DANIEL SAYS, "COME PLAY ALL NEWTOWN KIDS!!!"

Daisies, Murder, Therapy and scary bat

Lucky Penny

The lucky penny.  Whenever I see a penny on heads, I pick it up, say a prayer for financial protection and keep it.  If the penny is on tails, I turn it over and say a prayer for the next person to have the luck.

Life as me, is complicated.  It's a journey filled with twists and turns, details and management, and so much to do and work on.  In the midst of what I call "Daniel business" I often get so overwhelmed and have to sleep.  I do pretty well when I know that there is enough money to cover the household bills, groceries, clothes, insurance co pays, gas, that kind of stuff.  But every once in awhile there is a time when there just isn't quite enough.  It is in part due to the focus of my attention.  When I have some money and can relax I then get my head wrapped around the details and perplexities of Daniel's situation.  It truly is, without a doubt, quite complex.

When I run into crisis, like when I can't work due to work cutbacks, or lack of nurses, its a spiral effect.  And then Daniel needs wipes, supplies, etc.  Something happened to my cash flow.  I have to go back through 1000 transactions and bills to figure it out.  Life adds up so fast.  Especially here in this part of the state.  I am a full time caregiver first and foremost.  I do not get paid.  I get debited.  Its rocky now, because my fragile child is 16.  Raising money for his needs and the survival of our support structure was miraculous when he was little.  Today, I don't know what to do because there are very little responses.

This is one of those mornings where sleep is sounding better and better, and its 8am.  My husband and kids are sound asleep, snuggled in.  Daniel and I are awake.  Henry too.
Sunday morning should be a time of rest and family.  All I can think about is how can I get money back into my account.  Switching to a new health insurance coverage plan has required that I pay for every bit of mental health treatment up front due to a huge deductible.

Money is a stress that eats at your mind and heart.  It causes anxiety.  And when you have it, it provides relief.  Being a one income family so that I can care for Daniel is a choice we made.  Today, it would be incredibly to be able to concentrate on Daniel, but instead, I'm worried about not having enough money for my husband to do the things he wants to do.  I really do need help.  I don't feel invalidated, because I have this child who needs 100% of his mother.  But the people who could help, ignore me, because I've needed help before.  in the awkwardness of life, how do you let people understand that Daniel's condition is worsening not improving over time.  The need is there.

Have a tag sale? So much work.  Oh man.  I will just pray that things will come together.

Daniel is laughing right now.  Its a happy, belly laughing cheerfulness.  Priceless this kid.  I don't know how, but I am going to believe that somehow miracles will persist, even as time goes by and we all get older.  Miracles are for everyone, not just when they are babies.

Time to have more coffee and fight off my insidious depression with a dose of Daniels laughing.

Mr Incredible, my story and some dog fun

Shananigans and fireworks

BYE BYE FLORIDA

Naples day 4 trouble in paradise

The dynamics of a family on vacation are really a study in interpersonal relationships.  It is a process, you know what I mean right? The preparation time, so exciting! Getting on a plane and anticipating going far away for a nice long period of time.  Then you arrive.  This is where I have to stop for a second, and add in this paragraph.

Travel with a medically fragile child who just had a serious seizure two days before leaving, by the way.  Early preparation is key.  That includes making sure all prescriptions are filled, (like 12), all supplies are ordered in a quantity to suffice for vacation, shipping several large boxes of diapers, pads, wipes, formula, g tube feeding supplies, pulse ox monitor, nebulizer, swimming gear, and waterproof mattress covers.  When that is done in proper timing as to meet you upon arrival, you then proceed to the packing for the child.  That includes having rescue seizure medications in an accessible place and enough food to last a full day, just in case.  Travel necessities also include a thermometer, portable pulse ox, and blood pressure monitor (which sometimes I need also).  The bags are packed, the drive to the airport done.  Luggage checked. 5 boarding passes in hand.  And its security time!!!  With a 16 year old in a wheel chair, the process is almost comical but necessary.  The swabbing, scanning, poking and prodding all around the child and his chair is, of course, necessary.  The family of 5 completes the complex security screening, usually about an extra 10 minutes, puts the boy's equipment back together on his chair and proceed to the gate..  WHEW.  Almost there.  We have to change Daniel's diaper before the 3 hours flight, so finding a companion bathroom is done.  If Daniel has a BM in there, its a sweaty workout, on a floor, with pads and wipes.  Then we put TWO  diapers on him, so he doesn't leak, or GOD FORBID poop on the plane.  Make sure we don't forget the drooling towel either.   And its back to the gate we go, lots of people staring but I just smile through the sweat pouring down my face.    I go to the girl at the counter and check to see if there is any chance that our family can sit together?  Daniel, because of his condition, always sits in the front with me.  The remaining family goes to the back somewhere.  It makes my son Thomas sad, because we rarely travel and he wants us all together.  So, once we are turned down for family togetherness, we wait for the call to board.  We are always, I mean always, the very first people to get on the plane.  (And YES we touch the plane for good luck, even Daniel)  The wheelchair and the wheelchair tray must be gatechecked with a big lecture on how to be VERY careful with the chair because it doesnt fold up and costs more than a car.  Then a JetBlue employee wheels Daniel to the door of the plane.  Sarah and Thomas go in first to find their seats and get settled.  Then I go in to be ready to receive Daniel.  Dad carries him past the smiling flight attendants and plops him into his seat next to me.  I must then make sure he is positioned appropriately.  Thank you Dr. Smith for that spinal fusion, because Daniel sits MUCH better without scoliosis.  There is much shuffling and settling.  And then, we wait.  Upon take off Daniel starts to scream and bite.  The flight attendant leans over and asks if she can help.  I get his medicine bag, and give him some attavan just in case.  I also hear people around me buying headphones and I feel bad.  The screaming is quite loud.  I put my headphones on his ears, and plug into a TV show.  He calms down.  I order a coffee and breathe.

