Today is April 11, 2013.  I'm exhausted. Daniel hasn't slept since yesterday. I sent him to school with the nurse anyways.  Taking a few minutes to lose myself in words is a very very powerful therapy.  I never know who actually finds it interesting but I do know that my therapist suggests writing.  

Anyhow, life right now is a twisted mess of college scholarship applications, performances, appointments, appeals, bills, home repairs, haircuts, and whatever else you can think of.  Most recently, Daniel received calls from his Endocrinologist at Yale who for some reasons wants to see him ASAP.  Perhaps he also saw that last round of suspicious blood work.  

I am digging deep for positive energy and faith.  Trying to do the best I can for Sarah who has been accepted to a long list of colleges.  This has been a BIG process.  Add in coordination of Daniel's issues, and Thomas's busy busy busy life.   Well, just wrap me up in a straight jacket, and call it a day.

I have to go now. And get ready to go out to run errands and DO STUFF for everyone else.  I am the expert at "DO STUFF FOR EVERYONE ELSE"  I don't mind really. I just wish it wasn't so stressful.

On a nice note, John bought a NutriBullet and I have been feeling better drinking these powerful shakes made of mostly vegetables.  Go me.

Here is something to share.  I found among my old documents one called "my book" that I had forgotten about completely. I am resuming this.  It's a story of the journey.  I would love to find someone to help me fine tune it, bring in more humor and actually finish it someday.  Right now? I'm too busy being inside the journey on the crazy train.

That's enough for today...  Here is the first few pages.  ha ha.  I really had no clue back in 1992.

Draft notes of the book I started writing years ago..

Life As I know it.  Told through Julie’s eyes.

It starts quite simply as the typical American dream.  I didn’t know if it would ever happen to me. I was an unusually lost soul for so long.  Always seemed to make it on a wing and a prayer..testing the waters, pushing the limit..getting by.  My parents never had much money, it always seemed like Dad was working his fingers into stained black exhausted hands (he was a pressman)..and we were always “just getting by”.  I started dreaming of writing, so long ago…  I just wanted to find a skill of my own…to be good at something.  I was really quite “ordinary” and this bugged me.  Somehow early on in my life, I felt like a lost soul…  just not a part of anything…  just… just.. Julie I guess.

From middle school to high school to college I tried to fit in, tried to figure out a path for myself.   I really honestly had no clue…but I was trying.  It was fun when I lost weight and began to feel beautiful, because I had self image problems obviously.  Bad habits came in the form of excessive shopping and compulsive eating… I really had an insecurity complex with the fact that I couldn’t figure out happiness.   I had some boyfriends that today make my skin crawl, and I wonder why I had no standards then…for myself or others.  Who knows.     But the best thing that ever happened to me was getting away from home, and into college.   Praise God I was able to go there and live, on campus.  It got me away from  the temptation of drugs and away from the dangerous boyfriend who was self destructing and trying to bring me with him.

Anyways, I met John in college.  He had been dating my roommate the semester prior, and we were in many of the same classes.  John was a sweet, simple kind of guy.  A jock so to speak, who was no longer a jock (he was cut from the ECSU baseball team the year prior) but he certainly wasn’t a wild partier like I was.   But I liked him, because he was warm and had a feeling of security in his eyes.  He turned out to be a little more complex than I thought, but we had fun…and we dated, broke up, dated, and graduated together in May of 1988.

College in the 80’s was interesting…and I internshipped at the state capitol, my final semester as a political science major.  I had to work for the head of the transportation committee…as her intern, and I really do not think she liked me very much.  She was not friendly, and I hated driving to the capitol everyday from school.  I should have valued the experience.  But Dad was letting me borrow his only car, a piece of crap Ford escort…with a crack in the engine block, 3 tires and a donut.  I only found out after graduation that he was without a vehicle and renting one for months just so that I could risk my life and get to that darn internship.

Funny… thinking back on that.   I can not understand why at the age of 18 I thought I wanted a career in politics, but the only motivation that I remember is knowing what a lobbyist is and how they lobby for something they believe in.  That was cool to me, I could do that.

But I graduated, John graduated.  We moved back home, him to Danbury, me to East Hartford.   And post graduate life began.  I got a temporary job for a while working at a company called Hartford Freezer, no lie, it was a trucking company and I filed invoices for this really scary mean woman.   I hated it…but it was down the street from home, and it was a change from all the years I had put in working for Shoprite.

