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????

Father's Day and Swimming

Daniel has been doing well...  so far no illness or setbacks in our quest to quench his weak bones with phosphorus and calcium supplementation.  He will have blood work at the end of this week to see how much  progress has been made....and the surgeon for the scoliosis surgery will consult with the bone doctor (endocrinologist) to see when surgery will be possible.

Still having alot of doctors appointments, and dentist appointments and normal daily life.  Dealing with insurance, and equipment suppliers, and wheelchair repairs, and lift van repairs, and medications (oh my Gosh so many prescriptions) ...  its a jumble of non stop multi-tasking.  

Throw into this salad of life....  managing the life of a soon to be senior in highschool and a soon to be 6th grader...a house, and trying desperately to earn money with whatever spare part time work I can find.  Its a recipe for insanity.

But one saving grace has been the YMCA of Brookfield. They have a financial scholarship and we have been able to take Daniel to the therapy pool there several times a week to swim.  He loves to swim...his body responds miraculously to the water.  

This is the last week of school here in Newtown, CT... it officially ends this Thursday the 21st.  Then what?

Mommy anxiety is still at all time high...because just when I seriously start considering going back into Human Resources (which is not my desire, but my backgound) they all tell me ..."sorry, even with a masters degree and 15 years experience...you've been out of the workforce for 10 years and we wont even look at you"    Its kind of humbling, because you work so so so hard to become the best and the brightest you can be...and then you have to go away to be a full time Mom to a disabled boy...and BOY with that comes more advocacy and intelligence than ever.  But they won't even talk to you.  WHAT IS THAT!!!!!

So I  keep on going... taking care of these kids.  Praying for miracles. Praying for daily strength and good health.  Many blessings are here...we just need to see them.  Here are some pictures from Daniel's swim on Father's Day with John.  Swimming with Daniel is a great joy for us...

Spring has given way to summer...already

Today is May 30, 2012. The end of May..and its already hit 90 degrees..  Daniel's air conditioner in his little room keeps him cool and comfortable and breathing well. (while the rest of us sweat to death)

So many things to be grateful for...  I have to mention the luncheon we were invited to on April 29, in New York.  Carl Banks was the guest of the luncheon, and he signed autographs and t shirts.  A friend of mine, Marc Pintel has a non profit called Pintel for the Homeless, and he invited several local charities to attend, but also included Daniel and our family.  We were very honored, and it was a very nice day.  Marc presented us with a check towards Daniel's medical expenses and treatments.  It was very special to have someone reach out so unconditionally to help us.  And it was very cool to meet Carl Banks too!!

And then, in early May I was invited to the Mother's Day luncheon of the Molly Tango Foundation.  What a wonderful annual event they have to raise money for the foundation which helps disabled children and their families.  Currently, they have helped us with expenses related to the maintenance on Daniel's van..new tires, lift maintenance and badly needed lift repairs!!     The Molly Ann Tango Memorial Foundation continues to grow in its giving throughout the Ridegfield/Danbury/Newtown/Bethel ish... area..   So amazing...  these people....

And here it is...  as I sit...and think.  The end of May.   What is going on???   Well...

Daniel continues to have intense supplementation of calcium and phosphorus and will have tests done in about two weeks to see if there is an improvement in his bone strength.

He has been gaining weight, up about 5 pounds...  but at the same time his Wheelchair is getting too small, his braces are getting too small, his CLOTHES are getting too small.   This is a blessing and a financial curse.

Daniel is swimming again, thanks to a scholarship at the Brookfield YMCA which allows him to have a membership for swimming in the therapy pool.  We have a dream of being able to have our own therapy pool.....but of course that is just a dream....  but he loves to go and swim.

Summer is just around the corner...and my brain is full of a million issues to resolve and things to do for my children.   But with Daniel the management is at a greater level...  equipment, therapy, school, medications, appointments, supplies, and it cycles...     His scoliosis is worsening...  the curve is very evident when you look at him.   We just pray that Yale Endocrinology can help us get him stronger....because surgery is inevitable.

Out of the rumble and chaos  that goes in my mind daily, as I try so hard to keep things going and keep things taken care of...   comes a grateful heart for the people in my life who continue to help us with Daniel... teachers, therapists, nurses, friends.......  so many people just adore this boy who calls me Mom.

