Vacation thoughts from home

Will I  remember the way it feels to step from dry coolness in a small condo, out into a warm, humid, sunny walk way lined with mini palm trees and other tropical plants? To walk across the driveway with the squeek of my flip flops and the smell of my sunscreen? Will I forget the way I always tried to see as many geckos as I could, those cute little lizard guys who live all about the complex just scittering and scattering about?  When you come home from vacation in South Western Florida to the "north we know".. its almost like someone plucks you from a dream and drops you harshly back into a cold pool, where there are no palms, no geckos, no amazing vegetation and spectacular sunsets.

Will I remember being able to say, "I'm going to the pool" and just go over to it?"  The white powder sand on the beach, and the 88 degree water that envelopes you in a salty floating paradise under a blue sky, will they fade away into merely photos?  Probably.

What I will never forget is the look on Daniel's face as he is mesmerized by the plane taking off, by the feel of the Florida heat, by the warmth of the ocean, by the lights in the ceilings, by the soft waves coming in and out leaving so many gorgeous white shells.  And Daniel's face as John carries him into the pool, wraps a pool noodle around him, and just floats around.  That look of joy, comfort, freedom, relaxation, and love.  Secure in Dad's arms he lets his body float, kick, and splash.  He bares a farmers tan from his rash guard shirt, and sports a few bug bites on his toes from rogue biting flies that get us all. That face so simple and gentle soaking in the world with his eyes and noticing intricate details of a typical day that to him are amazing. 

Seeing him happy is the reason why we do it.  If it were not for family who love us, we wouldn't be able to witness that joyful face in a place so different and so stimulating.   It is just pure happiness in the moment.  Daniel is pure happiness and truth in the moment too.  The rest of us are all wrapped up in our complications.  Daniel is just enjoying life as it comes and presents new things for him to experience. 

It's simple and completely spectacular. 

The "Julie" episodes

I've been a special needs Mom for 16 years and 6 months.  Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed.  My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.

But here's the "thing".  I am only human.  I also have two other "normal" children, Sarah and Thomas.  Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball....    And as they age and grow I proud just like other parents.   The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent.  My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness.  It happens quite randomly.  I can't control it.  It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent".  But I'm not.

On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students.  Thomas is ONLY going into 8th grade but he is allowed to participate.  He is so excited, of course, being the blossoming talented musician that he is.  And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid.  John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.  

And then, it happened.  The "thing".  Tears welled up in my eyes and my heart started to pound.  I can't stop the tears, so I have to let them pour.  I try to hide and slouch down, but my husband keeps whispering "whats wrong?  are you OK?"   I wave him away and say "just give me a second".  Because I am thinking of Daniel.  Daniel who will never march in a band, sing a song, play a cello, or write a story.  Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady.  Graduate, and go off to college where she is now thriving.   Daniel WOULD have been a senior next year.  He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.

I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing.  There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.

By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents.  These parents don't know about Daniel, most of them, so its nice to just be one of the crowd.  When I start showing up pushing the wheelchair, people treat me differently and the kids stare.  It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".

Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts.  I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form.  He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.

Yesterday was June 12, 2014.  One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system.  She is 21 and can no longer attend.  The school had a lovely ceremony and reception for her, her name is Emily.  It was a beautiful moment, profoundly happy and sad at the same time.  The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish.  9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly.  Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.

I must conclude with something that will change the depressing nature of this post.  The love in that graduation ceremony yesterday was something that you could feel in the air.  There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met.  It was a beautiful testimony to what these kids teach us, and show us.  It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds.  And her brave and dedicated family who have dealt with so many challenges.  

(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)

I have to have these episodes, its just in my nature.  It's just who I am.  And I never claim to be super woman who can endure this life with the strength of a giant.   I'm just Julie.  Failing and succeeding just like everyone else.  The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive.  That is a role I have gladly accepted, even with all of the sacrifices that it brings.  I am entitled to a good cry.  It cleanses out those feelings.