I proceeded to move on to some other careers, assistant to the dean of admissions at the Hartford Graduate Center, that was fun.  I decided there to pursue my MBA and began to develop a love for Human Resources.  Which would eventually lead my career into HR Management.

John was home in Danbury, working for a company called US surgical. We both worked hard, became gym rats, and I even decided to become an aerobic instructor.   A huge feet of courage from the chubby girl who found herself beautiful after losing weight and exercising.   Exercise became almost like a drug for me during the years before the “ring”.   And I was thin and muscular and ready to take on the world.

Proposal came in the form of a lovely diamond ring presented to me on the island of St Lucia, July 25^th 1991.  I’ll never forget that trip… it was so perfect.. like a dream come come true.

We planned an October wedding for the following year, and on a pretty October evening started our new life together.

Our first home as a couple was a rented condominium in Middletown, it was pretty, a second story with vaulted ceilings that looked out over a running brook in the back.  We bought some nice furniture, and proceeded into our lives..  It seems so strangely normal now, when I look back at marriage in your early twenties.   Almost as if you are playing a game, shaking the dice, and moving to the next square.

I think our first adversity came in the form of John losing his job at US Surgical.  We were hit pretty hard by that, because it was supposed to be “part of the plan”.  And the square on this game board said… collect unemployment, do not pass Go, Go directly to the job postings.

So we scrambled, and as John tried to land a new job, I found a new job in Bridgeport, so far away from our picturesque condo complex with the brook, tennis courts, and pool… it was an entry level Human Resource position as a “personnel assistant”..  Ug.  In the West End of the dreaded Bridgeport, in a manufacturing plant no less.  A far cry from the corporate downtown office suites I had quickly become accustomed to.  But, it was more money, and a step towards my desire to work in Human Resources, so I accepted it.   Which was a good thing, since someone had to be employed.

Gosh it was hard to see John go through that lay off back in 1993, because he was slapped hard in the face.   Our parents do not teach us, that jobs these days can go as easily as they come…  what they teach us is.. “go to college, get a good job”.   John was, and sometimes still is, ill equipped to deal with the ego blowing concept of a pink slip.

Me.  Well, I started working at the Bridgeport company, it was called the Bodine Corporation, and they manufactured high speed automated assembly and test machinery…which was really quite fascinating compared to “insurance analyst” work.   We decided that we would move to Bridgeport, since I was traveling so far to work, and John was unemployed, there was more potential for him in that area as well.  And he found a job, also in Bridgeport.  TO this day, it was the job from HELL for him.  A German run company, he came in as their quality manager… and the first day he came home crying, literally, because he had to take such a big cut in pay, and he had in his hands blue prints written in German.  He was terrified.

Moved to a condo in Northern Bridgeport.  25G Janet Circle.  I’ll never forget it.  It was not even close to being as nice as our first homestead.  But Bridgeport is in Fairfield county, and its expensive.  But the nice part was, we were both very close to our jobs, I was literally 10 miles from work.. it was ok.   I began working out a gym in the mornings, where my old boss did….and started to develop some nice roots in the area.

A First Home

And when the game piece landed on “buy a house”..it was time.  And we started the dream of becoming perfect little home owners.  We started looking north of Bridgeport, in Newtown CT on recommendation of my boss, who lived there… and knew a realtor to help us.  Newtown, THEN, was reasonable, but had a lot to offer in terms of schools, community, and decent commute distance.  Well, we stretched our budgets..  and bought 2 Stuart Drive.  A nice little colonial, on a cul de sac…   

I can only explain to you my feelings about being a home owner as this.  Like a little girl, seeing a playground for the first time.  I had never lived in a house.  My parents had raised us in apartments, because they did not have it easy financially.  I was used to struggle to pay rent, run down apartments, and tiny yards that really are not your own.

Our house had a big front yard, not much for a back yard, but I was delighted.  The front yard lended itself to a grandiose sun garden, full of wild flowers on the side of a knoll…and I remember when we closed on the house, that I wanted to run barefoot on each square foot of everything..because it was so exciting.    Back then, it didn’t bother me that the gargages were underneath the house, and there were stairs to get in the front and back.   Who cares… it’s a great house!!!     I remember driving by the front lawn as I pulled up to the house, I had this urge to just run all over the lawn in my barefeet..  Oh My Gosh…  I..Julie… Julie Ann… was a home owner.  It was such a rush..  What a fabulous time…    OH by the way, we had about $2.50 in our checking account after the closing.  

