Cliche Resolution

 

I was mentioning to my husband that I was thinking about my somewhat cliche resolution to get back to the gym on a regular basis this year.  Last year had been filled with work travel and when I was home it seems like we were always in turmoil.  Ahhh... what cliche excuses to why I didn't succeed at my cliche resolution that I plan on 'rolling up' from the year before...

As I heard him begin to say 'I think...' I must admit that I was predicting some pearl of wisdom from my fitness committed spouse who leaves for the gym so early in the morning that it is still dark when he returns.  He has watched me recommit to fitness many times... and I was ready for the gentle nudge laced with a little 'I told you so'.

Instead he suggested that we don't think of this time of year seriously enough and give credit to people that are looking to do better, be better... Hmmmm...this isn't what I expected at all. 

His thoughtful response has made me think about what I want to do better....how I want to be better.  I know I want to be the best mom and a better wife.  I want to take better care of myself and to enjoy my time when I am home.  I want to make sure that everytime I look at the mountains that I thank God for the opportunity to see them. 

The world is fluid and it so easy to be swept in the current as it moves through time.  I think that I want to make 2013 more purposeful - decide how I want to live it instead of being at the affect of it all.  Will I make it to the gym more?... I hope so... Will I be the best mom and a better wife...I plan on it... will I be aware and thankful of every moment of it... I will do my best.

As long as I can..

As long as I can I will look at this world for both of us. As long as I can I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us. ~ Sascha,

I sit here stunned by the shooting in another school.  Why do broken people have to destroy the lives of children and their families - robbing their futures and the futures of those that know them and love them?  Why is the question that is really never answered...life's events happen in a split second...a moment... and there is no going back...no retreat or repair... things are forever changed.

As I write this the dust has hardly settled in Connecticut.  The puzzle pieces remain strewn across the school yard and the picture promises to be horrific.  I would be irresponsible to even pretend that I know what the teachers, parents or children are feeling right now...but I do understand bits and pieces.  I was both a teacher and administrator in an elementary school for years.  I was working in my 6th grade classroom on a math lesson in a neighboring Colorado school district when we were informed of the Columbine shooting, and I have lost a child.  I can imagine some of the abstract puzzle pieces as they lay across the school halls - and I know the journey that mom's have been thrust into without warning.

Patrick has been gone a long time now but every time I hear of the death of a child I can't help but reflect.  In some respects we were fortunate.  Patrick's accident happened on our dairy.  I was there - I know every moment and there are no questions about that day that are unanswered.  I was with him on the ride to the hospital and I sat across from him when they removed his life support.  I watched him drift off to heaven in seconds.  I was there for the beginning of his life and for the end - I was truly blessed.

My heart hurts for moms that don't get to be there when their babies are taken.  Those families that deal with the uncertainty when their children are stolen and found weeks, years, decades later - and no way to recreate that lost time.  At most they have speculation and perspectives but the not knowing would seem to be a barrier to peace.  And for the moms in Connecticut - how can they not be thinking about what those last moments were for their babies - hoping that everything happened so fast that they didn't have time to understand what was happening - that God's grace was there in the chaos...

I will pray for the families and for those that will experience the ripple effect forever as a result of this one isolated event.  But I will be especially thoughtful in my whispers to God for the moms.  I will pray that he wraps his loving arms around them while they lay on the bed weeping for their children and their broken dreams.  I will pray that God blesses them as he has me - with the ability to close my eyes at any time and feel Patrick's soft skin as I kiss him on the cheek...and for the ability to love him just like he is still here.  And I would be lying if I were to say that I think of Patrick everyday - but I can tell you it is almost everyday.   I see his spirit in his brother and sisters.

And my journey continues with a promise...

As long as I can I will look at this world for both of us. As long as I can I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us. ~ Sascha,

It was Thanksgiving...

Transplant doctor and Nobel Prize Winner Joseph Murray Dies

As I was monitoring my twitter account and my 'tweets'... I noticed a headline on one of my news feeds.  Joseph Murray, who performed the first Kidney transplant (first coincidence) died in his mid-eighties in Boston (coincidence # two) just days after Thanksgiving (and there's number 3).  I felt drawn to the story and feel somewhat compelled to offer my gratitude to this man that I never knew.
 
It was Thanksgiving when I sat in the unfamiliar office in the hospital that I considered my second home. Patrick's labs had been slowly declining and it was time for him to begin dialysis.  The disease that we had been able to manage independently since birth with meds and diet was now requiring something far beyond my understanding and out of my control.  Knowing this day would come and being prepared for it are nothing the same and I remember wondering how I would manage it...oddly in the midst of that waiting room my worries were selfish and immature.  Still I sat while grim reality was circling my world.

