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Isabella Nicole Kurek
2009 & 2010
Our story left off in the spring
of 2009. Isabella’s battle would continue for another
year and a half. It would take me an additional six
months to find the peace and the perspective to write
this, the final chapter of Isabella’s Stor
Before writing each update of
the story, I begin by re-reading the portions I have
already written. Each time I can see how much has
changed in both Isabella’s condition and my own frame of
mind. As I read today, it is clear to me there is one
topic which lacks congruity. In the early pages of the
story, I refer to Isabella’s father as my husband, but
as the story progresses, he is mentioned less and less,
eventually as a vague “we,” and ultimately, simply as
“Isabella’s Father.” Later in the story, I begin to
once again refer to my husband, his family in Maine, and
our other children. The truth is that our marriage was
struggling shortly after Isabella’s birth and our
different opinions regarding her care served as a final
wedge between us. Like far too many couples dealing
with the death of a child, our differences would lead to
divorce. Halfway through the story I married my friend,
and long-time source support, Harlan. He brought to the
marriage his son and daughter, Reilly and Emma.
Together with my other daughter, Natalie, we have formed
a comfortable, blended family. I glossed over these
aspects of my life during the earlier portions of
Isabella’s Story because I felt they were irrelevant to
what I was hoping to accomplish. But I see now that it
may lead to some confusion and, more importantly, that
our new family had a huge, positive impact on Isabella’s
life. She loved playing with both of her sisters and
being read to by her older brother. Though my
relationship with Harlan has evolved over the years, he
has stood by me from the beginning and loved Isabella as
his own. She would happily confess she had two fathers,
Daddy and “Hala” and they both loved her very much.
We all enjoyed our trip to
Orlando in the spring of 2009. Isabella was, in fact,
able to travel with us to Maine once again that summer,
although her outdoor activities were diminishing. She
didn’t want to leave the house in the woods. Once we
tried to pack her up and take her out to dinner and she
put up such a fuss that we had to return to the house
early because she couldn’t keep her oxygen saturation up
and needed constant suctioning. It turns out that would
be her last vacation. During the summer of 2010, she
was too weak to make the annual trip to Maine as well as
the SMA picnic at Camp Harkness.
Isabella’s condition was quickly
declining throughout 2010. What was left of her
strength and mobility was deteriorating. The previously
described episodes of respiratory distress became an
almost daily occurrence. We worked closely with her
pulmonologist to increase her ventilator support, but we
could see we were fighting an uphill battle. Knowing
how much Isabella disliked being in the hospital, it was
at this time that we began to consider establishing a
DNR protocol. Being a minor, it was impossible to
create a legally recognized Do Not Resuscitate Order,
but with the support of our pulmonologist, we were able
to come close. We needed something to protect her
should she go into arrest if we weren’t home and she was
under the care of her nurse. With so many close calls,
we felt confidant there would eventually be an episode
of respiratory distress that would progress to full
arrest. We were terrified that if this happened while
under the care of a nurse, 911 would be called and
paramedics would break every bone in her chest trying to
do compressions and that she would end up in the
hospital on life support. With the threat of liability
and lawsuits, there was no way the nursing company would
allow their nurses to do anything BUT call 911. It was
expressly for this reason we needed some sort of DNR,
legally recognized or not. Our pulmonologist created a
protocol to follow in the case of an emergency,
describing our wishes. We sent a copy to the nursing
company, our pediatrician and posted a copy over her bed
at home. At that point, all we could hope for was that
those involved would respect our wishes. In the end, we
were glad we had it.
Around the same time we decided
to pursue a DNR, we also started to think about
contacting a funeral home. This was one of the hardest
things I have ever been faced with in my life. For some
reason, even thinking about funeral arrangements made me
feel like I was giving up on Isabella. Logically, we
knew there would come a time when it had to be done, but
it just felt so wrong. Before we could make formal
arrangements, we first had to reach some agreements as a
family. I had strong convictions about what I wanted
for Isabella and was afraid the extended family would
criticize me for my choices; however, I had no intention
of being influenced. Luckily there was very little
debate. I don’t think they agreed with my choices, but
they at least recognized and respected the fact that the
decisions lied solely in the hands of Isabella’s father
and me. Once her father and I were in agreement, it was
up to me to make the final arrangements. We chose Hoytt
Cognetta Funeral Home in Norwalk and my husband and I
spent an entire morning with their funeral director,
Danny. He was so patient, understanding and kind. We
told him our situation and what we wanted for Isabella
and he helped us accomplish it beautifully. I would
like to specifically thank Danny for all of his
support. He helped us to understand that by starting
this process early, we were in no way conceding defeat.