But somehow I convinced John that we could do it.  And I will never forget that moment, flashing back, we were in the upstairs bathroom… it had a double vanity.. oh my!!... and he asked me “can we do this?”   I said yes. (like I really had a clue)  Yes. Yes. Yes.

The realtor was in the kitchen, we went downstairs and put our offer in. 

A New Baby

Yes… with the new house, came the desire to fill the house.  And it only required a month off of birth control before I easily became pregnant.  John had gone away on a trip to Germany, and we conceived right after he returned.  Just like that..one time.   I loved being pregnant, transitioning into maternity clothes, getting the attention, writing in my pregnancy journal, reading to my tummy, dreaming, designing a nursery, the baby shower at Vicki’s (sister in law), and just feeling so warm about this next step in our life.

When I went into labor, I remember thinking about the Lamaze classes, and preparing myself mentally.   About 20 hours into it the Lamaze classes were being called something with an F that rhymes with duck.  And it was a long, hard, grueling, terrible labor.   I remember eating a blue popsicle.  Then I remember throwing up blue popsicle.  Never, never, never eat blue popsicle when you are in labor.    The pain was excruciating, I thought I was dying… nothing could hurt so bad and not be death.    But when I pushed out the baby, and they said, it’s a girl!!  And I felt the pain disappearing like a quick but tormenting hurricane…the sun came out.  The warmth was there.  It was peaceful, and she had the biggest head of RED hair.   She reminded me of muppet, from the “muppet show”..   And we name her Sarah.  Born November 20, 1995.  I can not believe how an experience can start out so horrifically, only to end in the most incredible and glorious gift from God.     All I can say, is adversity breeds respect for miracles…  and that is truly what childbirth can be like.   

Sarah Rose Hasselberger, 9 pounds 13 ounces, and just as perfect as perfect could be.  She was the most adorable kid, like a little doll with porcelin skin and blue eyes..  she kept the red hair, which turned strawberry blonde, as it still is to this day.

So John and I brought home our first baby into our first house.  It felt so normal, because many of our friends, and even John’s brother, were all on the same path through life.  Jobs, houses, babies.   

Going Back to Work

And yes.  All good things have their break point.  Mine was leaving Sarah Rose in day care and going back to work all day in the manufacturing plant.   They didn’t have very much sympathy for being 5 minutes late because you needed to hug your baby just a little bit more.    I have never really talked about the emotional scars it caused having to put her in the arms of strangers.  I was mortified, and the first day I left her I had to stop and vomit on the side of the road.    Had I known what I would be feeling, then maybe a cheaper house would have been in order…but I was trying to be everything. 

I had completed my MBA the year before.  I had goals to be a director of HR.  That was the career plan.   After I had my baby…I held silent hatred for my career plan.  Inner resentment and frustration at the daily battle between paying the bills, and missing your baby do her milestones.    I would drive  75 miles an hour to Creative Development Day Care center…to wrap my arms around my precious child…and get her with me.   Where she belonged.   I recall one other working Mom, who nursed her baby in the parking lot every day until the child was about 2 years old…bonding..crying…clearly missing her closeness.    I have to say, with Sarah Rose..I was not good at nursing, it was too difficult for me because I didn’t know what I was doing.  

A New Career for Julie

Time eased the pains, and I found myself trying to get out of the job as Personnel Assistant and into my own management level job.  I had great experience under my belt, and a terrific mentor and friend in my boss.  So I was recruited to work for a company called ITW Highland… as the HR Manager.   They offered me 15,000 more a year, which was big increase for us.   So I left Bridgeport, and started working in Waterbury. 

I was excited, because it was a start up type of position.  They did not have a skilled HR professional there prior to me, and I had a blank canvas.  The people there were fabulous and down to earth… especially on the manufacturing floor.. those guys were as real as it gets.  I enjoyed hiring, doing benefits, training, and even traveling to our corporate office. I began to learn a lot about the ever stimulating world of “deep drawn metal stamping” …and gosh..  why didn’t I major in THAT when I was in college.  But it was the people that kept me grounded, my desire to make a difference in their lives.  I enjoyed stuff like the apprenticeship program, training and development, and sometimes even cost reduction strategies and workers compensation.  But it was pretty interesting.  I got great raises.    I missed Sarah, but she was happy at day care..   John bought me this picture in 1996…it has this on the bottom of a pretty picture of a little girl “a hundred years from now it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove…but the world may be different because I was important in the life of a child”   Those words then seemed really special, today..they are prophetic.

