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 25th
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……………
It's cold. The sun is gently shining and reflecting off some chunks of snow still left on the tree limb outside the window where I'm sitting. I have just pulled myself away from facebook. There are link after links of touching videos, articles, stories, and pictures of the lives so violently taken from our little town. Our collective focus is reaching out once again to unite us in thought and bring us together so that mentally we don't have to face our fears and grief by ourselves. There was a giant crack in the universe on December 14, 2012. Evil came in through the crack, smashing in the glass and destroying love. Little people, and loving adults taken in merely minutes and seconds. Leaving behind a feeling of hopeless helplessness. as we just pushed ourselves though day after day. The winter ended, the Spring came, the sun brought a beautiful spring and summer and hopelessness had transcended into helping hopefulness as the true human spirit emerged and our community embraced the concept of honoring those lost by being kind, choosing love, and paying it forward. 
For me, living here has been a road of ups and downs. Prior to 12/14 our neighbor tragically lost their son on 11/8/08, and grief was already living on Bennetts Bridge Road. Prior to that, about 28 years ago, my direct neighbor Betty lost her sweet 3 year old daughter Bridget, struck and killed by a car on Bennetts Bridge Road. Grief already lives here. And as a very active member of the Special Needs community and support groups, I can not even tell you how many children we have had to say goodbye to who have the same condition as Daniel, or who are sick with other conditions.
As a Mom, living here, in this house, struggling to stay on top of the needs of a very fragile son, I often wish that there was more I could do for others. I can hardly pay my mortgage, and Christmas is a time of stress and anxiety. But 900 birthday cards??? Obviously my son, without even trying, has brought something special to so many people. I can share his love, I can let people know how much the Special Needs community needs help. Many families are very proud, but they are struggling. And if people could just realize the magic, and life changing force that a child like Daniel and so many others have, they would be touched and changed forever.
