The River....

I was such a child while I carried Patrick.  I talked before about meeting challenges 'head-on' but youth somehow protects us from the 'realities' that we ultimately understand  from experiencing life.  At 22 I had no concept of what was happening.  It was more like a movie that was scripted before me and my role was to move with the characters presented.  There was most certainly a flow and rhythm to my life.  Knowing in the early weeks of my pregnancy that there would be a litany of tests and procedures - a high risk and orchestrated birth - and then a series of nothing but unknowns - was not the least disrupting.  Somehow I just settled into the ride -like floating down a river with a strong current.  I knew I had to be aware and alert - but it just was.

I was a child but there was no time to be childish.  I watch now as moms laugh with their babies with a lightness that I don't ever recall experiencing as a mom.  Megan wasn't even three months old when our journey with Patrick began.  I hardly remember that time with her.  I am sure that she was safe and cared for.  I am confident that I laid on the floor with her and played with her toys.  She was fed every morning and wore pink dresses or baby overalls.  Her story would forever be impacted by her brother and as I experience an amazing and loving relationship with her now - I secretly pray that somehow she can forgive me for who I couldn't be for her then.


We lived in a little apartment in a small town not far from Binghamton.  Their dad was a banker and I don't recall working at the time.  Isn't it odd that I don't remember being home with my baby - I can't recall whether we took a walk every day or even a park that we would go to.  I do remember one night - rocking her in the small nursery we had in our upstairs apartment.   I had her snuggled close and I can see the thin mattress that sat on top of the wooden changing table.  I can recall my thoughts as I gazed at the cloth diapers clean and stacked on the bottom shelf.  I can feel now the warmth of her body as it burrowed into mine. Somehow though she would join me as a supporting member of the cast - and she would find herself floating with the current.

The initial months of my pregnancy were the easy ones - there were doctors visits but it was a feeling almost of excitement.  My upbeat and confident interactions with the specialists in the high risk clinic made me feel optimistic and the attention to my unique diagnosis was overwhelming.  "Would we want to terminate the pregnancy?"...of course not.  "Did we understand the probabilities that accompany this diagnosis?"...of course we did.  "Ok -we'll see you next month..."

And so we floated down the river...bobbing at times - but unaware of what was around the next turn.  As an adult now I understand the importance of not worrying about the future.  I get it when our pastor talks about what faith is.  Somewhere in my recent journey I heard an analogy that makes so much sense... Faith is much like the confidence and understanding that you feel at night when you are driving down a dark country road - your headlights only allow you to see the next several feet ahead - but you know that beyond the headlights there will still be road for you to drive on.

Even in my childishness and inexperience - I was fortunate to have faith.  Patrick's story would be brief ...with a current all its own and with a road that I could never have imagined.  I have matured to understand the blessing of  that intrinsic faith...the protection that it provided me then ...and the comfort and peace that is my truth now.  The river really  never began or ended with Patrick - but instead he joined me ...to float and bob along for a while...

Our normal is remarkable...

I am relatively new to social networking.  On  LinkedIn I experienced being hacked –requiring me to change my password.  My  Facebook allows me to ‘catch up’ with old friends and to openly stalk my children.  I recently opened a Twitter account and post things on occasion that have no connection to anything… and my YouTube infatuation with ‘Robin Williams comedy’ routinely gets me through layovers in the Atlanta airport.

Interacting with Pinterest is a favorite and allows me to create virtual ‘bulletin boards’ of my interests.  I never have to exchange them out and can organize as many boards as I can imagine.  For those of you that follow me you will no doubt experience the randomness of my personality.  One board in particular is pinned with famous quotes and others’ ‘thoughts’ that resonate with me in some way.  There is little commonality in the quotes I choose except perhaps a theme of thoughtfulness as I navigate the purpose and meaning of life.

This recent Pin has remained  with me and has caused me to stray from the chronological  journey of Patrick’s life that I had intended.  My initial thought was of Mindi – a wonderful young girl that I met while volunteering in church.  She was my companion during kid’s service and as I remember our time together  - my mind focuses on her laugh, the fun we had and her cool outfit.   The rolling chair, the leg braces, the uniqueness of her body – seemed as normal to me as the subtle differences we all have that make each of us remarkable.