OH my goodness.  My life at ITW Highland…  and I have to write this carefully, but I had a boss when I was first hired, who accidentally called me “juicy” Hasselberger when introducing me.  I remember blushing, because honestly, those were the days when I was a pretty hot looking lady!!  I feel confident in saying that.    But along with “hot and juicy” was a very self confident person.  

I enjoyed HR in manufacturing, because I could make a difference in people lives.  It was a good job, and I was able to travel to Chicago periodically..  I liked having my little world there, and made some nice friends.

The world of a working Mom.. feeling pretty self centered because I was doing it ALL.  Having a great career, my little girl was in Day Care…the weekends were all about “us”..

Gosh, when you look back now..  There were just two parents and one child.  Two cars, two garages, two vanities in our bathroom.  Yippee.  We were just living a normal life.  And decided to build our family.

When the world that you know becomes the world that once was.  It is hard to take the reader to focal point of your mind.  Looking back before Daniel is like looking at someone else’s story.  The pictures of us, the smiles, the birthday parties, the easter egg hunts, taking walks…   there was a different careless sense of “this is a normal wonderful world”.   Good health, solid days and nights.   Lots of normal fights and ups and downs…but a surreal in a glass snow globe family.  One of millions.  Ordinary.  Happy.

Baby Makes Four…and opens another door

So.  My second pregnancy was two years from the first. I found out early this time that we were having a boy.  I was pretty stinking excited.  Of course I was. How perfect was this? 

As I write this down, I still recall the feeling I had when I found out.  John had to go away on business.. but I had to go to my ultra sound appointment.  I had the doctor write the sex of the baby on a piece of paper and put it into a sealed envelope.  That night, I had the envelope, I called John, and I had little Sarah (who wasn’t even two year) open up the envelope.  She was just learning her letters, so figured she could spell out for Daddy what it said.  OH course, instead of saying Boy or Girl, the piece of paper said “probably male”.   That was pretty funny, she was sounding out the letters…and I had to take it from her.

That piece of information starting a tsunami of thoughts in my head.  Like, what do you do with a boy.  But I was so happy, a son.  And John, went out to the Gap and bought an infant size little t shirt with baseballs and bats on it.  You didn’t have to ask what his dream was!    (that t shirt still sits, never worn, inside his top dresser).

Pregancy was normal.. I worked and worked happily through most of it.  I got pretty big by the end, and left work a couple of weeks early.  Thinking I would have to kick up my feet with a bag of snickers and a daily episode of “the baby story”…I was excited.

But, as we visited our friends (who were also all having November baby boys that year) my water decided to break in the lobby of Yale New Haven Hospital.   I will never forget the exact spot and how it felt..  because my water didn’t break with the other pregnancies.

It must have been incredible wishful thinking having just spent the evening in the maternity ward holding newborns next to my enormously huge tummy.  My baby was on his way too. 

I was pretty nervous, since my first was a grueling and long experience of hell.   We called the doctor, she told us to go home, get some sleep..  wait for contractions to start, but to definitely plan on coming into the hospital the next day around 1 or 2 in the afternoon unless contractions got worse.

We made arrangements for Sarah to stay at my in laws, and since they live near Danbury hospital, I spent the morning resting at their house until it was time to go.  I started to get really painful around noon time.. so I kissed my baby girl goodbye..  all full of emotion that the next time I saw her she would have a brother.  Leaving your first born, to go have your second born…is a powerful and emotional surge of motherly stuff.

Daniel.  I talk about his name a lot.  Because I believe that the Lord named Daniel.  I used to pray a lot on my drives back and forth to Highland …and one day, I had this voice in my head that just said to me.. Daniel. Daniel. Daniel.  Daniel is a perfect name. 

Until that day, that name had never entered our minds.  And it was a done deal…I said the name to John..and he was like… Oh My God yes.  That is perfect.

So anyways, I got to Danbury hospital.. and checked into round two of Julie’s Baby Story adventure.   Daniel was not like Sarah.  Daniel wanted to see me badly.  I was in labor from about 2pm until 4pm when they decided to induce alittle bit with drugs.  Dr says to me, we should have the baby by midnight.   But things progressed quickly, and without time for epidural Daniel was born around 6 pm.   It was fast.  I was so relieved…and Daniel was pink and so beautiful. 