It was strange telling Patrick's story to this doctor.  Everyone else knew him.  There was never any story to tell, no dates to remember, no charts that needed to be filled in.  I didn't like him because he wasn't part of our world and I remember wishing I could retreat to the clinic that I knew so well.  The interview continued and the exam was brief - his only concern was access to Patrick's veins.  He took Patrick's arm in his hand and it looked no bigger than a twig across his palm.  He tapped his veins and rubbed his forearm until I could see his skin turn pink.  I was taking it all in...as I had always done... he was the teacher and I was the apprentice...learning how to manage this tiny boy who was the love of my life...

'I've never put a fistula into veins this small...' Abruptly I was delivered from complacency, shocked awake by his admission.  Silently declaring that Patrick would not be his first, I felt the power shift as I began to advocate as I had done so many times before.  'Where have they done it before - where do I need to take him... when can you get that scheduled...?'  His replies were short and direct 'Boston Children's...yes I can refer you... yes they have experience with infants and children... I can get you an appointment...we will get his records shipped...'

In a matter of minutes I had moved Patrick's primary care from Upstate Medical Center in Syracuse to Boston Children's in Massachusetts.  In a few days I would take our first trip south to Utica and across past Albany to the Mass Turnpike.  It would be only seconds before the doctor explained that Patrick would have a sub-clavicle catheter with an open port that would save him the torment of almost daily needles inserted into his tiny veins. It was in an instant I knew I had made the right decision.

Being a mom is a balance of judgement calls and informed decisions.  There are times to be cautious and times where risks are inevitable.  Being blessed with Patrick also meant the awesome responsibility of being that mom...the one that listens and learns - and the one that knows when to take charge.  I am blessed that God gave me the power to be that mom...

A healthier me...?

I'm not sure how many times a day we think about our diet, the food we eat and/or our overall health.  Indirectly I think it must be hundreds as we choose the apple or the cupcake or when we pull up the 24 Hr Fitness scheedule to check on the Body Pump class.  I mentioned in my post yesterday that I worked toward a more gluten free Thanksgiving meal.  Actually we are  'moderate' gluten consumers.  Megan's health requires her to avoid gluten and eat less sugar - but the rest of the family tends to be 'glutenous' about our gluten.  Isn't that always the way...

Yesterday I had the opportunity to bake with my friend, my naturopath and my nutritionist Jean Brickell.  She has an awesome business in Parker Colorado - kind of the other end of the world from us - but well worth the drive for both me and my husband.  The fact that her business is booming and requires a patient 'wait' for a new patient appointment hints at the fact that we are not alone in my concern about my health and diet.

We spent a great afternoon in her beautiful new kitchen baking delicious goodies.  There were chocoloate chip cookies and pumpkin muffins...and she shared her recipe conversions and the secrets of cooking with almond and coconut flour. Even for my most favorite recipes I can reduce the overall calories with some simple adjustments...

1/2 Cup of Honey/Agave can be substituted with 1/2 cup unsweetened applesauce and a 1/2 Z-Sweet
                                                                                               or
                                                         1/2 cup unsweetened applesauce and 18-24 packets                                    
                                                         (~2/3 of tsp = 1 packet) of Truvia

1/2 Cup of Sugar can be substituted with 1/4 cup of unsweetened applesauce sweeteners above.

1/2 Cup of Brown Sugar can be substituted with 1/2 cup of unsweetened applesauce, 2 tsps. of molasses and sweeteners above.

These handy hints seem foreign to a girl who grew up on boxed Chef Boyardee Pizzas, Little Debbie Cookies and the Twinkies that are so famous right now...but although foreign - they are surely doable.

It was a great day - thanks Jean... I think I will have a cookie now.

 Post Comments

I love having adult children...

It was an awesome Thanksgiving.  Thursday we hosted the girls and Mike for Turkey.  There was plenty of food and my 'gluten free' cooking has markedly improved from last year's rock hard brownie dessert.  We ate and had football on the TV.  We talked about what we were thankful for.  McKenzie and Dean put up the ten year old fake Christmas tree and we all shared in putting up the ornaments - most of them homemade by the kids - seemingly a thousand years ago.  Friday completed our celebration as we drove to the mountains - taking little Dean the leftovers and shuttling him to lunch in Frisco.

When I am working with the sales guys facilitating a training or meeting, I always ask about them.  They love to share about their families.  There is always a balance of uniqueness and sameness in their stories.  Some waited to have children - some had them very young.  There are musicians and athletes, students and drop outs, surprise babies and triplets for those that needed pharmaceutical help in building a family.  I love the stories and the guys enjoy the break from the intensive training we provide.

