My son, Nick, was born on St. Patrick’s Day, 1992. He was born premature and was diagnosed soon
after birth with a rare genetic disorder along with a mind numbing list of
medical problems. The doctors all said
to take things hour-by-hour with Nick, instead of day-by-day. Nick remained in the NICU of the best children’s
hospital in the state for a year and a half before coming home for the first
time. All Nick knew those early times
were needles and tubes, poking and prodding, and the sterile environment of an
Intensive Care Unit. Watching my son suffer while he struggled to live cannot
be described. There have been many, many occasions when I thought I was going
to lose him but none more frequent than his first year.
I learned early on that
Nick was a fighter. He had a stubborn
streak a mile long, a will that was unbending, and a thirst for life of heroic
proportion. Along with Nick’s will to live, he had a lot of help in terms of
love and prayers. There is even a “medical
miracle” fully documented in Nick’s medical records when his heart grew over a
weekend. There’s another where he was
saved by a kiss. Nick needed all the
help he could get, because his prognosis was grim. The geneticists set his life expectancy at 3
years of age. He came home with around-the-clock
nursing care, a ventilator, a feeding tube, enough medications to fill a small
pharmacy, and one very happy mommy.
By the time he reached 5 years of age, Nick had outlived all
life expectancy predictions, was the topic of multiple medical journal
articles, and was the only diagnosed living male case over the age of 3 with
his syndrome. It was clear to all of us
that Nick was making up his own rules.
Despite the frequent hospitalizations, surgeries, procedures, pain, and
illness, Nick continued his passion for life. I think he had something close to
24 brain surgeries during his life, along with open heart surgery, and many,
many other painful, really horrible procedures and medical problems.
Living
with Nick and caring for Nick was the most challenging, and rewarding,
experience of my life. Although Nick was
never able to give as much as he took (his level of care was so extreme that was simply impossible), and Nick often struggled with expressing himself,
the rewards I received came in the lessons I continually learned from my
son. I am the person I am today, because
of my son and those lessons. I am
stronger and more confident, more organized and able to prioritize
appropriately, more effective in crisis and compassionate toward the trials of
others, less easily distracted by the noise of life, more appreciative of the simple
things, less easily intimidated by so-called experts, and better able to focus
on what matters. Nick gave me those
things and so much more.
There will never be a reason that makes sense in my head for
why my son was born with all the illness his life had and all the trials he
had to endure. But I do know that I am
extremely proud of the way he lived his life.
He had an inner strength that left me in awe. He fought for every day with determination
and courage. He never waivered. He always knew what he wanted. As complicated as his world was, he had his
priorities and desires, and he never gave up on them, not ever. His world was one of doctors, surgeons,
nurses, therapists, teachers, social workers, respite workers, hospitals,
doctor’s offices, therapy centers, pharmacies, medical labs, surgeries, tests,
procedures, medications, therapies, monitoring, and routine. And yet through it all, he never forgot to
have fun. Nick loved to stir things up. If
there was mischief to be made, Nick was most often the instigator. His mind always on full alert for a nurses turned
back, and an accessible tube or wire. With
a flick of his wrist, he was dangling the pulled out tube or wire from his fully
extended hand, a huge smile on his face, often alarms blaring as a result, and
a care giver scrambling to put whatever he pulled out back in. He found great
joy in making us run!
With as limited as his world was (he could not walk or talk,
he ate through a tube and breathed through a tube, he was diapered and depended
on others for all daily cares), Nick maintained full control of his
environment. He was never one to be
pushed around by a bossy nurse, or an over-zealous therapist. He never allowed others to impose their will on
him. I’ve seen him put a bossy therapist in tears. She never stood a chance at making Nick do
what she wanted. She didn’t understand
that you had to make Nick WANT to do it, or it simply wasn’t going to happen.
If you pushed him, he was capable of going inside his shell to not be seen from
again until he was ready to reappear. He
was a survivor. He had to be. I couldn’t protect him from his world. Those life saving procedures were horrific
but necessary. Not everyone that cared
for Nick was in the business for the right reasons. Nick couldn’t tell us when he was treated
poorly. Those of us who cared kept an
ever vigilant watch to keep him safe from abuse. But Nick made sure we all knew who he liked
and who he didn’t like. He was not
beyond taking a person he disliked, turning them toward the door and giving
them a little push. At those times, you
didn’t need words to get his message loud and clear.
As tough as Nick was with all his battle scars from surgery
after surgery, Nick still had a soft and loving interior. After my divorce, when I went through such a
deep depression, in the morning after the night nurse left, I would often crawl
into bed with Nick and hold him and cry.
He would look me directly in the eyes, kiss my hand, and then hold me
and pat my back. I needed him and he was
there for me. I don’t know what I would
have done without him.
After a prolonged illness and nearly 7 months in the
hospital, after I’d lost all but 2 of the 18 nursing homecare professionals
staffed in my home to care for Nick, I had to find a care facility outside the home
for him. I was devastated. I had promised Nick I would keep him safe
after getting him out of an abusive environment many years earlier. How could I protect him when he wasn’t in my
home? I couldn’t and that scared me, but
I simply didn’t have a choice without nurses to care for him in my home. So I prayed for a solution. And within the year, a nurse appeared on the
scene, Linda, who announced she wanted to care for Nick in her home along with
her two special needs daughters. After a
lot of red tape, Nick finally moved to Linda’s home. Nurses that worked in my home now worked in
hers. They told me how wonderful it was there. Once Nick settled in, he flourished. Not only did he have a wonderful, stable,
medically capable environment, but he had peers, with needs like his, and group
activities and outings, and school. He
was coming into his own, a man, with his own life and friends. It was more than
I’d asked for. It was more than I’d ever
dreamed for him. We were so
blessed.
