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.