He needs so much....and he asks for absolutely nothing, except a smile.

Praising God for the goodness in my life and that his blessings will continue to pour out upon our family.

Happy Mother's Day 2012

I had a very nice Mother's Day. The family made me breakfast, and showered me with pampering gifts.  Even Daniel made homemade Lavender Body Scrub at school for his Mommy.  I spend so much time engrossed in thought. Thought about Sarah and her future and all of the things she needs me to do.  Thoughts about Thomas and his activities and how to best enhance his young 11 year old world.  But Daniel is on another level all together.

Daniel requires around the clock attention.  And now, he is under close supervision of doctors because his bones have been found to be demineralized and they are treating him with calcium and phosphorus to strengthen his bones.

His spinal fusion surgery needs to be done. But can't be done...until Fall...  which means a summer of trying to make this very curved boy comfortable.

I'm budgeting, managing, cleaning, calling, emailing, reading, organizing, and DRIVING places all week long.  My health is suffering too right now....but I find that I can't pull myself out of the depression long enough to motivate myself to care about myself.  There are simply too many people who rely on me.

Which makes it a form of irony....because if I don't take care of me...who will??    My Mother's Day gift to myself is to try...to really try...  to focus on becoming healthier.  Despite the criticism, skepticism, and calculated  pain...  I have to look the other way and realized that I am important.   That I matter to my children....and it's time to teach them how to care. By caring for myself.

What a concept.  Most Mother's of disabled kids can probably relate to my world...to my loneliness, to my feelings of being a person who has lost themselves completely.

Its not so easy to find yourself again when the negative world stomps on your dreams.  But it is possible to take baby steps towards the direction of your dreams...while still being the best Mom you can be to your children.

Even taking the five minutes to blog today....  made me feel like I've patted myself on the back.

Now ....back to the hardcore reality which is Daniel's medical issues!

I hope all the Mom's that read this post....had a Happy Mother's Day!!!  There is no greater gift than to be a Mom.

Julie
5/14/12

BONES and a Pile of challenge

The latest news regarding Daniel's spinal fusion is a problem that has come up...with his bones.  I received a call from Endocrinology telling me that his bone density tests are poor, and that his phosphates in the bones are low.  He needs to have a series of tests, and then some kind of therapy for the bones before we can even schedule his scoliosis surgery.

Will there ever be a time in my life when things are not so complicated?  It just seems like one issue blends with another issue...then something else springs up...and I am chasing my tail in circles like a crazed dog!

This week was April Vacation and Daniel's Spring allergies went through the roof!  Itchy eyes, runny nose...just miserable.  He needs that like another hole in the head. But one more thing to manage is just one more thing to manage.

As I reflect now on what is coming up it seems daunting.  The process of helping Daniel to gain weight, to strengthen his little bones, to keep his allergies in check, to prevent him from aspirating saliva, and on and on and on.  

And yes...I have two other children who need me as much as any child needs their Mom. But I have an unequal attention span....  call it... another challenge to add to the pile.

Hoping that the "GoFundMe" account will start helping with fund raising...its so hard for me not being able to work.  I feel like I'm losing my flipping mind trying to pay all the bills...and budget for the unknown crazy future.  I keep praying that somehow we will be provided for...so that we can focus on the pile of challenges.  But the financial crap just heaps right up on top...pressing down...  unrelenting.

And I think again to Daniel's skinny little legs and arms...wondering what we will do if he is too weak for his surgery.  That is a reality I can't quite sink my teeth into....and my head is still spinning the Vertigo.

Please, if you read this, say a little prayer for my sweet little 14 year old angel that his body will be strong enough to make it through spinal surgery.....even to make it TO spinal surgery.

*****   On the subway, when I took Sarah and Thomas into the city last Friday....a man and his friend were singing Bob Marley... "No woman, no cry"... " everythings gonna be alright.  everythings gonna be alright"  and I've been keeping that tune going in my tired head.

Vertigo

Currently waiting to hear back from the surgeon regarding the date of Daniel's much anticipated spinal fusion surgery.  Not surprisingly, right after the meeting with the surgeon I felt tremendous stress and anxiety. I'm terrified, because its their job to lay it on the line... here are the risks...  1.) We could lose him.   OK...that's enough for me.  You got me scared. But alternatively, if we don't do the surgery, his lifespan will be shortened. OK. now what choice do I have?  Let's put it into God's hands and keep praying.