We were now the proud owners of a boy.  And we went home to start our new life with our bigger family.  The American family dream.  One boy, one girl, great house, good jobs, things just starting out…

But underneath the perfect façade, John and I would fight a lot.  About the sutff that young couples fight about.  Money.  Porn. Money. And just fighting because he had a vicious temper, and I was an emotional rollercoaster.  One particularly bad fight in January, 1998, when Daniel was only 8 weeks old…let me to pack up the baby and Sarah go to the mall just to walk and think.  I was so upset. I had no one to call. I remember crying in the parking lot.  Then going inside.  But in the car on the way to the mall Daniel had been coughing, it was worsening since the day prior. A very bad cough.

So I went to the mall.  And walked.  Had coffee.  Then went to the lounge in Lord and Taylors to try to nurse him.  He had not been nursing well..  and at the mall he refused to suck.  Something was wrong.  Here I was at the mall, selfishly thinking of myself and my anger towards John (he had smashed up some old furniture that was pretty nice)..  but I had to get home.   And I realized driving home that the cough was not normal.

RSV Sunday.  The reason why the SuperBowl will never be the same for us.

That day, after leaving the mall with my sick infant and two year old daughter. I realized I needed to get in to see the doctor.  Nothing else could matter.   I called him, and they were still at the office that Saturday and could see us.  Suddenly, I remember that I got firm with my cranky pouting husband and said “you need to come with me, the baby is sick”.

Dr Isgut took one look at him, and listened to him…and said “You need to take him to Danbury hospital right away for an RSV test.  Go now.”   And we were like.. huh? Hospital?  Never had been to the hospital with Sarah. 

RSV. Respiratory Syncitial Virus.  He tested positive.  They were giving him breathing treatments, and wanted him overnight for observation.  That night into the next day I had my first sick overnight hospital stay, on a cot, in a little room.  I kept trying to nurse him, but it was not easy for him.

The next day, we were discharged with a nebulizer…sent home to care for our coughing tiny infant.  I was scared…he was so little..  but we followed the directions.

As the evening settled in, we put Sarah to bed…and snuggled with our baby into our bed to watch him.  His breathing was labored. His tiny chest retracting in and out like a pump was pulling air in and out…and his nostrils were flaring.   I began monitoring his respiration rate, which I learned from my “what to expect book” 

But I couldn’t stand it.  I called the hospital, got the pulmonologist on the line…and told him that I knew it was very late..but Daniel looks bad.  He said only a few words, “bring him back in, meet me on 11 as soon as possible”.

Somewhere around 3am we got to the hospital after having John’s folks come and stay with Sarah.   As we rode the tower elevator up to the pediatric level 11…we were scared…Daniel was looking even worse.  The door opened, and there was good old Dr. Dworkin at 3 in the morning in his famous white fisherman’s sweater… I will never forget certain things.  One of them is Dr. Dworkin and the big heavy sweaters he always seemed to have on.

The ran an iv line in Daniel, and started fluids.  The put us back in a little room on the pediatric floor..  but Daniel was just not able to nurse at all.  His retractions were worse and his cough was defeaning.  There were the sounds of other babies coughing in the distance, and we had to be in a quarantined area.

Respiratory arrest brings a helicopter.

8 am.  In my arms.  Daniel stopped breathing.  His sweet little face… one second snuffling, and flaring…the next.. soft…gray..and eyes were big and wide.  He was staring right through my soul. He was dying…I could see it.  I could feel it on every level of mother hood…  and then the alarms were going off everywhere.  I mean.. it was a nightmare…  

John was standing in the doorway with two big cups of coffee he had just brought up for us.   And I was moved…almost shoved into the hallway…terrified and traumatized…while they all frantically resuscitated and brought air back into my baby. 

We were in shock, I just sat against the wall in the hallway..  I was in a daze when they brought me and John into a room to sign papers, and in a daze when I kissed my baby goodbye.. and in a daze when we watched Lifestar lift from the helipad in the parkinglot…bringing our Daniel off to a hospital in New York…  which we had to drive to..   I will never forget how hard I cried.  I cried so hard the very essence of my human soul wept until it hurt.   We were so frightened. We did not know if he would even be alive when we got to Westchester.  They were not that optimistic.

When we arrived in New York, and got to the Childrens Medical Center there.. it was the old hospital, and something out of a 1950s psycho ward. That’s what it felt like to me.