There are so many difficult decisions to be made. It
was hard enough at the time; I can’t even imagine how
much more difficult it would be to go through this
process in the days after a death. For as painful as it
was to walk through those doors and start the planning,
I know now that it was the right thing to do.
As Isabella became weaker and
more painful, her manual wheelchair was no longer able
to keep her comfortable. Most of her time outside of
her bed was spent in this wheelchair and we could see
she was outgrowing it. For a very long time it served
us well and we will forever be grateful to the school
system for allowing Isabella to use it; but it was time
to upgrade. We visited our old friends in the rehab
department of the CCMC in Hartford to evaluate Isabella
for a new chair. These were the same people who earlier
found a way to surprise us with her power wheelchair.
Once again, they worked so hard to find a perfect chair
for Isabella. She was fit for a brand new manual chair,
complete with a customized, foam-molded seat cushion.
Her scoliosis had become so severe that she needed a
seat cushion and back that would mold to her shape
perfectly. They pulled some strings and built her a
fantastic, customized chair. I will never forget the
smile on her face the moment she slipped into that chair
for the first time. She was so tired of test fittings
that she cried not to be moved again from her old chair,
but the tears disappeared and her face lit up in a
beautiful smile instantly when she felt the comfort of
the foam-molded seat. I only wish we would have done
this so much sooner. Sadly, we still had to secure
funding for the $8,000.00 chair before we could take it
home. Through combined donations from the supplier,
CCMC, and a local charity, the Molly Ann Tango Memorial
Foundation, we were able to bring it home within a few
weeks. We are so grateful to everyone who helped make
this chair possible for Isabella; it made the last three
weeks of her life infinitely more enjoyable and
comfortable.
My husband and I were able to
see Isabella was slowly becoming weaker and shared a
deep-seated feeling that time was growing short. Our
children knew SMA was a fatal disease and that Isabella
would eventually lose her battle, but they also
possessed the beautiful naivety and innocence of youth.
They continued to see her simply for what she was, their
little sister. They didn’t see the deterioration we
were forced to confront. We were so worried that if
Isabella passed suddenly, our other children would feel
shocked and unprepared, not understanding how things
could change so suddenly, when in reality, nothing about
her deterioration was sudden. For this reason, we
decided it was time to have a serious talk with the
kids. At the time, Reilly was 12, Natalie was 10 and
Emma was 8. Starting this discussion was like walking
into the funeral home all over again. It felt like we
were giving up, but even more difficult than that was
the feeling of shattering your children’s innocence by
tearing down the protective blinders they had built up.
We reminded them how sick their sister really was and
how close the end could be, how we were all doing the
best we could to help her, and how despite that, we
were going to lose her. We answered their questions as
best we could, but mostly we all just cried together.
Initially, we hoped this would be a conversation we
would be forced to revisit every six to twelve months,
but as it turned out, once was enough. We had this talk
less than a month before their sister passed, and I am
so thankful that we did. One of the things that still
hurts me the most, and probably always will, is how
difficult it was to share the news with her siblings on
the day of her death.
Isabella’s last social event
with family and friends was a “Purse Party” organized to
help raise the remaining money needed for her new
wheelchair. The party was a lot of fun and, more
importantly, provided many people (unknowingly) with a
final opportunity to visit with Isabella. In the days
leading up to the party, Isabella developed another
respiratory infection and became quite lethargic. There
were a few episodes of respiratory distress and loss of
consciousness. Once again, we tweaked her antibiotics
and her condition began to improve. By the day of the
party, she was feeling more like her old self and was
very excited to see everyone. She still tired very
easily and had to make an early exit, retiring to her
room to rest. The party was held Friday, October 8th.
Isabella seemed back to normal
on Saturday and Sunday following the party, but by
Monday night she was starting to feel poorly again. She
asked me to sleep with her that evening, which I did.
We snuggled and talked deep into the night; eventually
she fell asleep on my arm. It was a beautiful night,
bringing me back to the early days, when we spent every
night locked in each other’s arms. On Tuesday morning,
I left Isabella sleeping and went to work after her
nurse arrived. I received a call around noon. The
nurse was concerned because Isabella was still sleeping
and she wondered if she should wake her up. We decided
to let her sleep, knowing she was still fighting an
infection and could probably use the rest. Tuesday
evening I gave Isabella her bath and she quickly wanted
to go back to bed and nap. This was unusual, but once
again, we gave her the benefit of the doubt and let her
rest. She seemed very comfortable, but just looked so
exhausted. Little did I know I would be tucking her in
and kissing her goodnight for the last time.
