WAS 104.  THAT WAS IT.  I TOOK HIM TO THE ER AT DANBURY HOSPITAL.  Sure enough...the chest x ray showed pneumonia with pleural effusion..in laymans terms..a pneumonia infection that was causing fluid to accumluate on the outside of the lung.

Tuesday December 20, 2011...transferred to CCMC. I followed the ambulance in my van.  Admitted. Wednesday morning...the pneumonia was 100 times worse.  Fever was 103. He was struggling to breathe. Wednesday night...chest tube inserted to drain the fluid..immediately a huge huge amount of fluid drained.

Thursday. ICU. Friday ICU. Christmas Eve. ICU  Christmas day ICU and here I am...blogging to you on Monday, December 26th 2011 about the fear of watching a compromised child suffer through a left lung full of pneumonia.

As I write this post, we are still in the ICU, the chest tube is still in.  My sweet little patient is trending better now. but he has a long way to go.

So many issues....  but next stop after this will be orthopedic because his scoliosis is WAY worse too.

So..we spent our holiday in the hospital and quite honestly...the worst and saddest Christmas ever.  Were it not for our faith in Jesus.... it would have been really icky.  But we held on tight to the importance of God and Family.

Daniel's school donated a fabulous Christmas dinner of turkey.. and we ate it in the parent kitchen...

Reality is this... life does not care if its Christmas.

Now its the long long drive back and forth to Hartford from our home in Newtown...which is an hour away...loss of my income from weeks of not working...  stress and distance from my children...the pressure on John for holding down the house...   all of that stuff.

But I am grateful he is improving.  I am grateful he is alive.  I am in a fantastic hospital.  I just can't help but feel cheated out of a joyful holiday....while the rest of my friends and family were eating, drinking, laughing, going to church, opening gifts, sitting by fires...etc   We were apart...worrying...and waiting for the next blood culture or the next x ray.   And for the few people who dropped off cookies and treats, dinner, soup, and even money...  you have to know how much that helped keep spirits up.

Its going to be as long as Daniel needs to improve.  But one thing is for sure... we will never forget this Christmas of pneumonia.

I just want to get him home...and see him back in his world again.  I miss my home and my children terribly...

And here I sit with my friend my laptop.  Praying and praying that this recovery continues. That the complications Daniel has become less complicated. That things hold on at home...  because life doesnt give you a break when your child is sick. I hope I still have my part time job...I hope I still can enjoy my Christmas tree...although its probably already drying up.

Daniel is a fighter.  Superstar.  Hero.    But the pain he goes through just doesnt seem fair.  at all.
I can't do this anymore tonight.

Here are some photos.....      Saying goodnight from the PICU....     Mom Julie


P.S.  Merry Christmas and Happy New Year!!!!   We never got our card out this year....www.amazon.com/gp/dmusic/mp3/player/ref=dm_ty_cp?fromTYPOrderId=D01-0102957-2488079#latestPurchases

Pneumonia and insane fevers

I sit here on December 20th, 2011.  In room 716 of CCMC in Hartford.  Listening to Daniel moan, cough, gag, go quiet...  Periodically the nurses or respiratory technicians come in for treatment.  Today was rough. After over a week of fever...  the fever was 104 this morning.  Rushed to Danbury hospital.  Diagnosed pneumonia.... and it was deja vu but worse.   And I sit here...listening to the buzzes and beeping of the hospital.  Wondering exactly what I should write....but its getting harder every day.  Scoliosis is worsening for my Daniel which means a surgery is probably imminent.    But its 4 days before Christmas...and I have nothing finished...  I don't even know if we will be home for Christmas.  I don't even know who I am today....  But Daniel needs me...he holds my hand and looks at me.  I know he's thinking...MOM WHAT IS GOING ON ....

If only I could take away his pain....but I can't.   Tomorrow I will get the blood results and x ray results...  We shall see.

HA HA HA normally I love holiday gatherings, cookies, giving little gifts, mailing greeting cards....and just loving the sights of the season.

Today I sit in a hospital... not caring about the sights...because all I can hear are beeps and coughs and gags followed by more beeps.

Please pray for my Daniel Hasselberger who has a left lung pneumonia with fluid  today.  We deserve Christmas as a family...even if we can't afford anything.

I joked last week that Daniel was my Tiny Tim...  But its not even funny now.

Back to bedside duty.  Mommy is totally exhausted. Hungry. Thirsty...but sleeping first.

I love all of the warm and caring messages that are coming our way.  Thank you, one and all.

jhasselberger@snet.net

Julie Hasselberger
35 Bennetts Bridge Road
Sandy Hook, CT 06482
203 4268674

Fever of unknown origin........

For days now Daniel has a fever. I looked at him this morning, breathing rapidly and yet smiling at me.  I feel sometimes like I am a Satellite hospital...  because there seems to be an issue every day.   I just wish for one week Daniel could enjoy good healthy and comfort. With his scoliosis and stomach and seizures it seems so unfair that we can all be healthy while he is so fragile and compromised.

I have no idea what to do about the holidays, but we have no holiday "events" other than the Nutcracker this weekend for Molly Tango Fund...    I feel like its a surreal kind of holiday season ...because I"m trying to enjoy the lights and festiveness. But I am also wiping up vomit and taking  temperatures.

Please Santa...remember us this year.  We need a little Christmas.  Daniel is going to the doctor today. Again.