Thomas and some big brass, age 13 2014

Thomas is a budding musician
I often wondered what my youngest son would like to do as he started to find his passion.  Not surprisingly he has quite literally submerged himself into music.  I remember playing the flute at that age and it was the one thing that I was really good at.  It was also a place where I could lose myself in the music.

This is Thomas, as the video shows, he's pretty versatile.  This mother is very proud of her children, and especially happy that they have a love for creativity in music.  I am not kidding when I say that this summer Thomas will be playing his main instrument, Baritone Sax, but in addition learning trombone, bass clarinet, tuba, and baritone horn.  Sarah found her passion in strings, she's a viola player.  She also sings, and plays the key board and is learning guitar.

Sometimes on a nice day, if you are walking down the very wooded Bennetts Bridge Road, you may just hear the sounds of brass as Thomas practices outside.  He is a musician, smart, creative, and I love it.

Daniel watches his siblings, older and younger, and listens.  I am not sure precisely what type of music he likes the best, but he is fascinate by the different sights and sounds.  And sometimes, at a show, or a concert he will just find the ceiling vents and lights more interesting.

Would you like some comfort with that chaos?

Living and caring for a child with many disabilities is like living in the middle of a busy intersection blindfolded.  You don't know if taking some steps towards the side will be safe or result in a thwarting strike knocking you off your feet.  Most people sleep at night, wake up in the morning, resume whatever it is their life requires.  Some people know, for instance, that they will shower by 6:30 am, and be to work by 8:00am, have their lunch promptly at noon and leave their place of work at 5:00PM.  They know that they will proceed home, have dinner, watch TV and go to bed.  Throw in some kid stuff, or adult stuff here and there.  Whatever. But with my Daniel I go to sleep not knowing if I will be up again three or four times in the night.  I wake up and have to assess if he is well enough to go to school, and I have to wait to make sure the nurse gets here in time for the bus.  Sometimes the days plans change on a dime, and next thing I know I'm in an ambulance rushing off to one of many hospitals that we use.

 

Does the brain function well in chaos. No, not really.  I think as women, and as Mothers and as people we strive for the comfort of knowing where and when we will rest our butts on our sofa.  Mothers are often talking about the balance.  Finding the "balance" in their lives of work, kids, etc.  Balance is good.  It keeps us level, and when we go off balance we go wacky.  We get manic or we get depressed, overwhelmed and exhausted. 

 

Every once in a blue moon I find a few minutes to sit and think, like now, and I feel like I am roaming through a long hallway of doors, and those doors all have stuff to do inside them, but I don't know which one to open or go into.  Its as if I'm wandering like a lost soul, and then suddenly I am back with Daniel in his room doing "special needs Mother stuff".

 

Tuesday night, May 13, 2014 Daniel was doing well, and nurse Marques was getting him ready for the tub.  Suddenly his temp starts going up up up. by 8:00pm he was 103.  This is the kind of stuff that unravels my warped need for comfort, and balance. Where was I when Daniel had this freak episode which included a significant drop in his oxygen? I was next door at my neighbors house. She lost her 54 year old son, completely unexpectedly and John and were paying our respects and drinking tea. After that,  I thought it would be a normal night at home.  By 10:00pm I was sitting in a crowded emergency room waiting for Daniel to be seen, watching him feverish and breathing laboriously..

 

Its like that.  Unpredictable.  Unplannable.  Chaotic.  Raising Daniel Hasselberger, you see, is a lesson in walking on a balance beam.  With unlimited amounts  of wobbling and bobbling. 

There is very little time in my life for peace and relaxation and friendships.  Having more of that may restore balance in a life that has been falling off balance for so long.

 

I am, to many, a wanderer.  Following the tracks of a terrible condition that afflicted my child.  And quite quite literally I never know which way they will turn. 