When they are done - it is my turn - and I always begin with the same story... 'I love having adult children.  I love that they all have their own homes and don't live with me anymore.  I love that they are independent and don't cost me anything...'  It's funny to read this as I am writing it because it sounds like I am glad to be done being a parent.  That somehow I have escaped from the responsibility and that I am free from the requirements that we all know so well...

Being a parent just happened for me.  Of the four children I had there was only one that was planned...and the extent of that planning was a brief but authentic conversation when Dean and I got married.  Of that conversation all I remember was my new husband thinking out loud that I already came with two - we might as well have one of our own.  It wasn't much beyond 9 months later that Dean II arrived.

The rest is just a blur of individual memories.  Births - baby foods that were loved and hated - first steps - little Dean's love of helium balloons  - Megan's long straight hair and glasses - the flute - Patrick's joy in rubbing McKenzie's back as a baby - first days at school - parent teacher conferences - Christmas trees - birthdays- you know the drill...  The 20+ years of events that just happen.  Who really plans a day and executes...rather they are just a series of unchoreograhed events.  We seemed always in a state of controlled chaos - movement - inertia - fluid - all lacking chronological sequence or even some semblance of order.  I imagine that our family - although unique - was not alone in this. As I remember correctly the game of Life would require random spins...and as you moved forward on the game board you may land somewhere that required you to go back two spaces and at any given moment there were 'pin-like' sticks in your plastic car that represented a new spouse and children...clearly someone else understood.

My children all live close.  The girls both have apartments in Denver and little Dean calls Breckenridge his home.  They are busy living their lives and have their own jobs, their own daily evens and they are individually and collectively just wonderful.  Somehow we still fit into their lives - still as their parents -but now also as their friends.  I love that I can meet the girls at the Orchards for movies and that they include me in events with their peers.  There are very few days that Dean and Dean II aren't in contact about what is happening in Longmont or in the mountains.  There are texts and there are phone calls.  None of them forced - all of them authentic.  Some looking for advice, others to share, most are friendly but with some that remind us of the intensity of their childhoods.

I love this time.  I feel like I am watching our artwork come alive.  I see myself in them, I see their dad in them and I see how life has impacted who they are.  I get to be a purposeful mom - no longer caught up in the flurry of life - but more as the coach from the sideline.  I get to enjoy the game but don't need to participate directly in it.  I love it...and I am in awe.

For many years we took the kids skiing for Thanksgiving and always attended the same buffet for Thanksgiving dinner.  It wasn't until just recently that they confessed how they would plan their attendance at the buffet line to ensure that everyone was not at our table at the same time - to delay what they dreaded most - having to share what they were thankful for.  This year as we went around the table and the children shared...it seemed more natural and not forced.  I was last to share and as I wrapped up what I was thankful for, I couldn't help but mention how great it was to not have to fight with them to share... Insightful McKenzie simply stated...'Must be we have all grown up...'

Ahhh... I love having adult children.



Post Comments

...it is truly fleeting.

The mountains are beautiful...and so are the fields and the oceans.  It is not enough to be just present - I feel the need to be daily engaged in the beauty of it all...I know it is truly fleeting.

I no longer need an event to inspire me to be thankful.  As I walk Madison in the park outside our home I can just see the mountain peaks beyond Boulder.  I am consistently overwhelmed - immediately whispering my thank you for the beauty.  The changing  seasons...the wind blowing the leaves across the park - a shooting star - hot air balloons on a crisp Sunday morning looming over the Flatirons...consistently cause me  pause.

Patrick is everywhere and nowhere - so is my dad, my brother Gary, my brother Barry, my mom... As I write this post I feel the deep loss.  The abundant Sunday pot-roast dinners where chairs were scarce and the children's table was full are now fleeting memories - with the remaining participants scattered and rarely in communication.  Death cannot help but break connections because life is all about connectedness.  Our relationships, our work, our play, our life - all a series of human interactions.

I remember when Patrick died.  There are a thousand posts to write about that time.  My experiences would seem both siimilar and different from yours as we account our feelings, our actions and the personal tragedies when we are forced to bury our children.  The story I am compelled to tell is so strong that I can't help but wonder if I shared it in a previous post.  Someone must need to hear it -

Losing a child is something you never expect.  However, when it happens, you anticipate all that is ahead of you.  Part of you is caught up in the attention of it all... there are people that want to be physically present with you at all times as if being alone will break you.  There are those that fumble over their words and you feel sorry for them and the awkward interaction.  Even into the first year - and the first few years - there is a sense of where the journey will take you...missed celebrations, the realities as you return the rented drum set and the missing plate at the dinner table.