Love ....Julie

My bad day

Today is Sunday December 11, 2011.  I'm tired from lugging up Christmas decorations from the basement.  My heart isn't into it. And my legs feel heavy. This year is not feeling like holiday cheer for me...not yet anyhow. Today as we were about to take him out for a walk...he projectile vomitted. Which is a huge problem, because he had a surgical procedure to prevent this from happening. Why? Because he aspirates when this happens. And I found myself right back in "Daniel factor" mode.... call the doctor, get the zofran, pedialyte, congestion? Fever?    As it is, I have to take him for a spinal xray this week for the scoliosis.  I feel like I am doing a good job with him....but there is always more you wish you could be doing.  Sarah and Thomas have wish lists...  and so most people, for that matter....but Daniel???   Daniel can't tell me what he wishes for.  He can't tell me when he feels nauseaus or if something is hurting him.  Day after day after day....he is 14 years old....and I love him so much... but today I'm ....well...just kind of blank and sad.  I know I have to pray. But sometimes...I just sit in the darkness.  and think.   We put the tree into the stand. Put the candles in the windows.  Even set up my Christmas village.  But I don't feel a relief from my never ending gut feeling of fear...  fear that something else is going to go wrong.  Fear about the financial pressures here.  Fear that I am not healthy and will get sick.  I guess its natural...when you live with a medically fragile son.  And I guess I just talked myself into every reason why I SHOULD be praying, right?


"Lord, please, grant me with the ability to stay motivated, stay positive, and continue with resilience to fight this fight I am in..  Thank you for the many many blessings you have given us.  Please care for the children and their families who are burdened so heavily just for the sake of wanting to live.   Thank you for loving me, and for giving your precious son to us...  Please God...help me to remember that Jesus is the best gift.  And in times that are so tight...he is our light and salvation...  thank you.  I am so humbled and grateful."


With love Julie

Last Year's Tree...    I have work to do still....

Now...back to Daniel's side I go.   Maybe tomorrow I'll put lights on the tree.  Maybe tomorrow I'll be in the hospital praying for healing.  Who knows.  who knows.

This weekend... we did Christmas ish things....like on Saturday we went to get the Christmas tree.  and Sunday we went to the annual "Dream Come True CT" Breakfast with Santa.  It was VERY VERY nice...

The Gifts of Gratitude, and bye bye Ba Humbug

I am currently reading a book called "Attitudes of Gratitude" by M.J. Ryan

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more.  It turns denial into acceptance, chaos into order, confusion into clarity....  Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."

HOLIDAY MAYHEM

Oh yes... I have found myself wondering if the materialism of the holidays is the reason I am so numb when I see a lit up house.  I just don't have my childlike love for lights and sounds and songs...and I am not sure why.  So I picked out this book...from my collection of lovely books about life.....designed to help me build character but I have never opened.    And began consuming the book.

I am sitting here realizing that my own feelings of lack... lack of money, resources, holiday events to attend, just a lack...  has got me so down.  And I prayed.  And I knew that I had to turn this around fast.   Gratitude, my friends, is the best way to take the self out of self-pity, self-worth, and just downright selfishness.

Ah...  I am no different than anyone else...getting caught up in the "I want that" ...etc.  I was the middle sister.  I was the girl who had the champagne taste on a beer budget...  and it still comes out sometimes...even though I have NO budget...  A girl can dream about a new car, furniture that isn't 25 years old and stained and broken, and maybe even a trip to get your nails and toes done...  Whatever the luxury.....

Shifting back to gratitude..I realize that I have so many wonderful things to be thankful for.   You know...listing them... is a good way to slap your brain around, shake your brain, tell your brain to stop the nonsense and grow up...   Here I go....  I am grateful for

• My Lord and Savior who loves me and who has opened my heart from a closed place today
• Daniel's ability to go to school healthy today
• Sarah's talented voice and mind 
• Thomas's funny sense of humor
• Tinker my Cat
• My friend Anna who is constantly reaching out to me...  XOXOXOX
• Our Kitten Theo and how much fun he is
• This computer
• A warm home to live in
• The generator that we are now able to give thanks to others
• The Donations that people have continued to send to help me with Daniel's needs.
• Breathing easily
• My therapist Pam
• My Mom, Dad, and sisters
• A warm bowl of oatmeal today
• Coffee... I will always be grateful for coffee
• My back yard that looks out onto woods and is really very serene and calming
• The freshness of the cold air this morning
• The smell of a woodstove fire
• Taking a walk down the country road near my house
• The trips we took to Naples because of the generosity of a cousin
• Toys for Tots boxes all over town
• Daniel...  and his incredible resilience...
• My facebook friends and local friends who always have kind and encouraging words to say
• The Scotty Fund, the Molly Tango Foundation...and all of the organizations that do so much out of their heart to help families in need
• Coffee. OH...I said that already.
• The smell of fresh pine.
• Christmas ornaments that are beach themed
• The Ocean...  being near water when I can....

I could list random wonderful things in my life all day long...  because once you start...its like opening the flood gates.  And wanting what you already have...is magical.

Perhaps we have a Tiny Tim Christmas...  and Perhaps the scrooges out there will turn their ways...  Perhaps today will be the day when I realize that my Christmas Spirit is in full bloom.

I am going to think of gifts I can give...that do not cost money.......  and I am going to have a good day today.

Here are some pictures of my gratefulness...