Patrick was remarkable.  His growth was slow but his body was perfect.  A kindergarten snapshot captures a normal and handsome looking boy at half the height of his schoolmate next to him.  That was normal for Patrick, normal for his friends and normal for me.  He was small but easy to look at.  He required daily medication and monitoring but his mind worked like a charm.  His friends will tell you that there was no difference between him and them.   Patrick was unique but as I said earlier - easy to look at.  If there was ridicule or even ‘wonder’ – it wasn’t obvious in my world.

Transplants are wonderful and exasperating – life giving and challenging.  For any of you that have been part of this ‘gifting’ process you know that with all great things there comes a price.  Patrick was in first grade the year his father gave him a kidney.  That is a story in itself –  a novel of heroics and valor for another time.

Patrick and I spent his post transplantation weeks and months between our dairy in upstate New York and the Children’s hospital in Boston.   We were inseparable and as I kept strictly to his regimen of follow-up visits and medications – I watched a new little boy emerge.  This boy was even sharper – and his personality was even wittier.  As his new ‘near-perfect’ kidney took care of his physiological needs – his brain was brighter and our interactions were fun and exciting. The life saving medications were physically impacting but the changes were gradual and happened without me even noticing…

Being on leave from the postal service during his transplant created distance between me and my co-workers.  They were very supportive with cards and donations – and there wasn’t a week that went by that my mother didn’t get a call from them to check on Patrick’s status.  Several weeks after Patrick’s transplant we were home and Patrick was exceptionally mischievous and felt great.  Loading his brother  and sisters into the car we headed to the post office to ‘check in’ and thank everyone for their continuous support.  It had been several months and I was looking forward to catching up on the ‘real world’ that seemingly went on without me.

We bounced out of the car and the kids bounded to the back loading dock….eventually making it into the sorting room of the Post Office – and I was overwhelmed with the familiarity of what was my life.  Excited to talk to everyone, I rushed in and stood with the kids –and  like any other parent – I urged them to be quiet and just hang out while I went about my business. 

As I began to visit with my coworkers, there seemed to be an uneasiness that I couldn’t put my finger on.  They were thrilled to see me but distracted and I couldn’t help but notice that they had difficulty looking at Patrick as I encouraged him to share his new video game we had just picked up.  I remember not being angry but rather feeling an odd  sensation of awareness.  Their eyes and gestures told the story and I was overwhelmed by what they saw…and what I had missed over the weeks since the transplant.  Here was a round-faced and round-bellied little boy with a smile that could kill.  I had become accustomed to his growing hair and his evening baths which  required me to shampoo not only his head but the growing mane down his back.  His fingers were puffed up and he was ‘stuffed’ into the stroller we were using to help him be mobile.  It amazed me that I had not noticed the transformation – it was our normal.

Our visit was great and I remember leaving that interaction with a deep understanding of our humanness.  What we don’t understand makes us uncomfortable and fearful.  When we look at those that may be different from us we face our own fears and feel the guilty pressure as we thank God for our own health, wealth and well being.

I met that challenge head-on that day.  I pointed out his hairy back and how the medications that suppress his immune system caused him to puff up and grow hair.  I shared brushing his head and his back – and how this was all part of his journey to health.  I watched their faces relax and their words grew lighter. .. and as I watched ‘little Dean’ steal the video game out of Patrick’s hand I knew I was blessed.  My kids would live in a world where everything – in its uniqueness and remarkableness – is normal…and as Patrick grabbed his brother by the arm and whipped him to the ground…I knew our ‘normal’ was remarkable.

Strange what moments stand out vividly...

As I sit down to write this next post - I wonder why it took me so long.  I have been busy but there certainly has been time to script the next segment. Perhaps there is a conflict going on within me - although the story is fresh and steeped and almost pushing itself out on its own.  Every connection I have with people around me reminds me of a past moment; an email from church to reach out to a woman who has lost a child, a call with a new and dear friend about her brother's sudden illness... I think it is part of the story - part of the journey...part of the unpredictability.