 

 

 

 

Sunsets are beautiful, even from a hospital room

This is my blog.  This is my world that I write about. I am Julie Hasselberger.  Daniel's Mom.  Today is April 2, 2014 if you can believe that!  Honestly, I couldn't be more thrilled to see this past winter get lost. It was awful. All winter I raved about how well Daniel was. His strength was so impressive and not even the slightest cough or runny nose.  Daniel started new, and more aggressive physical therapy at a great place called Summit Rehab.  The past year and three months since his spinal surgery/pancreatitis has been completely without incident, illness wise.  Perhaps there was a slight seizure, but his brain is a wacky mess of electric inconsistencies, so thank God for the seizure meds.


Daniel recovering from pneumonia 4/2/2014

Today, Mom (me), renders me watching him sleep from this hospital room at Yale New Haven Childrens Hospital.  This story goes something like this. Had a great day Saturday.  Sunday morning he was retching, gagging, and trying to vomit. If you know anything about the gastroenterology world, Daniel has had a procedure called a Nissen Fundoplication. The Nissen actually prevents vomiting and reflux, with the intent of saving him from aspirating his own body fluids.  But when he feels sick and wants to vomit, he can't without tremendous force.   OK.  All day Sunday March 30, 2014 he retched and gagged.  He started running a fever.  He wasn't tolerating feeds, not even a drip of pedialyte, so long story short I called GI. And first thing in the morning on Monday headed down route 34 in wet slippery snowy slush to the Yale ED. 

Spent the entire day in the ED at Yale.  Had two visits from a lovely therapy dog named Jerry.  There is something wonderful about seeing a large furry friend in the middle of an institutionalized setting.   Especially when you are sitting in a room from 10:30 am until 5:30pm, just waiting.

Therapy Dog at work in the ED



Jerry the therapy dog at Yale

The Special needs Mom lesson for today is, you can not live in a world of complacency when you have a child like Daniel.  Viruses happen.  Aspiration happens.  When the good times come, like the long wonderful periods of great health, grab that boy and hug him like there will be no tomorrow. 

Dogs bring love. No matter where you are.




Raising a disabled child is a completely different journey that most people in "normal" families can ever imagine.  Every step, of every human life journey is unique.  But these special children bring challenges and changes that can destroy a person, or build a stronger soul.



Arriving at the ED....sick

Miserable guy

Non-verbal children try so hard to communicate with you in whatever responsive way they can.  For Daniel it is eyes, facial expressions, touch, crying, biting. 
  Cozy in a hospital bed





Trying to communicate with Dad through touch

 

 

The sunset is remarkable sometimes, no matter where you are.  This sunset on April 1, 2014 was spectacular from the 7th floor of Yale New Haven Childrens Hospital.  What a beautiful gift.

 

It feels as though the world has slowed down, or even stopped "paying it forward", or "being kind", please don't let it stop.  There are many people hurting, needing, and alone.  I will end this post by saying that I've been wondering for 3 days what is wrong with the tiny baby in the room next door that just cries and cries. 

 

Be blessed friends.  And now I go back to being "hospital room Mom" .  I will try to increase my blog posts.  Life sucks me out of all the things I enjoy. But I find my way back to them.

 

Julie Hasselberger  4/2/2014

Daniel Summit Rehab feb 27

Grateful hearts, prayers, loving gestures and soup

Today, is February 7, 2014

As a Mom I am often finding myself 
in a flurry of thoughts, ideas, concepts, things "to do", etc when the morning coffee has ignited my awake circuits.  And then the day hits in all its glory.  Get in the car, go do this, go do that, get back home, walk the dog, train the dog, make phone calls, clean dishes, laundry, get Daniels laundry done, make more calls, and then kaboom!  That ignition switch turns off and all of those wonderful little creative animals scurry back into the crevices of my brain to hide away until I can handle thinking of them again.

