Fixated in Wonder...

I remember rocking Patrick in the hospital nursery.   He was alert with dark eyes fixated on mine - maintaining eye contact with me for what seemed like hours....  I'm convinced he was thinking - checking out this new world that he was now tethered  to.  The beeping monitors and sighs of the oxygen pumps were to be expected...however I was caught off guard as he reminded me more of a character in a circus act- as he sported a medicine cup taped upside-down on his head protecting the vulnerable IV entry point.

Somewhere there was an agreement for surgery.  Yes - a blockage in his penis - the pressure stressing his malfunctioning kidneys.  Sure... a vesicostomy makes sense - an opening the size of a button below his umbilical scab.  A small incision in the bladder - through the abdomen - the bladder would drain into his diaper.  It all makes sense - did I need to sign anything? This was expected - he will be fine.  It won't take an hour - you can wait out here...those are the doors to Recovery...

I would have the art of 'waiting' for Patrick down almost immediately.  This earliest procedure would take him from me but most of Patrick's pokes and prods were executed in my arms or lap.The  surgery was a snap mom - he sailed through it...you can go see him through those double doors.  He's in the warming blankets but you can pick him up - it's ok - he won't break...

 Just like new mothers learning the nuances of their normal and healthy babies - I would be embracing my normal with Patrick.  I found pride in charting input/output and would encourage accuracy in measurement and recording.  We celebrated how well Patrick healed and how strong he was.   Diapers needed to have a high-lip in the front to ensure covering his vesicostomy and keeping him dry.  His sagging skin on his stomach where muscles should pull it taught was a reminder for core exercises and support while learning to sit.  There was no baby manual that guided me through the process - but instinctively I followed his lead and discovered what being Patrick's mom  required.

It is funny how a baby is just a baby.  I never longed for the babies in the nursery down the hall or never wished that my baby was different.  Patrick was Patrick from the day he was conceived and no one else.  He would never be a day without oral medications and could ingest several at a time.  His neighbors in the neonatal unit would all be navigating their own journeys - with their own tragedies and triumphs.  But they became acquaintances - Brad sharing the same semi-private room with Patrick while the three girls - in the next area just beyond the alley kitchen - bellowed almost on cue from morning til night.  Mom's joked together and shared recently purchased outfits while dads protectively hovered and monitored their families.

I would bring him home to a small duplex.  It would be in those first hours that my reality would be revealed. Wrapping Megan tightly in the blanket cocoon she had gotten accustomed to sleeping in - I gave her musical mobile one more crank as she nestled down to sleep.  Walking from her newly decorated bedroom across the hall to Patrick's nursery I was overwhelmed by the complexity.  Where there would be knick-knacks for Megan were cases of medication vials for Patrick.  A timer would be set each night to ensure the integrity of his maintenance medications.  His blankets would be looser to allow and promote movement to strengthen his neck and limbs.  '

The instantaneous rush of adrenaline receded as quickly as it had flooded my world.  I settled in to Megan and Patrick's differences as simply as if they were only that of hair color or disposition.  Megan had her own feeding schedule - preferring finger foods with texture and flavor over the blandness of todler food.  Patrick would like his bottles on the warm side and would curl his lips up into a smile - with the nipple still in his mouth - to playfully signal he was done.  I longed for them both to sleep simultaneously so that I could collapse into the sofa or chair.

And so it went... Our world would always be filled with the sounds of pumps and monitors.  There would always be alarms for medications and appts. scheduled on the calendar.  But there would also be jobs and careers, first words and first steps, babysitters for date nights and laundry piles that littered the basement floor... and would find I was the one that would be fixated in wonder - checking out this new world I was tethered to... 

No more remarkable than others...

Having adult children is awesome.  As a matter of fact I think I prefer it to the days of chaos and fleeting moments of their younger years.  As we celebrated their dad's birthday in our Longmont Town home recently, I couldn't help taking it all in.  They are big - 'Little Dean' now north of six feet tall...with McKenzie not far behind.  Megan is next and then me -  looking somewhat dwarfed as I stand next to them collectively.  They  may have grown in stature but still maintain the characteristics of their youth.  I can still picture them as they would come and go from school to activity... although it now seems like a series of pages in a flip-book.  You know the kind I am talking about...where each page has an individual picture but if you flip it quickly with your thumb - you see a series of events unfold.  Thus is my memory of their childhood - a series of events that I can flip through in seconds ...but still with the ability to stop on each page to gaze at a single still.

Patrick is oddly missing from the celebration.  Four is now three...and I briefly wondered with my husband what Patrick would be like at 28.  He has been gone now 18 years-almost twice as long as he was here with us.  Seems like yesterday - recent history in our flip book.

I contemplated this post as I was walking our dog.  I had started this journey to share Patrick's story but have seemed to get oddly distracted - bouncing from past to present.  What is comforting is that I seem to have taken Patrick with me - far beyond the day of his accident and the day we chose to let him drift off.  He is with us as part of our family...he lives through the Memory Pillow his sister made so many years ago and still displays in her Denver loft, through the tattoo of cross and sash on his little brother's shoulder and through the memories in the mind of his baby sister that no doubt were 'pieced together' as we shared his life with her.  For me - I smile as I see the watch that he wore every day in 4th grade slipped loosely on his Teddy Bear next to my bed.  Patrick's story continues to unfold but it is intertwined with those of his brother and sisters. The events of his life are memorable but nothing more outstanding than theirs.  

Megan arrived only ten months before Patrick...with a story of her own.  A brand new mom with a brand new baby I experienced the power of projectile vomiting and the toll that it takes on a new life barely six pounds.  Her story unfolded in the emergency room - with 'cut-downs' in her ankles for IVs and imminent surgery for Pyloric Stenosis.  I remember rocking her in the recovery room thinking about how quickly it had all happened.

Patrick was next - with a series of procedures for the two of us long before we would actually meet face to face.  The early sonograms were plentiful but not invasive and seemed like merely a picture story of his progress.  The fear of the initial amniocentesis was calmed with successive procedures at the hands of a very skilled and compassionate neonatal specialist.  And ultimately as the surgeon operated on Patrick's bladder during my last month of pregnancy, it seemed almost normal in this series of events.

Little Dean would be next.  His uneventful pregnancy passed quickly as I carried mail on my postal route.  His due date in late July, I decided to go on leave before the July 4th weekend.  Camping with my brother and his family over the holiday I was round and ready - with movies of me on the beach to document my delivery-ready status.  Later that week Dean II would be born as I slept through my Cesarean.  I would wake to find that he had been air lifted to the Medical Center in Syracuse 90 miles away.  He had aspirated blood into his lungs during my section- requiring intensive care for several days.

McKenzie's story would be more the norm - although she would always be incensed that her appearance was less eventful and would come with less attention.   I remember being in awe of it all...appreciating her health and being thankful for the simplicity of a 'normal' birth. 


Hindsight not only contains the wisdom of what we might have done differently -but also enables us to look at the bigger picture.  I wonder how I made it through it all. I understand now why I avoid those that claim they can predict my future - I want to live it a day at a time through faith...for the events of life's journey in totality come with the amazing highs but also the circumstances that could be overwhelming.  I wouldn't trade any of it - not one single day - as each experience is  a 'knick-knack' in my journey...


Patrick's story in isolation could not be told as it is a part of a bigger story - with an ending that has yet to be written.  I guess that would be true of all of our stories - as we are not a singular being but part of a 'root system' that encompasses a series of independent but connected experiences.  And the events of our lives may seem remarkable at times...but no more remarkable than others... 
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