OK.  Where was I?  "then you arrive."  Everyone is excited, and they unpack and start thinking about what we are going to do.  We stay at a family member's condo in Naples, and its very accessible and convenient to properly care for Daniel.  It's also in one of the most beautiful places in Florida.



By about day 4, things start to get a bit snippity, and personalities start clashing.  As a Mom, I try to do the best I can to help each and everyone of my 4 family members with their concerns and complaints.  The reality is, however, that Daniel comes first.  His meds, his pump, his changing, watching for seizures, and keeping him engaged and entertained.  There are times when I just start ignoring the ridiculous rants and negative lectures and let my mind escape to the details of the beautiful plants and flowers that exist only way down south.



During this recent 10 day trip to Naples Florida, thanks to our wonderful cousin who generously helps us experience vacation with Daniel, we went through every stage of everyone's personality.  Mine too.  I turned into a pouting brat when my family opted for the pool one day over the beach.



Even under the worst of circumstances, ie. having a medically fragile child to bring around in a wheelchair, their personalities still emerge and it is a refreshing blast of "yes, we really are a normal human family."

Taking Daniel to Florida DAY 3

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.

ANGEL IN THE TREES

Did you do that paperwork today?

" Hey Julie have you filled out that paperwork yet?"   No, not yet child.  This is why.  I am going to run through my typical day.  Having caught an article recently that stated most people have approximately 5 hours of leisure time a day, I just didn't see how that was possible when you are the Mom of a disabled child.

So here goes.  Ready set go.  Starts at 4am when Daniel typically wakes up laughing.  I go to his room, change his diaper, and settle him down.  Back to bed if I'm lucky.  If not, then coffee is on.  Take the dog out for his morning business.  Help Thomas get his breakfast and get onto the Middle school bus at 6:30am.
Come back inside and feed the dog.  Unplug Daniel's feeding pump from his belly and set up a fresh bag for the day.  Get his morning medications ground and dissolved, give a breathing treatment if needed, give medications through the g tube, also known as the Mickey Button.  Cute.  Get Daniel changed again because he goes alot in the morning, then get him dressed for school.  Lift him into the wheelchair.  Buckle, snap, and velcro him into the chair that holds him into safe positioning.  Get the tray and put it on the wheelchair.  Make sure the back pack has his AFO's, immobilizers, and hand splints.  Brush his teeth carefully, wash his face, and then its off to the bus at 7:30am.  Bring Henry also to the bus.  Bus aide gives Henry treats, that's a thing we do.

After Daniel is safely ready and launched, its back into the house I go.  Clean up dishes in sink. Throw a load of stinky Daniel laundry into the washer.  Scoop the cat box and feed the cats too.  Go upstairs and shower, make sure I have something that looks half way decent to wear.  Hair gets blown out and styled sometimes. My face is lucky if I put on makeup.   Go through bills to make sure I didn't miss anything.  It happens.  Write down phone messages from yesterday with the intention of calling back later, but never get to it.

Usually I have to then drive to Newtown Middle School and drop off the Baritone Sax.  Get over to AllState in Monroe and do my best to work until approximately 3pm.  This is on a normal day.  If it were one of Daniel's MANY doctors visits or hospital clinics, I don't make it to work.  For the purposes of this blog post, I was able to work at AllState for several hours.

Leave Monroe at 3:00pm.  Get to Newtown Middle School to pick Thomas up after Jazz band ends.  Get Thomas home so that he can get started on homework.  Walk the dog.  Run a vaccuum to get up the cat hair.  Have a conversation with the nurse about how Daniel's day was.  Review his medications to make sure that something doesn't need to be reviewed.  Plan something, anything for dinner, and on a good day actually prepare it.  Or go with deli sandwiches, whatever.   More laundry.  Feed the kids.  Clean up. Do motherly housework until 5 ish.  Feed the cats, feed the dog, and take the dog for a walk.

