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...

Anxiety, insanity, and holiday non-cheer

Today is November 30.  And I feel like I am supposed to have holiday cheer. But I am not feeling it.  I don't feel like it.  Typically putting up the tree and "Christmasing" my house is a very exciting time for me. I dont know could it be....

That Daniel has had pneumonia...and this week vomitted and aspirated losing two days more of school. That his scoliosis has me worried because its rapidly progressing. That my list of things to do is so long that reading it makes my heart beat too fast.

Just surviving and staying in this house has been the biggest challenge this year.  And yet still I have managed to hang on.  And my kids are full of brains and talent...  and even Daniel is showing promise on his IPAD...

But its just too much.  I praise you God. I praise the holidays for the true reality of what they stand for. But I dread the exhaustion from making it "happen"...  and I just want to curl up....    I am also NOT enthused about snow after last winter.  It was horrid.  So I'm kind of in an overwhelmed mood.

Daniel needs a follow up at CCMC, and he is seeing Neurology for seizures on Friday.   Spent all day yesterday battling with insurance issues over his stomach medications.  And today I just want to cry.

December 1, 2011 is tomorrow.  And my spirit is deflated.  I need to focus on the beauty in my life and re align my attitude.  How do I do that when I am just so exhausted and frustrated.

Well..today I pulled out my flute and played...  for a while until my mouth hurt so bad...  and that helped me boost my heart alittle.

And take my mind for brief seconds off of the list....  Its a total nightmare.  

Happy Holidays my Butt.   Phew.

How Many Days Until Christmas???

Oh please.  I am not in the mood to see the holiday lights up.  If I see one more Christmas commercial on TV I am going to scream.  Its been a rocky road this year making it to December...and the last pressure I need is the societal pressure to spend spend spend...   I look at Daniel...and he can't request a single darn thing. He can't write a list for Santa Clause.  He really just loves the lights on the tree...the cheerfulness of the colors.  Its quite simple really...  he feels the cold air, smells the pine, watches the lights, and still asks for nothing but to be himself.    I wonder why our world has become so ridiculously consumed with spending so money on piles of gifts...  as a kid...  for me anyhow, it wasnt like that.  We lived in an apartment, had an artificial tree, and what we got for gifts...was simple...what my parents could afford.  Now the mall is a panick attack place for me.  And I am trying to avoid the push push push.   I have no fancy parties to go to.  Maybe some cookie exchanges or Angel swaps...  but as cliche as it sounds...  the holiday is about our savior.  Not the destruction of our financial stability.   Really... do people actually buy eachother mercedes benz cars for Christmas???    Really?

I have mountains of work to do for Daniel this week.  Mountains. A visit to the pulmonary group as a follow up after his pneumonia. Therapy...so much driving...  his lift needs a repair now that we got the crazy engine noise fixed.  Battles with insurance over all of his stomach meds.  So much.  So I wish the holiday demons would just go away...  its silly that they push selling cars, then they push getting a capital one credit card, then push buying every toy and appliance out there.

How about some nice warm socks.  Thats not to say a camera, IPAD, new laptop, or flat screen TV would not be nice...  but isnt this kind of a recession??

I have a medically fragile child..and all of those things mean nothing to him...in terms of his own personal want.

We could all learn a lesson from that.   I just pray that I find my holiday cheer this year.  Right now I don't even feel like decorating.  And that is NOT me at all.   I'm more concerned that the pneumonia could come back and when the surgery will happen on his spine...   Thats my reality.  Stupid TV commercials.

Kids who have received Dream Come True CT wishes...we had our dolphin swim and disney trip in 2010... this is the annual breakfast with Santa.  This years is coming up this weekend on December 4...I can't wait.  Its a blessing to meet these VERY special families...

I guess I should start reading more.     Signing off...cheerfully...  Julie

Happy Thanksgiving 2011

Sometimes it all seems so cliche.  We are so grateful... thank you for everything...  People all say it, but really we just eat a big meal and laugh alot.  But Thanksgiving for Daniel has nothing to do with a great meal.  He can't eat the way we can...his food comes in a tube through his stomach. So he sits in a house full of smells and sounds that he doesn't really partake in.  Its not easy entertaining and also making sure that his needs are met...   But he seemed to enjoy having company.  And we sang Happy Birthday to both him and his sister.  He had a pile of whip cream and a candle in it.  I gave him very very small tastes and he smiled.  He swallowed the first few and then he coughed...  and I never made it to the pudding.

We have had so much loss in our family, and trauma...  that just being together was emotionally healing.  No drama here... no family crisis...  just being.   And that was what I was thankful for.

Daniel's Birthday was November 22, and I promised him his gift from me was a healthier Mommy.  I've been eating to mask my sadness about other things in my life..  and its only detrimental to the strength I need to care for my children.    Pictures tell it all too, don't they.

Sometimes it just makes me sad...to see Daniel in his chair, off to the side...not able to eat, or run and play... he isn't listening to music, or texting friends, he just watches the world quietly.   A different world from what we all experience.

I'm glad Thanksgiving is over.  And grateful that my Mom and Dad helped me buy the food too.    But Daniel's van broke down, and I have to pay that bill too.  At least its fixed so I don't have to freak out driving to the hospital in Hartford.

Christmas is looming...and financially...its a pressure cooker...  But again, if I can just slow down and realize that simple is all we can do.  Then we will accept that.  I have to stay strong for these kids....  And I am truly blessed to have the things that I do.  Thanks to generosity of others...we have enough money now to purchase a generator.   That is just amazing.   Much love to you all....  Gonna drop a few a Thanksgiving shots into this blog post.

Keep in touch...  facebook me...  jhasselberger@snet.net     Happy "black" Friday.  The only thing black here, are the bags under my eyes.

Keep the Faith.. Julie