We waited in the “parent lounge” for an eternity.  Waiting to be able to see him.   When we finally did.  He was in the PICU…with 13 or so lines coming out of him, on a respirator,  frail, and in a coma.   How do you maintain your composure then? 

I was so completely void of emotions, from sheer exhaustion over the past couple of days.   That hospital did not have, at the time, accommodations for us to stay over…so we had to go back to Newtown.   That was so hard…leaving him there.  And I wanted to call every second to see how he was doing…  they did give him a blood transfusion during the night..  and getting that phone call was a freaking nightmare because every phone call meant either good news or bad news.

It was two weeks of back and forth to that cruddy hospital.. the doctors there were excellent… it’s the facility that was run down, over crowded, and made me feel like I was in an insane asylum.  Pumping breast milk on a pump that they shared on the floor…pumping and pumping and pumping because I needed to do something to stay connected to him.

He did finally come out the hospital, and recovery went well for him.  A few little hiccups with respiratory problems…but he certainly never lost his sweet smile…and we thought that perhaps life would rebalance itself for us.    I felt like I had survived a plane crash after RSV.  What we had seen and been through was incredible.

                       

Something was wrong

As Daniel joined the ranks of daycare babies, where Sarah was also at Daycare, it became clear pretty quickly that he was delayed.  His motor skills were delayed.  He was not able to hold his head up at 4 and 5 months old, and was not holding a toy.  I had to keep going to work, so I had to leave him in care of day care.  They did a great job with him..but the other babies were crawling circles around him, and he was still just sitting in a baby seat looking around.

We started early intervention with Birth to three about 6 months old.  We also started seeing a developmental specialist who thought that perhaps the respiratory arrest may have set him back somehow. 

Around 12 months old, we had him in patient at Yale New Haven Hospital for pneumonia.. and it was the first time a complete MRI was taken and we met a pediatric neurologist for the first time.  She was a nice lady…  But the MRI revealed a truth that would shatter our world and our dreams of the perfect life for our little boy.  He had brain that was not shaped correctly…  she called it Pachygyria, which would later be changed to Polymicrogyria.. but essentially..his brain was malformed…and too small.  And that would have had to have happened in utero.  This meant that he was having problems from birth, and we just didn’t know it until later motor skills were not coming along.

A New Journey into the Unknown

We knew we had a child who was delayed.  But now we had the truth, we had a child with a malformed brain who would never be able to live a normal life.

I guess the pain was greater than I can describe.  We loved this little boy so much, he was an incredible little soldier having been through so much.  And to know that he would be facing a life of disability, to what degree only life would reveal…was the biggest test of faith either John or I had been faced with.  We were in our thirties.  Life was supposed to be cheerful, wonderful, you know..young parents at the park pushing swings and throwing baseballs on the weekends.

Well..  I look back often and realize that from that RSV at 8 weeks old, the concept of being a “normal mother” dissipated like a puddle in the hot desert.  And we now were figuring out an entirely new life that what was in the “plan”.  OH, by the way, having a “plan” is big lie.  Just thought I’d let you know.  There is no way a plan can ever be real.

Daniel had been, despite his troubles, a chubby sweet little guy.. and was able to return to day care after getting well.  The problem was he started to get thin, and was not gaining weight.  Eating was difficult for him, and he had to be fed only pureed foods.  He was receiving therapy at day care, and that was helpful.  We started seeing a Gastroenterologist somewhere in the 18 month age.  He told us that Daniel had reflux pretty badly, and started him on some medication for that.  He also performed a PH probe study, overnight at the hospital.. to see what was happening with the acid.

At age 2, the GI doctor recommended a gastrostomy tube be placed into Daniel’s stomach to enhance our ability to feed him.  He was diagnosed “failure to thrive” and to us, although it seemed difficult, it was a decision easily made.   The “G tube” as they call it, is really just a little hole into his stomach whereby we can pump in formula…and he doesn’t have to deal with choking or swallowing.  He did start gaining some weight again…but from the age of 2 years old he became on a growth curve that fell below the normal.    Thankfully though, medicines could all be given through the g tube…and that was a relieve.  It also helped prevent dehydration risks.   He never seemed to mind the tube, and dealt with it…like he deals with everything.  Smiling and cooperative.