Wednesday morning, October 13th,
2010, I awoke to the simultaneous beeping of my alarm
clock and Isabella’s pulse oximeter. As I got up to
check on her, I could see her ventilator and feeding
pump were still functioning normally. Without her
ventilator alarming, my first thought was that her pulse
oximeter sensor had become detached from her foot. She
was lying on her side, facing the wall, as she was
almost every morning. I shut off her alarm and moved to
roll her onto her back to begin suctioning. The first
thing I noticed was that her body was very relaxed and
there was no tension in her muscles. Usually in the
morning her joints and muscles are very stiff and it is
difficult to reposition her. The next thing I noticed
as I rolled her over was her pale complexion and just a
hint of purple across her lower lip. My heart
immediately hit the floor and I called for my husband.
We reached for the stethoscope kept next to her bed and
quickly realized she no longer had a heartbeat. At that
moment, time slowed down and everything that followed
seemed to be happening to someone else, almost as if we
were watching from the outside. None of it seemed
real. Could this really be happening? Right here?
Right now? She looked so peaceful and comfortable… like
a little angel… like she was just sleeping. I couldn’t
believe it was just last night that I had hugged and
kissed her goodnight, and this morning she was gone.
The immediate events of that
morning are too personal to detail, but suffice it to
say, we found a way to do what needed to be done.
Everyone we dealt with, from the paramedics, to the fire
department, the police department, and eventually the
funeral home, were all so compassionate and comforting.
One of the big uncertainties of that morning was whether
or not Isabella would be allowed to go directly to the
funeral home, as we hoped, or if the medical examiner
would insist on an autopsy. Partly because of our
existing DNR and the letters written by her
pulmonologist, the medical examiner agreed with us and
allowed her to be taken directly from her bedroom to the
funeral home.
Later that afternoon we went to
the funeral home to make our final arrangements. Having
already done most of the planning, we only had to deal
with a few details. I am so happy we planned ahead,
regardless of how difficult and painful the process,
because I can’t even imagine trying to make those
decisions on that Wednesday afternoon. That evening we
gathered the immediate family for dinner. There wasn’t
much talking, but we tried to answer the few questions
the kids had for us. Mostly we all just sat together in
disbelief.
Isabella was cremated a few days
later, in a small, private ceremony. We immediately
began preparing for a larger, more public memorial
service to be held the following month. Isabella’s
nurse and our family friend, Michelle, and my sister,
Anna, helped collect photos and prepared beautiful
displays and collages for the memorial. A wonderful
video montage was made for us by MJ Purk, a fellow SMA
patient with her own amazing story, whom we have known
since Isabella’s diagnosis. The memorial was intended
to serve more as a celebration of her life, rather than
a mourning of her death. Despite the tears, the many
smiles and happy stories shared over those few hours
suggest to me that we were successful.
We thought, at that point, our
battles with the insurance companies and home care
providers were finally over. They weren’t. Within days
of her passing, we were sued by Maxim Healthcare for the
nursing costs previously described. After years of
non-action, the timing was appalling. We were
ultimately able to compromise and settle the claim. To
this day, almost a year after her death, we still
receive random bills in the mail for everything from
laboratory tests to nursing fees. It seems there is no
end in sight.
For us, there will never be an
end to Isabella’s Story. She touched our lives and
shaped our perceptions of the world in so many ways.
She reminded us of what is important and what isn’t.
She taught us about beauty and love, as well as pain and
sorrow. She gave us all the opportunity to show our
true spirit, sometimes for the better, sometimes not.
We saw the amazing compassion and generosity of complete
strangers, as well as the fear, anger and insensitivity
of some of those closest to us. To some degree or
another, Isabella impacted the lives of everyone she
met. She was a daughter, sister, niece, cousin,
grand-daughter, friend and patient. We will all miss
her. She will forever be my baby-girl and will always
be with me.
During Isabella’s life and in
the months to follow, I have met many families living
with SMA. I know firsthand the emotional and financial
toll the disease imparts. I wrote Isabella’s Story in
hopes of sharing my own experiences so that they may
help other families dealing with the disease. As an
extension of this, I decided to create the Isabella
Nicole Kurek Memorial Foundation, a nonprofit
organization with a goal to provide support, care and
comfort to those families of children living with SMA.
We are dedicated to raising local awareness of the
disease by sharing our own experiences, while honoring
the life, love and memory of our daughter, Isabella.
The foundation can be contacted online at
www.isabellamemorialfoundation.org Please visit, if
you can. Isabella’s Story and photos can also be seen
on her personal website at
www.oursmaangels.com/isabella
Thank you so much for taking the
time to read our story. Life is short; remember to
cherish those closest to you and don’t hesitate to tell
them you love them.
Joanna & Harlan McLaughlin
9-5-2011
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