I get tired very easily.  To be a busy Mom is a giant job in itself.  And then to be a Mom of a 16 year old boy with a deformed brain, seizure disorder, gtube feeding schedule, daily therapy routines, nursing, doctors appointments, diagnostic tests, equipment, medication, and endless worries puts me right onto the ledge of "how much more can I take?"

I can't believe its February already. I truly do not understand where January disappeared to and honestly think there is some kind of cosmic conspiracy going on.  Then again, my memory has been questionable and my focus right there with it.  Those moments frustrate me when I see people in the grocery store who I definitely know and yet can not for the life of me remember why.  Usually hours later it hits me, OH YEAH, that's Jonie Smith, little Johnny's Mom from baseball 5 years ago. 

February has been walloped with snow this year.  This week as a matter of fact and that has been nothing short of a giant white chilly blanket of depression.  When you have a 4 week long sinus infection, and chronic fibromyalgia, the cold just stabs you like knives leaving you longing for a hot fire in the woodstove and someone to hug you. 

Its been cold too.  Not just normal winter cold but "ouch" the air hurts cold.  As I walk the dog along the trails we carve out for his little legs in the snow, the one thing I always notice is how brilliant the stars are.  Beautiful really.  I think it is the silence and the lack of leaves that makes the stars more pronounced.  Tonight the moon looked about half size and the snow was almost blue. No need for a flashlight.  My point, you ask?  By finding and holding onto the beauty and peacefulness I am able to sustain myself for the 5 minutes or less that I allow little Henry to pee or poop.  His feet get too cold.

February is suddenly here spitting out red hearts and chocolate displays for Valentines day.  On my desk of mess, lies a fold called "blessings basket".  Its pretty fat at the moment. It contains copies of checks, cards, gestures I've jotted down, and basically everything and everyone that I want to thank. People who have blessed our life with their kindness and loving gestures back to December, maybe even all the way back to Daniels WONDERFUL Birthday Card shower.  Each time I go into CVS or Big Y I look for pretty thank you cards, and pick up one or two.  I have lots of little kind words pop into my mind, and have so many things to say.  But I can't even get myself to comb my hair every day. Getting through this blessings basket is now my biggest goal.  I saw a billboard today with someone I know advertising their business, and thought to myself, wouldn't it be nice to just put Daniel's picture up there and say "THANK GOD FOR ALL OF THESE WONDERFUL PEOPLE WHO CARE ABOUT US"

Was it a pastor at church that gave a sermon about gratefulness that just stuck in my brain of molasses and fleeting thoughts?  Probably. The extremely important reality is the actual grateful heart that is inside my achy body.  Very grateful.  As I am writing this very blog, I wish I could record the sound of Daniel laughing hysterically on the monitor.  He is just happy, and looking around, like a silly teenager having a giggle fit because they are just so exhausted.  He has been strong this winter.  God's hands have held him with love and protection because not a single cough or fever has presented.  I am so grateful. 

There have been some spectacular miracles in my bubble, or on my "planet" this year.  Many of those miracles are simply people right here in Newtown and Sandy Hook.  People who read my words and realize that they are simply an expression of the love I have for my family.  It is difficult beyond measure to raise children like Daniel.  Some people have a hard time accepting help, accepting kindnesses from others.  But I know that God calls us to care for eachother.  Kindness counts and being thankful counts.  Through caring for others and through receiving care the concept of kindness is nurtured.  It is those who have least that often want to help others.  A thankful heart will do that do a person.  Many people just turn a cheek, because they have their own world to look after.  Each one of us has something.  A sick relative, financial problems, loss of a job, and the list is endless. 

I am digging deep for the words here to express the fact that God gives so much to us.  He blesses our lives with each other, with this place we live, with the food we eat and the clothes on our backs.  Who are we to hold onto everything and turn away from each other when there is need?  I do not just mean giving things, I mean giving of compassion. 