Strange what moments stand out vividly in my mind.  As I attempt to reconstruct that time when everything was happening so fast - a new baby girl and news of another on the way - I keep going back to a vivid memory of sitting on the living room floor in our small second floor apartment with Megan in her plastic chair.  The chair was nothing like the ones moms have today - the ones with handles that new mothers carry everywhere... the ones that always prompt me to turn to the person I am with and whisper 'baby in a bucket'. Those have a look of comfort.  Megan's chair was a hard piece of plastic lined with a duck or bunny patterned  pad and supported with a wire frame you wouldn't trust to hold up a picture let alone a baby.  This vivid memory sitting cross-legged on the floor with Megan surrounded by orange, green and tan jars of Gerber's best seems so ordinary.  Maybe that is why it is so vivid - so strong - and where my mind always goes first when reflecting on that time.  It was the beginning and the end of what would be ordinary to me.

I talked earlier of how my life has been a blur of overlapping experiences.  My first introduction to Patrick Charles was in that sonogram room.  Those of you who have saved the pictures from that first peak of your baby know what I mean.  There he was real and living.  And although all around me was the sense that things weren't good or right - all I can remember was focusing as they guided me to the next room, to the next doctor and told me of the next steps.  Here I was - without counsel - and my mind shifted to a pattern that was to become 'familiar' to me.  This pattern would be familiar for not only the ten years of Patrick's amazing journey but it has become the familiar shift that I continue to make whenever I perceive my kids need me - where do I need to go and what do I need to do.


I shared the news with my husband, my mom, the rest of the family but if I were to be honest - Patrick was a personal journey for me.  I hardly remember discussing anything with anyone as I made life decisions for both he and I.  The doctors became my teachers and the lessons were life changing and daily.  Tests were scheduled and the diagnosis was made - a name as strange as the symptoms and defects that accompanied it.  The doctors talked to us about Prune Belly Syndrome and all that we could expect.  I can recall some of that conversation only because I could connect each prognosis with the experience and reality of his condition...  Loose and missing stomach muscles, impaired kidney function resulting with certainty in a transplant and the initial challenge of getting him through another 6 months of gestation.

I can't even imagine what you must be thinking now.  As I write the 'facts' of Patrick's illness I picture a sick and isolated child that would live outside the normalcy of childhood.  What's funny is I never thought that as they were talking with me - and it wasn't his reality. He couldn't have been more part of life and couldn't have been a more obnoxious and wonderful boy.  His physical being defined nothing -rather it was the book filled with the pages that his life would be written within.

I'm bursting with his story and I hope to do it justice.  His story is my story - and although his illness never defined him - I can tell you with certainty that my years with Patrick defined me.

Life is full of starts and stops...

Life is full of starts and stops.  It isn't really about endings and new beginnings - as that would signify that something is completely over and in its place - something new and fresh begins.  Life for me tends to be more of a blurred set of circumstances where somehow my life changes and causes me to pause- and adjust. Borrowing  words often shared by our Pastor as he  speaks of his own experiences...
          ...Isn't it the same for you?'


My earliest memories are of school. I remember the cots we used for naps in kindergarten and how they were stacked...the baby chicks that my mom let me take in for 'show and tell' and the first time that I wrote my name at the big desk in the den.  There was a squirrel that played in the house and a field that went on and on forever as I gazed through the sliding glass door.  I remember running outside without thought until I felt the sting of the barbed-wire below my right eye. I remember my mom scooping me up and driving me in the Rambler to the doctor.  This for me was my start - the beginning of my story...

And life continued. A series of circumstances and experiences that took me from childhood to adulthood.  Nothing too spectacular but nothing too plain either. I could write out the events but they wouldn't be unlike any of yours. I imagine there will be a time when I will feel compelled to share more about this time...about my brothers and sister...about my mom and dad.  For now my mind wanders forward towards the bumps in the road - the twists and turns in the journey.  These are the events that took my breath away...that stopped me cold in my tracks and when I knew my life would never be the same.