Right now I'm suffering from what, apparently, is called "Vertigo"...and I am so dizzy I can't function like a normal human for a few days.  I feel like someone just spun me in a thousand circles....the room spins....and I end up feeling nauseous.  Worrying.  Wondering.  

So many needs.  So many pressures....  my world is spinning....literally.   The kindness of others and the support of community has kept my hopes high that this too shall pass.  There will come a day again when things make sense and there is time for relaxing.   I had a dream last night that we were in Florida....at Lovers Key...collecting shells along the shore....warm sun and nothing else but the smell of the ocean and the sand in our toes.

We have a place to go, a wonderful place...a family member has a wonderful condo and her generous heart lets us use it.  IF we can get there.  And I just wish there was a way to get Daniel down there for one last trip before his surgery.  One last trip to swim and laugh in the warm Florida water.  One last escape from the reality of ALL the crazy pressure that has started to degenerate my health.  Warm sun and just "whatever"....  

Maybe a miracle will happen.  Maybe somehow we will find a way to get down there with Daniel....  Maybe then we will be more emotionally ready to face the risks of this very tricky surgery.

As I sit here in my state of vertigo and feelings of motion sickness....I can't help but wish that they were real motion sickness...on a plane...headed for Fort Myers Airport.

Prom Time

On Friday, March 23, 2012 my daughter put on her gorgeous blue strapless dress and got together with a large group of friends to go off to their Junior Prom.  It was amazing to see how grown up she looked...and I was very proud as they all got onto the bus laughing and smiling and headed off to the Villa Bianca for a night of formal festivities.

After Sarah left, I thought about the fact that Daniel...who would have been a Freshman in high school under normal circumstances, will never go to a Prom.  I had a sudden gush of SAD.....  which happens from time to time.  Daniel does not have a large group of friends, and he doesn't even have the ability to know about girls. He will, as my plan dictates, be by my side....and with me he watches his siblings experience all the normal joys of life.

I'm so proud of them.  And I wouldnt be human if I were not sad about the fact that Daniel's life is encapsulated in a world where there is no talking, no walking, no "normal things"

How do you cope with that?  Well...  I pray. I pray for God to give me the power and knowledge to give Daniel's unique life the best quality that I possibly can.  Its hard, when you don't have any financial resources and its hard when you still have to manage and help your "typical" children engage into the world and their future.

Prom.  So normal....yet so special..

Now I'm having an emotional meltdown so I think I will end this post until next time...

Julie

Mom does have an education, where did the career go?

About 9 years ago I was an up and coming HR Manager with an MBA and a strong desire to learn and implement everything there was about positive change.  I love working in the corporate design of succession plans and strategizing with Management over goal accomplishments.  I also had an open to door to employees who needed help, had questions, wanted to talk.  I worked hard, and I LOVED Human Resources from both the technical side of systems and technology advances to the people side of employee relations and benefits. I even topped off my resume with OSHA consulting and Safety Management within Manufacturing.   My salary was great, because I was a positive contributor and never turned away a challenge.  Exemplary performance reviews coupled with bonuses that helped keep our family going.  

I had dreams of moving up to a VP of HR one day, and always had hoped that somehow I could transition myself away from manufacturing and into medical technology.

There was not an association or program about Human Resources that I wasn't affiliated with.  I truly loved it. I still do.  I miss it.

But I fell off the planet when my company "downsized" my position and gave my job to another senior level employee.   I interviewed diligently and I was flown everywhere, had countless meals and meetings...  in 3 cases that year (2003) I was ONE of two finalists.  Always beat out because I was the younger of the two and had less global experience.

Now....today....I have been reflecting on the pain of having lost my job. And the pain of realizing that the job search world was a cold hard war.....  And that Daniel's needs pulled me into another place in my life.  All the while living with a spouse who feels that I "sold OUT" by not going back into a full time HR Role.

I don't think I sold out.  I think I realized that all of the education and work can't replace advocacy and the BATTLE which is from a different war. The war of maneuvering the system of special education and disability needs.  Not mention being THERE for a sweet little boy who needed his Mom over the span of many years full of surgeries, and doctors visits, and hospitalizations, and tests....etc etc. etc.

