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. 

Coffee in my favorite Florida chair

In a white soft leather recliner, that swivels 360 degrees, I'm sitting with my feet up looking out a window at Florida.   Daniel is sleeping in a crazy but happy position in the bed I just got up from. When we travel one of the biggest challenges is where do you put a 16 year old disabled child to sleep.  Gone are the the days of bed rails and  pack and plays.  Usually he sleeps right up next to me.  Because he wants to cuddle up and be close.  Daddy is on a trundle bed at the other side of the room. It's like a camp.  The other kids get to have their own rooms and that's ok.  They are getting older now and need their privacy.

 It never ceases to put a numbing surreal feeling in my brain when I try to envision my future.  It includes the three of us, in this camp, or some other camp, so that I can take care of Daniel.  A far cry from the happy retirees I see down here in Florida enjoying their grandchildren, or just strolling hand in hand down the beach.   Our nest will always include the one baby bird who has no wings.

Florida has become, to me, a place of obsession.  I love the weather, the air, the water, the people.  Handicap spots are plentiful, and people are patient.  Beaches now offer beach wheelchairs, so Daniel can go take a walk down the beach, or just get right up to the warm water of the Gulf of Mexico.  The roads are lined with palm trees and the homes are very solid structures full of ceiling fans, tile, and Florida flare.  Sarah and I walked down to the beach with Daniel last night, I'd say it was about two blocks from this condo we are in.  He smiled and looked with fascination at everything he saw.  It is a far cry from Sandy Hook, CT where we can not walk safely on our own road.  

Coffee tastes better for some reason when I am rocking in this chair looking at some species of palm tree that has grown about 5 feet taller in the 6 or 7 years we have been bring Daniel here to John's cousin's condo.

I don't fear for his health and well being in this place, after all, its Naples Florida. There is a hospital near by, and a doctors office on every corner of some sort.

Sarah and I have been engrossed in episodes of HGTV all week and all I can say is that there isnt a show on that channel that I don't love.  I would just like to see an episode where they have to accommodate for a disabled child.

As my moment of peace is drawing to a close, I will add a few pictures to this post and simply end until later. Daniel has started making his "hey I'm awake in here" sounds, and he needs much care in the morning.  This white leather chair is my very favorite item in this entire condo.  Even if my moments in this place of peace are few, I will say that I thoroughly enjoy them.  Coffee just tastes better in this chair.

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.

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.

Florida Morning wake ups Life with Daniel

September 17, 2013

This is an example of the true joy and beauty that is my Daniel.  We had just arrived in Florida, where we stay at a family member's home.  Daniel was sleeping in the guest room, in a queen bed, with me so I could make sure he was ok and didn't fall out.

When we woke up. He was so cheerful.  He was absolutely thrilled at the fact that above our heads there was a ceiling fan.  Of all things.  Just a regular white ceiling fan, turning and turning.  He thought that was just about the coolest thing he had ever seen.

People work so hard to fill their lives with as much materialism as they can.  Forgetting what true joy of the heart is.  For Daniel, its about as pure as it gets.   He likes the breeze of the fan.  He likes feeling of swimming in warm water.  He laughs and smiles when things please him with no reservation at all.

It's beautiful.  He's such a blessing.

September's favorite fan on the sidelines 2012

This weekend I wasn't feeling well... as has been the case for a while, but I don't worry my family. So I needed much rest and naps.  Luckily I was able to do that.

I was recently reminding myself how much I love angels...

I believe these wonderful spiritual beings are real and are with us... I also have a nice little belief that whenever Daniel is looking at ceilings and the sky and smiling with bright eyes he is seeing an angel that we can not see.  Ever since he was just an infant he would follow something invisible above him that I could not see.















Today was one of those days when I could see angels in the clouds everywhere I looked.  Most people think I am strange for seeing angels in the clouds but I do.  I really do.  Its a wonderful thing to look for....

We took Daniel to see Thomas's football game in Danbury today, and Mom and Pop came over to watch too.  It was a lovely breezy sunny fall day...  and they won the game too.

Daniel enjoys going to the football games.  There was a day when watching other boys play and run freely used to break my heart in half.  I suppose it still does...  it always will...  but Daniel enjoys being outside in the action.  Listening to the sounds, the whistles, the cheerleaders, and of course watching the sky.

I ask you... if you are reading this... to imagine yourself not being able to speak, or express yourself, not being able to walk or move yourself at all.  But your eyes are remarkably acute...  you would be like Daniel...soaking up his world in other ways.

Daniel is a great fan of everything his brother and sister do.  He has no "thing" of his own.  Understanding and accepting that for Daniel and kids like him...there will be no football, baseball, 8th grade dance, plays, proms, sweet 16 parties...    He has no "friends" and he lives a very isolated world aside from the kids he sees in school and his family.  And church too, Walnut Hill community Church..when we get there (FOOTBALL)

I am blessed with this child... and his magic...but he will sit on the sidelines watching quietly as others achieve glory.  And after awhile... you usually catch him staring up into the sky or the trees or at the ceiling...  watching and maybe speaking with his own angel.   Someday my son Daniel, you will run and play and laugh and shout!  God clearly had special things in mind when He made you.  I am the one who has to figure it all out and keep my sanity in check.

Watching from the sidelines....that kid in the orange wheel chair with a tube attached to him and a nurse and Mom by his side....

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

I wish I could give him the world.....

Daniel At Hampton Beach 2009

Sometimes I wish I could give him the world.  The world as he see's it. He is so visual...and soaks things in with his wide eyed curiosity. But he can not speak.  He loves going places..like to the beach...or to the mall..      

School Picture 2010-2011 STARR Program