Adapting to the world of Special Needs, 3 years old and here comes school

                                                                                             

Early on, it wasn’t really too difficult because Daniel was infant like and all of his therapy came to his private day care or to our home.  In the state of Connecticut, the birth to 3 system provides early intervention for babies and children up to the age of 3.  Then, they transition into the school systems special needs program within your town.  At the age of three we had to lose all of his therapists, and supposedly bring him to a preschool in Newtown that had other special needs children.    I was pretty freaked out, because I knew Daniel…  I knew that he was so medically fragile from a respiratory standpoint.  He was so special, and so fragile in my eyes that putting him into school seemed completely ridiculous.  But what choice did we have?

The one strength I had was not settling.  I had heard about a little private school program in Danbury (20 minutes away) called Project Succeed.  It was a medical model program, with only 5 or 6 disabled children, their own therapists on staff, a nurse, and special education teachers and aides.   I started the exploration process…and really felt that Daniel was far better suited, and safe, in that environment.

Our school system insisted that their “special needs preschool” could provide for Daniel’s needs.  And the world of the “I E P” unfolded.   Ha ha ha.  Are you kidding????

Daniel’s Education

We expressed our desire to send Daniel to Project Succeed.  The school administrators in Newtown asked us to visit the preschool, called Probe, first. So we did.  There were about 30 kids in the room..  some disabled, some normal peers.  The disabilities varied, from autism to downs syndrome, to other things I didn’t recognize.  There was one child severely involved like Daniel…she was being cuddled in a rocking chair.  Everything was out in the open.   It was damp and chilly in there.   

I asked, “Where would he be getting his g tube feedings” and they told me down in the nurses office.   AND, by the way, Probe shared a nurse with the rest of the elementary school.  I wanted to see and meet this nurse, so I walked with the board of education representative to the nurses office, we went in.   They were doing head lice checks.  HEAD LICE CHECKS???   You have to be kidding me.  

Oh don’t worry, they will put him behind a sheet.   Well, I looked at the representative and told her on the spot.  This does not work for Daniel.  I want him to go to project succeed.

John and I went home and called for an advocate, got the name of a lawyer, and went into Daniel’s placement PPT meeting with our guns loaded with doctors notes, prescriptions for medical care and therapy, and all of the reasons why a medical model is better for our son.

And they agreed.  We were so excited that we through a little party to celebrate that Daniel was going to Project Succeed!!

He turned three in November of 1999 and started at Project Succeed shortly after.  He is still there to this day.

Adding to the family again

Sarah Rose was such a joyful little girl, she was like my anchor that kept me a part of the normal world.  Her wit, her playful smile, her love and snuggles for her little brother… it was really sweet.

In the summer of 2000 we went on our normal family week to Hampton Beach, and started talking about another baby.  Well, I had been seeing a shrink you see…for post traumatic stress and depression related to all of this.  And one of the things he said for us, was that we were still young, and another child may just bring some strength and unity and healing into our life.   We were like YEA RIGHT!!!

But surely, God had a plan for that.   And in August of that summer, I became pregnant with a third child.   It kind of happened quickly, as they all did for me.  And before I realized it, I was freaking out in fear.  We were not sure of the genetic connection (or not) with Daniel’s disability.    What if it happened again.   And OH MY GOD, what is my job going to say when I tell that I have another baby on the way.  They were not supportive when I had Daniel…now this.

Thomas

Thomas was born on February 25, 2001…  a beautiful  and very big baby.  Born by C section at Danbury hospital..he was over 11 pounds at birth.  As I held this amazing baby in my arms I felt as if a circle of love was completed around Daniel…and our family.  Thomas was simply gorgeous…and plump…and sweet with a tuft of black hair and that sweet round angel face.  Just amazing.

So now we had a third child.  And yes, life became busy…  but it was wonderful and bitter sweet to watch Thomas experience the normal motor skill development that Daniel never had.

Life would change again..as we realized our house was not going to work for a child in a wheel chair. (it had a two under garage, with stairs up from the downstairs, stairs up from the front, and stairs up from the back…and sat on a hill.)   And for me to have to carry a 12 pound infant up and down stairs.  So..we found a new house…about two miles from the old one…. and we brought in a nanny to help us.  I still had to go back to work, and Day care for three was out of the question expensive.  We had room in the new house to have a live in, so we hired a nanny through a Mormon Nanny agency.  Her name was Maria..and she would stay with us for about a year and a half.

We moved into the new house on Bennetts Bridge Road, Sandy Hook CT in August of 2001.   One month later the towers fell.

To be continued……………