But as I sit here today, reflecting, I realize that I could walk into an HR office, and given a little bit of leg room.....pick right up where I left off.    But they won't even call me back.   So why even keep trying.

The world punishes you for being a dedicated career woman who chose to side track and dedicate herself to her special needs son.  A Mom...  just trying to give this boy a great quality of life in a catch 22 world that puts a GIANT price tag on the disabled and strips a career Mom of her ability to embrace her years of training.

And I have days like today, where I wonder which way to go.  I have a passion for the medical world, and GOD would I love to go back to school for Nursing.  There is a place where all of my skills would embellish a new trade.  I have not a sqeamish bone in my body and I'm a tough ass when I need to be, but I love people and have passion that spans all kinds of situations.

I have a need to make money....because we can hardly pay the bills, make the mortgage, and our cars are petty decrepit. My daughter is facing college soon, and Daniel needs so much.  Keeping our home, and keeping our sanity ride on the same level of importance.  And both have been a massive struggle....

So Where Did THE CAREER go...or is it simply in a state of metamorphosis.  How can I find my way back into nursing school, and actually be able to afford it...  Is it possible for me to make that dream come true, because I do have time for school...  and time for flexibility.

I feel like my family needs me to be the best I can be.  But I struggle with just exactly how to get there when they also need all of me at the same time.

What do you think?   Jhasselberger@snet.net or text me 203 788 9602   Julie

Lungs and Love and Atelectasis

It is Monday morning, February 27th 2012.  Today I had to take Daniel for a stat x ray to check his lungs. He was having "crackles" this weekend and strange breath sounds.  So off I went in a mad rush to get the x ray done and try to get to work at my 4 hour shift at the deli.  Life is always a mad rush for me.  The x ray doctor said Daniel had a Left lung ATELECTASIS.  That is my word for the day. Atelectasis. So I looked it up, because Daniel has had it before.  Kids with progressive scoliosis start to have more compromised respiratory issues.  And here we go.  All I want is to keep this kid healthy so he can make it to his scoliosis surgery...which will resolve the problem of the dreaded "Atelectasis".....  


I have this vision of Daniel being able to hold himself up straight without curving over to the left. His curve is so awful to look at. I miss his straight spine, which was there until about a year or two ago.




Symptoms
If atelectasis involves just a small number of alveoli, then the symptoms may not even be detectable, but if it grows rapidly then it may cause an acute condition of 'shortage of breath'. The level of oxygen saturation in people suffering from this disorder is also less. The loss of deep breathing also causes the heartbeat rate to increase. If atelectasis has been caused because of some other disorder that the patient is suffering from, then the symptoms will be similar to those of the existing ailment. It is very likely that a patient suffering from this condition will lose his energy and stamina. Cough, fever and pleural effusion are some other significant symptoms of a patient suffering from atelectasis. A very unlikely symptom, in cases of people suffering from an acute condition of atelectasis, is a bluish skin. This happens because of reduced oxygen level in the skin. If atelectasis is not treated and continues for a prolonged time then it may result in lung infection




I'm feeling alittle bit sad today.....because sometimes everything just seems gigantic and insurmountable and I want to curl up and give out a giant cry. But I go forward, and I keep smiling and I keep trying to provide the best quality of life that I can for this child.   Because I AM THE CREATOR of what he knows in his life.

And that is a big responsibility...  and a labor of great gigantic love.

***************************************************************

Gaining Weight and thoughts for Sunday

Daniel is only 64 pounds at the age of 14.  We are on a tough mission to gain about 10 pounds and get him in a better physical state to be able to endure scoliosis surgery.  He honestly is very very thin, but a g tube fed child who has limited ability to tolerate large amounts of food in his stomach due to severe Gastrointestinal Reflux...is a hard child to fatten up.  Today is Sunday and John took the boys to the park for some sun, a walk, throw some balls around, etc.  I love to see Daniel just enjoying a day without any illness....but I am counting the days since our last clear x ray. (Wednesday February 15, 2010)    SO...its been 4 days officially pneumonia free.  We need to go 4 to 6 weeks.  Wish us luck on that challenge. Daniel chokes on his own saliva.  It doesn't appear that the botox injections given to control the saliva are making any kind of a difference.