Then somewhere about 6:30pm Daniel's night time regimen begins.  Lets assume I have no helper, because that happens.  So then I carry Daniel into the shower, and bath him (his lift motor is broken) and get him all clean and ready for bed.  Get the nighttime meds ready, breathing treament and vest treatment, and get the pump set for night feeding.  Daniel gets g tube fed around the clock at a slow rate.  Settle Daniel into bed.  Go into the kitchen and make formula, just like you did for babies.  Boil water, and mix the Neocate Jr. to make a supply for the next day.  Put on a favorite movie of his, or just something sensory like the lava lamp or the puppy that makes stars on the ceiling.

This is about the point in my day that I finally stop and sit down in the recliner in Daniel's room.  Maybe check out facebook, or cringe over my budget, or go onto you tube, or write, or just go through email.  Then at about 8:30pm Henry goes out for his last business before bed.  It's upstairs, put Henry in his crate.  Get the monitor on, and by my bedside.  Take my medication.  Snuggle into my bed.  Turn on the lap top, start writing but then experience the exhaustion swallow me up.  That's usually approximately 10pm.

When did I have 5 hours of leisure time in there?   I have an application that I have needed to get filled out and mailed.  I read an email asking me to fill it out and send it.  I had every intention under the moon to do that, but finding any time to work on this.  "Fill out that application and send it in."  I will.  I will figure out how to work it in.  At 4am when Daniel jolts me out of sleep, I'll try to do it then.

I often get to the end of my day and realize that, crap, I didn't fill out a form, call a medical supplier, schedule an appointment with a doctor, pay a bill.  And my feet hurt, and I'm tired.  I'm sleep deprived.  And the cycle begins again.  Sometimes with different places to be and things to get done, but never stopping or slowing down and never doing anything to bring personal pleasure to me.  Usually.

It's a whirl wind.  Much like when you have a newborn precious baby.  But bigger, much bigger diapers.

The application I have to fill out is going to have be on the tomorrow list.  If I can stay awake long enough to write one.

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.

Another drive to Staten Island

Any time I leave Daniel behind with a nurse I have a sick worrisome flurry of nerves in my gut.  But along with managing the life of my 16 year old fragile  child, I also have the responsibility of being Mom to my daughter. And my younger son. 

Funny thing this concept of driving somewhere alone with my husband John.  As 684 stretches out in front of us we sip coffee and discuss the changes to his company health plan. A bright morning sun warming my feet which are up on the dadhboard as if to say, ahhhh. Relax. 

Sarah has just finished her first year of college at Wagner College on Staten Island NYC. Out journey today is to get there, move most of her stuff out and take her out to lunch. She doesn't come home until Friday the 23rd.  

Wasn't it just yesterday we were shopping in Target for her first year siuoplies? Oh the pain and weeping I did when my daughter went to school and left home. Now in a blink she's coming back from college for the summer. Funny how that happens. 

With each exit sign that rolls past I think about Daniel and his recent episodes of oxygen saturation dropping into the 80s. He was in good spirits when I left, but it's a 2-3 hour drive to the Verrazano Bridge. 

There is no way for me to disconnect from  constant concern and worry. Even sipping coffee, chatting in welcoming adult conversation and enjoying a blue sky day I can not get Daniels face out of my mind.  And keep thinking "will he be ok with the nurse until 6:00 tonight.

In some ways we find a tiny bit of balance in our life that allows us to go and move our daughters dorm room stuff home.  In other ways we are parents who live with this undercurrent of fear and concern. 

I'm enjoying this coffee.  I'm trying not to text home until we get to the Hutchinson parkway. 

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. 

 

 

 

 

Julie and Wendy finally meet!!!! (+playlist)

Easter 2014 This is my story... (+playlist)

Physical therapy for Daniel and Thomas goes to the "moon"

Thomas Hasselberger is Daniel's bro.  He got to come along and try the zero gravity treadmill!!!!!

Daniel had pneumonia the week before this session took place, he was somewhat weak, and appeared to be having some pain.  This therapy is great for him, even though he has to work so hard to try and move his feet.  

Physical therapy at Summit Rehab is not covered by Daniel's insurance, but Adam Granger is so awesome.

I continue to try and find ways to make Daniel's quality of life greater. His legs really want to move, thats for sure.  Each day is a challenge.  I'm trying to work on my You Tube Channel, and share and connect with people.  Surviving this type of uphill battle is exhausting.  But I am the Mom here.  The Mom who loves her children more than anything else!!!

I want to get back to publishing more blogs as well.  Been busy trying to work at AllState a little bit.  Not nearly enough though.  But I try.

Have a wonderful day!!!   Please check out my channel and subscribe, I am currently up to 33 subscribers!!!  very small.  I need to grow.  

Love, Julie

Julies world from normal to mom on duty

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