You might think that my high school graduation, the day I moved out to go to college or even the days that my marriage began...and abruptly ended... would be the significant events of this journey.  These events were life changing - yet predictable.  Normal and understandable - like the script for each was pre-written and I knew how it should be.  What I wasn't prepared for was the puzzled look on the face of the technician as she executed what she thought was a routine sonogram.  Time stood still and my mind wouldn't allow me to catch up as she called for the radiologist - then the doctor ...and ultimately a card was pressed into my hand with a date and time to meet with the specialist.

I was 21 and had a six week old baby girl.  I had gone to my post delivery check-up and found out I was pregnant again.  The sonogram was scheduled to give me a date - a time to expect my next delivery.   The news was odd and strange - and I felt almost as if I was watching it all unfold from somewhere else.  There was nothing predictable and I found myself on auto-pilot as I listened to the prognosis.  The baby's bladder was larger than it's head, the organs were malformed and there was no way to be sure I would make it to term.  What decision did I want to make - what were the options?

I remember laying quiet in the dark - thinking about the next minute - the next day.  As I look back on that time it was the first of many starts and stops - where life circumstances would cause me to pause...and then adjust.  Wouldn't it be the same for you?

The story begins...

If you have never driven through the Colorado Rocky Mountains on I-70 or ridden your bike up into the Boulder Canyon, you can never appreciate the awesomeness and the majesty of that experience.  It never grows old...never gets boring...there is never an opportunity to take it for granted or at the very least, to have it's raw beauty go unnoticed.

This story is a story not unlike many of yours.  It spans decades of experiences that include tragic loss, the ebb & flow of relationships, the excitement of all that is new and the eventual wisdom that comes from the ability to reflect on our lives.  I had committed to writing this story many times.  It seems that at every turn or pivotal moment of this journey I would promise that it was time to write it down.  My hope is that by sharing the nuances of my life experiences that someone would benefit - perhaps the mom of the child in the hospital would have permission to take a break from her 'task at hand' or maybe the working mother so focused on her career would stop just for a minute to really look at all she has already accomplished in her life.

Driving down 287 on my way to the office I was deliberately and fervently praying for the perfect name to this 'journal' in an effort to attract those that would not only follow my story - but would really be able to capture and appreciate the essence of how I live my life.  That is important as it is that spirit and essence that has always been there with me...providing a sense of peace and a sense of joy.

I have a few sayings that my children would recognize as my own.  'Life is a journey' immediately came to mind and I excitedly called my husband- as I was driving - to share with him that I had found the name for my blog.  As I shared the saying that I often default to - no matter what the circumstances, I was sure I had the answer...that this somehow defined the story.  But just as in all of my life experiences, the expected became the unexpected and in the time it took him to share one thought - my direction was redefined.

Through the years we have spent many hours driving through the Colorado Rockies.  Our children hiked the Alluvial Fan, they skied Breckenridge, Vail and many others, they biked in Keystone and they have walked the shops of many small mountain towns.  Simultaneously 'life' was happening around us - bringing the challenges and heartbreaks that seem to creep up out nowhere.  Many day trips through the mountains were in the shadow of an event spinning out of control, the memory of the loved one absent or the challenges of our extended and blended family.  But every drive into the mountains caused me to stop and take stock of the beauty and majesty around me.

As I shared my 'epiphany' with my husband and laughed with him as he confirmed that 'yes' I always say that - he laughed and responded with another saying of mine... 'Aren't the Mountains Beautiful'...and that was it.  That is the phrase that defines the message of my journey.  Because in reality our life is the sum of our total experiences - making us who we are - for better or for worse.  There is a spirit that allows us to rise above it all.  It allows us to smile when others think we should be crying, to let go when we fiercely want to hold on, and to escape our own circumstances and immerse ourselves in the beauty around us.

I found that my journey through the mountains allowed me to escape to what matters and rise above it all.  It was so powerful that I would passionately share it with those around me.  It is that spirit that I pull from and that you will find weaved throughout the tapestry of the story that I will tell.

I can't wait for my children to read this post as I know that each of them will be saying to themselves...we know mom...aren't the mountains beautiful!