Daniel is a challenge for me.  I am 47 years old and I have dedicated my life to provide him with a life.  I am blessed to have him and he deserves my undivided attention and care.  All of my friends out there also with severely disabled children will nod a giant virtual nod when I say that the world does not help those who sacrifice themselves for the sake of others.  The money is sucked away from some big greedy money vacuum.  The cost of what medically fragile people need, and the stress it puts upon the families causes the unraveling of many families.  Sometimes there is barely money for food and gas.  Other times there is such lack of sleep and illness on my shoulders that I can't function.  There certainly are many days that I just fall down to my knees and pray to Jesus that I can't do this on my own.  He tells me to step out on faith.  I know He is with me.  The spiritual world is all around us.  We can see more miracles with a heart of gratefulness.  Try listing the things you are sincerely thankful for. That list will start with superficial things, and as you go on and on it will evolve into concepts, feelings and emotions.  Suddenly you find yourself thankful for someone who you have never thanked!!!  By thanking them, the karma is fed and miracles can continue. 

To end with a moment of thanks, my friend dropped off a bag full of frozen home made soups today at my door step.  It may sound crazy, but it was very exciting for me to have so many home made soups. I'm not the greatest cook.   But many hands made them, and I think that there is some beauty in that generosity.

We will continue on in the difficult journey.  I know that my pile is high and my burdens are growing.  We don't know where life will take us, because there is no savings plans, or retirement programs, or plans for the future.  There is only tomorrow.  If tomorrow Daniel stays healthy, happy and engaged in life.  Then that has to be enough.  Anything extra is a bonus.  We will probably never have that new kitchen, or leather living room chairs, or get rid of the 1970's wall paper.  But its only a physical house.  As much as I struggle with want, I aspire to being a person who is much more eager to give.  and to thank others.

Tomorrow I will try that Tortilla Soup.  Sounds delicious.

Special Needs Mom's 2014 Goals and dreams, bumping the track of stress

Yeah, so here it is. HAPPY NEW YEAR. 2014

Time to "start the resolutions"

When is minus 2 degrees outside the air hurts to breathe. I don't dare bring Daniel out because he doesn't regulate well.  So its winter and I get it.  We live in a place that is horrendously expensive and has weather that gets too cold to function in.  I wonder how many days out of the year I keep Daniel in the house to protect him from the elements. Probably alot.

The Holidays are over.  They were remarkably uneventful and relatively normal.  It goes without saying that the out going nature in me misses going to Christmas parties, out for dinners, and just doing fun things.  The big event was a trip with the kids to see Frozen.  Daniel really deserved to get out of the house and it was New Years Day.  That trip cost me $47 plus another $20. for food and that was WITH a free coupon for popcorn.   It is incredible to me to that many people go to the movies all the time.  Now, I LOVE movies, but have to watch them when they come to cable.  It's cool.  I almost never can get away anyhow.

Keys are falling off.

Crashes all the time

The holidays are usually a struggle and half ($$$).  This year we managed to get the kids a couple of things that they really wanted, but not everything.  It seemed like they were happy and satisfied and grateful.  Then there was the mysterious IPAD that was shipped anonymously by one of Santa's Elves to Daniel right before Christmas. The person sent it anonymously.   He loves it, and uses it for hours and hours.  The pay it forward, "acts of Kindness" runs rampant in this area.  I am so grateful for that gift for him, because there is no way we could afford one.  In fact, my laptop is an 9 year old Dell Inspiron that is slowly dying.  My dream lap top is a MAC book, because I would really like write more, and publish more videos.  My new years resolution is to become better at video blogging and making interesting videos.  However, it is virtually impossible on this old clunker.  My laptop is missing the R key.  What I type, I have to press ten times hard where the R used to be and it works.

Live to dream

I'm dreaming of a MacBook

Live to Dream

I don't know what to say about my goals and dreams.  I have them. Such as the big one, enroll in an RN accelerated program, start working out at a gym again, write down more information and ideas about how to take better care of Daniel, become a better wife and mother, get healthy,  and get myself a new lap top, and a new sophisticated video camera.   And I have already started the number one goal, which is to get my butt to church more often and make Christmas bigger than just the holiday.