But for today, I will be grateful for a healthy and smiling Daniel.  He is showing signs of being irritable on and off.....   BUT who wouldn't be if their spine was 50 degrees permanently curved sideways.

There are some days when I have a reprise from the intensity of my stress...today was one of them. I enjoyed time at the mall, and have been prom dress shopping with Sarah...   A big gift to me...is just some normal kind of days.

The Road to Spinal Fusion Surgery...

Daniel had a consultation with Dr. Brian Smith at Yale last week. He is being prepared to have have spinal surgery to correct his ever worsening scoliosis.  This will be no easy task. The boy is 14 years old and only weighs 64 pounds.  He eats ONLY via g tube...and therefore his nutrition has to be adjusted.  In addition, he needs to be pneumonia free for 4 to 6 weeks.   I'm having nightmares and awful visions of the post op recovery process. There are many risks for Daniel...they made that clear to me.   So over the next few months I will be talking about our road to surgery for the boy who is so badly crooked and bent to his left side.  Sigh.  I don't know how to process this.  Blogging helps...  to settle the anxiety.   Its a HUGE surgery..over 8 hours long...........

Pneumonia. Times three.

Here I sit again.....while my sons lungs try to recover from another infection. This is the third pneumonia admission in three months. I know that it's a chronic problem. It's also a very fearful one. Sitting all day in a hospital room starts to wear on your sanity after awhile. All of these antibiotics and why does this child have to suffer so much. ? Yesterday on my way bringing Daniel to the hospital I saw a bumper sticker....it said "psalm 91". Which made my weird mind think of TUCK number 91 for the NY Giants. I ordered Thomas a jersey and I hope it comes in. But , yes, alas I did review Psalm 91. And it is so appropriate as we sit here fighting infection. Friends and family make this so much less of a burden. And I am thankful beyond words for the continued support...food, gas cards, money, visits, phone calls, cards, and especially the prayers and love. Daniel has a very long road to travel. A very very serious spinal surgery will straighten the spine to put less compromise on the lungs. But the surgery itself is terrible and getting through recovery will be crazy. For now, we sit at CCMC in Hartford fighting off the infection and I am missing my normal life. I miss Sarah and Thomas. Daniel was supposed to get a haircut today.. Such a normal thing. We just can't seem to get there. Or anywhere. I am so worried about this boy. Pneumonia is terribly dangerous. This hospital incarcerated Mom is now going to try to nap..... No sleep to be had last night.

The Support Beam.

The feelings I contain do not prevail in relevance
I'm in this on my own
Alone and holding up the camp of many others
I place both hands upon the ceiling
And with what strength I have left I keep the building steady

And they come and and they go
And they laugh and they fight...around me

But I am here. They have no fear. Until life is faced without me.

Julie Hasselberger
1/18/12

What will happen if the roots give way???

Dear God,

I pray today that in my weakness which is also my strength you will lighten this load that I hold up. My shoulders are so tired Lord. My hands are aching with the pressure of just holding up the needs of so many. Lord you gave your son so that I could be saved. How could I possibly be worthy of that. Lord I humble my needs and humble myself and ask that you forgive me and hold me up as your daughter.  I know Lord...deep inside the depths of my heart that I may be holding up the fortress of these figurative walls...but Lord you are beneath me. My brace. And I thank you. I praise you. I give all I have and all I am to you Lord. Its been a rough ride lately...with illness and financial pressures and struggles that just hurt the heart and test the soul........Lord...you readily have proven, justified your goodness and you have provided and sustained me.  Today my therapist told me that my current life...they way I am living emotionally is mentally "unsustainable".  And I just pray Lord that you will help me process this.  I do not know what to do. I need you Lord.  I know you hear prayer and through the magic of my words I present prayer not only in my mind but in my words.

Look after the children this evening, Lord... the children who are suffering...who can't speak, who can't eat, who have trach tubes, who have trouble walking, who can't walk at all, who are disfugured, who are deaf, who are blind who are g tube fed....or who have emotional scars that are tearing their little hearts apart. I pray for the children...and I pray for the caregivers that you will touch hearts and move mountains.  Make your miracles known Lord... please.  This is my prayer.

In your glorious name.

Amen.


January18, 2012

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