Pictures and video of Nick during his time with Linda, including video from his last two birthday parties.

NICK

They said you wouldn’t live

You always proved them wrong

Whenever we thought it over

You’d rally, true and strong

The burden of a body

As broken as was yours

Was one that never broke your will

You always stayed your course

You battled so courageously

Through all your illness gave

You gave your all to live and love

So young and yet so brave

You touched so many lives

As you soldiered on each day

You taught us all a thing or two

So many lessons along the way

And through it all you managed

To always smile and have fun

Which often meant a trick or two

You sure knew how to make us run!

With a twinkle in your eye

And a mischievous little smile

You’d create a bit of mayhem

Your gears turning all the while

The passion with which you lived

The love you shared along the way

The strength you had to fight

And the will you had to stay

You lived your life on your own terms

You always gave your best

And when you felt your life complete

You decided it time to rest

No doctor told you it was your time

You chose the day and hour

As with your many miracles

With only God you shared that power

As we grieve the young man we’ve lost

We also celebrate that you’re free

From all the trials your life here had

Peace, love, and joy for eternity

Nick Adam Thompson 3/17/1992 - 9/19/2011

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.