So it sounds like its feasible yes?  It would all be perfect and I could be happier and healthier.  My kids especially Daniel would have a better life because I could provide more. I would have self satisfaction and self esteem improvement.  I would develop a new career that I love which would be flexible, that I could take with me to Florida someday. (SOMEDAY I DREAM)   I would look better.  I would sleep better.  I would have technology at my fingertips and it would allow me to do so much more for my family and for others.   So one of the biggest prayers I have, is asking God how can I get to this place when I don't have a

penny to my name.  The financial pressure and stress sucks my cash, and my energy. I have an insurance license for property and casualty but I completely dislike selling insurance.  I'm sick most of the time.  I am at least 70 pounds overweight.  The gym cost too much money.  Walking is ridiculously out of the question on a consistent basis. (um minus 2???)    I have zero credit because we are still dealing with serious issues from past debt and medical bills.  My cars are falling to pieces, well, mostly the Windstar.

This, my friends, is just an example.  Have a goal, hit a wall.  Have a dream? Feel it die. Want to progress? It all cost money.  But the real hard part is Daniel.  Daniel could be enrolled in swimming programs and be stronger. If I could afford it.  Daniel would have better therapy, and would go to external programs that would help him stand better, get stronger, move more.  Daniel would have more technology and more time for learning.  Daniel would be 100 times more advanced than he is, if I just had the time and money and health.   I look at him sometimes and I feel sick to my stomach because he has so much potential to do SO MUCH more and I just can't get to that point.

I DONT KNOW HOW TO CARRY DANIEL ACROSS THE GAP!!!!

People let me tell you something, it is not a cliche or a robotic repetitive whine when I tell you that I want so much for my family, my children, my life, my marriage, my community, my world.  But raising a human being who is 100% reliant on you for their complete life and needs, is a BIG DEAL.

All of the things I dream for.  Wish for. Try to plan for. Fall tragically by the wayside because the resources are so lacking.  Just paying the basic life expenses is rough.  You want to stay in your house? Well, yes, I do because the schools are outstanding for Thomas, and Daniel is still a part of the schools, and we couldn't sell it if we wanted to anyhow.  Plus it is modified for accessibility, partly.

Hear me. Please.  I have goals that to many would simply be the swipe of a credit card, done.  The writing of a check, there you go.  But I am stuck in a perpetual rythym of stress that prevents any of the next steps from progressing.  It's about money.  It's about health.  It's about exhaustion from trying.

My blood pressure is high now, and I am on a pile of medications for "stuff".  It's ridiculous because our medical costs are rising for Daniel, and for Julie.  It could be the other way around.  Yes.  A laptop, the mortgage, a reliable car, a new education, a commitment to health, and I will say, etc.   Yes my world would flip upside down if I could break the cycle.

But how do I do that?  How?  SuperMom only has so many waking hours.  Every penny is needed just to feed us and keep us warm.   How do I grab those dreams and push forward for my son.  FOR MY SON, when I can't even get credit enough, or a loan, or a job.   I rattle and shake myself trying to figure it out.  They say "you are doing such a great job taking care of Daniel Julie."  Thank you, I say.  But in my head I think NO.  NO I'M NOT. His hamstrings are tight, he needs to be in water, he needs to do more, see more, learn more.  There are thousands of things I could be doing for him.

And all I can do, is take a nap, and pray that my debit card works because I need to pick up prescriptions.  Perhaps there is a helping force out there that could bump me onto the track of my dreams and goals.  I was there once in my life.  Bump me into a place where things are possible, and my enthusiasm and hope returns. Perhaps in a Dr. Suess kind of world I would find someone to lift my dust spec up and save me.

It's minus 2.  My laptop just crashed twice.  My pointer finger hurts from hitting that R key.  I have stress because of the above mentioned things and I am going to spend the next hour trying to destress and get my blood pressure down.   Sigh.  Where is my bump to my dreams?