I cannot tell you how many times Nick appeared to be “on his
deathbed.” Basically his entire first
year of life, after a bout of sepsis, after his open-heart surgery for
subaortic stenosis, after the massive stroke of his left frontal lobe, after the strep and staff infection in his cerebral fluid from an
infected VP shunt, after each round with RSV, after his ill-advised
decannulation with a restricted upper airway, after a botched bronchoscopy and
emergency tracheotomy, after endocarditis of a cardiac valve with an estimated
3% cure rate, after each respiratory illness with pseudomonas or some other
nasty bacteria or virus, after his infected gallbladder and perforated GI tract,
and so many others. The most memorable
of all of these for me was many years ago, when Nick had a respiratory
infection that had him so tachycardic that his heart could not sustain such a
fast rate for much longer. His doctor
called me and told me that Nick was going to die, and that I should drop
everything and come to the hospital. As
I rocketed 90mph down the highway between Madison and Milwaukee like a race car
driver, she called me en route and asked me if they should resuscitate Nick if
he coded before I got there. The doctor
was clearly struggling not to cry on the phone as she asked me. Nick had a DNR order for cardiac intervention.
I swallowed hard and told her , “No, if
he goes, let him go.” Then I pushed the pedal to the floor. When I got to the hospital, I ran through the
hospital, staff yelling at me that I didn’t stop for a clearance badge, but I
ignored them. When I reached the ICU, it
was like a scene from a movie. Nick was apparently
in a corner unit of a line of glass walled little rooms. The room was filled with men and women in
white coats with stethoscopes around their necks and grave faces. As I got nearer, they parted, and I saw the sterile
yellow paper gown clad nurses with their isolation masks and gloves. They parted and I saw Nick. He was laid on his back, his arms stretched
out to his sides like a crucifix with IVs in both, his chest literally vibrating
from the speed of his heart. Some of the
eyes above the nurse’s masks had tears welled up in them. The nurse next to me, Carole, told me it was
okay to kiss him and she held me firmly around the waist. I think she was worried I was going to faint. I leaned over him, laid my hand on the top of
his head stroking his hair, and whispered in his ear, “I’m here Nick. It’s okay.
You can go. I love you.” Then I kissed his sweet sweaty cheek. As I stood back up, I heard all kinds of
murmuring from the medical staff around me.
And then I became aware of the change in the beeping of his heart
monitor. That super fast beep, beep, beep, was slowing very quickly back into a
normal pattern. I looked around
confused. A nurse at the foot of his bed
looked at me in wonderment and smiled.
She said, “Sometimes what modern medicine can’t do, a mother’s kiss can.” The doctors and nurses began to trickle out
of his room, the crisis averted. My partner, Jason, was no where to be found
for some time afterward. When I finally
saw him, I asked him where he’d gone. He
told me he had to go find a vacant room because he had lost it and didn’t want
others to see him crying. He then
described how Nick’s heart had responded as soon as I’d kissed his cheek. Jason
looked at me and said, “I saw my first miracle today.”
That’s pretty much how life was with Nick: crisis, drama,
sleepless nights, stress, worry, and a lot of hard work. But it was also: love, strength, perseverance,
hope, faith, joy, happiness, passion, and fulfillment.
As you may have guessed from my use of the past tense, Nick,
at the age of 19, passed away Monday night, September 19, 2011 around 9pm at
home with Linda’s arms around him. He’d struggled
with more acute heart problems this year after his gall bladder infection. Heart problems that couldn’t be fixed. Nick’s DNR order for cardiac intervention
remained in place. They were doing all
that they could do for him. His heart
just couldn’t keep up any longer. As Linda
held and kissed him and told him how much we all loved him, he didn’t panic but
remained calm. Like me, all those years
ago, she told him it was okay to go.
Then he took two deep breaths and passed.
I am grateful that Nick passed peacefully and with dignity,
in his home, in the arms of someone he loved. I always worried he’d die in an ER or OR with
white coats surrounding him, essentially strangers poking and prodding. I’m
glad he went on his own, when he chose, at home where he was loved. Actually, I guess I shouldn’t have expected
anything less from Nick. That’s how he
lived his life, on his terms, why would his passing be any different.
***
Nick, I love you. It
was an honor to be your mom. You grew into
a fine young man. You exceeded everyone’s
expectations. I could not be more proud of the way you lived your life. You faced the challenge and adversity of your
life with strength, courage and a smile.
You loved with everything you had. You stayed true and willful to the very end.
You taught us much about living life, appreciating every gift we’re given, and never
ever giving up. You also reminded us to
laugh and to buck authority once in awhile.
Thank you for sharing your amazing life with me, with all of us. You will forever have a special place in all
our hearts. For me there is also an
empty spot now that nothing will ever fill.
As much as it hurts to know I won’t be able to see your smiling face
again, your kiss on the back of my hand, or your beautiful brown eyes as you
sign “I love you”, I am also so happy for you. Your spirit is free and you’re without
pain. I imagine you’ve met your Aunt Tricia by now. Tricia is much like you: mischievous and fun
loving. I’m sure you've already fallen
head over heals for her. She’s as irresistible
as you! Tricia, keep an eye on him and
don’t let him get into too much
trouble. I love you both and miss you
more than words can express. See you on
the other side. Love always.