Daniels Finger Print Tree

December already? We just had Thanksgiving!!!!

December 2, 2013

A Monday morning it is, gray and dismal I think.  Adding insult to injury the septic truck just came and cleaned out our septic! Now the three words are gray, dismal, and stinky.  But somethings we have to do are simply stinky, but necessary.

Thanksgiving was alot of work for me physically.  I cleaned and moved furniture and sorted and cleaned again.  The fibromyalgia is so bad right now that I could hardly move on Thanksgiving morning.  But I overdosed on Advil and pushed myself.  It was nice to see family, and especially nice for Daniel who can see his family and also be in his home with his nurse.  Daniel is now 16 years old, and yes he had a spectacular birthday!!!  Lots of birthday cards came, and I am STILL working on them, but he has a giant mural of them in his room and some of them will be framed and put into scrap books for him to enjoy.  He loves looking at them.

I ate way too much pie.  Just had to say that.  After everyone had left, I had lots of pie.  I am feeling depressed so having a giant apple pie in my face was not particularly a good idea.  Oh well.

Daniel is doing pretty well. He just is not sleeping through the night.  He is having sleep study this month, to see if there is any apnea going on at night. I suspect, as does his pulmonologist at CCMC that he is having breathing issues at night.

Needless to say, I'm basically exhausted all the time.  When I can get a good solid nap in, I feel somewhat healed from the fatigue.  I did see a rhumatologist recently, but I just don't have the time to follow up on all of the things they want me to do right now.  I'm a pretty sick lady.  Kind of a hot mess really.  But I push myself through it.

One of the things I loved about the cards, was how many were sent from the support group families.  It touched my heart really really deeply.  They know.  They understand.  This journey is not a solo journey.... I think it is like a virtual giant NYC marathon of families all over the world.   We are all at different points in the race, but we are moving along facing very similar challenges.

Daniel is the love of my life.  As are my other children.  But he just has something in those eyes that is so pure, innocent, and true.  He brings out the best in me, that's for sure.

So where are we today, on December 2, 2013?  Daniel is at school with his nurse, Marques.  Thomas is at school at Newtown Middle School, he is in 7th grade, he's my little Baritone sax playing prodigy.  Sarah is back to college after 5 days home for the Thanksgiving break. She will have finals soon, and its amazing how fast the semester went by.  Henry is napping in his crate.  The cats are sleeping.  John is at work, he works at Hologic in Danbury, (breast imaging equipment people).  And Julie? Well....  I am sitting at my desk, in the quiet, writing.  By my side is an enormous PILE of bills, cards to send, and a list of people I have to call. Bloodwork, endocrine, flu shot, follow ups....  I am completely overwhelmed with how much everything costs, and simply trying to juggle it all.

I'm shivering.  I don't know why because it's warm in here.  It's all consuming, and quite depressing because I never get to the finish line of anything.  In front of me, in a file holder is a folder that says, "Nursing College", my biggest dream is to go back to school and get my BSN.  However, it is the farthest dream from reality right now.  I have too many issues in my house to contend with.

So carry on through this Monday morning, as gray and dismal as it is.  I wish I had the stamina to search Cyber Monday sales.  Christmas will just have to wait..

I'm sure I gained weight over Thanksgiving, when you are depressed, stressed, and have to walk on eggshells all the time, food becomes an obsession.  Yes, I need therapy with this obsession.  I wish I could get like, Oprah Winfrey, or Dr. Phil, or some famous person to scoop me up, put me on TV with all of my life story, and fix me.   I would love that.

Instead, I am going to spend time doing what is the best thing.  Praying.  Praying. Praying.  Time to go.  I need to upload videos to my Youtube channel, Julie Hasselberger.

Have a wonderful day friends.  Please do something kind for someone else today.  Acts of kindness are necessary food for the soul.