What I didn't expect was grieving the loss of my connection to Patrick's illness and the journey that we had been on for the ten years we had been together.  The series of doctor's visits, lab tests, referrals to other doctors, hospital visits, procedures and surgeries may seem sterile and desperate ... but my experience - our experience - was that of both community and family.  The hours of actual procedure and time with physicians pales to the time spent interacting in waiting rooms, post-surgery wards and hospital common rooms with families that are living your same story.  You begin taking the journey together - a trust is built in the need to share with someone with like understanding.  You share phone numbers, you add their surgery dates to your calendar - you open your home - you celebrate the small victories and acknowledge the inevitable setbacks...and time goes by.  

The trip to the emergency room when Patrick was hurt was familiar - we had taken it a few times before - and although I knew that it ultimately wouldn't make a difference - I was adamant that they contact his renal care team in Boston to ensure the proper care.    It was like contacting family - and although I knew they couldn't help, I needed them to know.  The next day as we watched  his foreign kidney thrive and his brain die, I clung to the phone as his renal technician sobbed over our mutual impending loss.  The next day, he would be gone...

My life was forever changed.  I had lost both my son, my friends and my purpose in a single moment.  I erased the upcoming check-ups and doctor's appointments almost ceremoniously from the calendar.  I called
Lisa to check on Lacey's upcoming surgery but the conversation seemed different and the connection that was defined by Patrick had been lost.

Patrick is everywhere ... His presence with me defined me and I know that there isn't a thought or action that is independent of what he taught me.  His elementary school honors him every year with an award for the child that exemplifies who Patrick was.  His pictures are in my house, his teddy is on my nightstand and the refrigerator magnet he made me that says 'I love you mom' greets me every morning.

...and nowhere.  It has been 19 years since Patrick passed.  We live in a different state and our friends never knew him.  Megan and little Dean still remember but time and life have moved on.  McKenzie acknowledges that her memories come from ours.

Life is precious and wonderful.  I don't only go to God when I need something, I reach out to him everyday to thank him for who I am, what I have and the beauty that is my family and my country.  The mountains are beautiful...and so are the fields and the oceans.  It is not enough to be just present - I feel the need to be daily engaged in the beauty of it all...I know it is truly fleeting.

A Chance Meeting...

I am travelling again.  No upgrade to first class but I am enjoying being alone in my row in economy comfort.  Amazing the journey I seem to be on…I am hyper aware of my surroundings – of all of the complexity but somehow feel so simplistic.  Sounds deep and all ‘psychology like’ but I can’t help but tell you how profound it all is for me.

Megan brought me to DIA and I took advantage of her extra parking space in her Denver apartment building.  She had to be back at the office by 7 so I was checked in, through security and at the gate a couple of hours before we were leaving for JFK.  There were only a few of us at the gate and I was contemplating whether or not to clean out my purse.

I looked across from me at the younger woman digging through her bags.  I mentioned to her that I was glad to see her doing that…and that I was not the only one… while privately thinking that it was my age that causes me to consistently lose my cell phone in my purse.  She answered briefly and I can’t remember exactly what she said.  A few moments later she commented that I probably wasn’t from NY – she could tell by my lack of accent.  I said no…was from Denver… We talked for a few moments longer…- Where did I work?  What did I do?

I took a call and read some emails.  Still lots of time before leaving – I asked her if she could watch my bags for a few moments…telling her I would be right back.  I thought on my way to the ladies room how odd it was that I left my purse, passport and computer in the care of someone I didn’t know…but wasn’t the least bit worried.

I returned, chatted with Natalie via texts and let Dean know that I was at the gate and just waiting.  Megan sent me a text – she still couldn’t find her jump drive and asked me to look in my briefcase to see if she had dropped it there.  The gal across from me took her turn at the restroom while I watched her bags.  She came back and resumed whatever she was doing on her phone. 

Talked to my boss and called McKenzie.  She had gotten ill at work and had gone home….wanted to chat with her mom…I never take that for granted.  The young woman still interacting with her phone – caught my attention.  I hadn’t asked her what she did or where she worked – not sure why.

She looked up as I asked the questions.  She worked for Davita – its an awesome company.  I said I know – that it has a great reputation in Denver and that one of my girls was very interested in getting in for an interview.  She was here for a training – it was team building – she works in one of the clinics on Long Island.

Oddly she didn’t offer that Davita provides kidney care and dialysis centers.  Even more strange was my need to blurt out to her that I had a son that had a kidney transplant.  The shift in the conversation was immediate and I could almost see into the young woman’s compassionate and sincere soul.  She asked questions about Patrick – I told her his story.  She talked about the techs and what a wonderful company she works for.  She took my email and said that she would forward my daughter’s application.  I talked about losing my social infrastructure when Patrick died.  She seemed to understand.  She talked about how she had cried during some of the team building exercises.  I confessed to her how Patrick’s experience changed my life.

We got called for boarding and I broke out of the trance.  I got up to leave and she stood to offer a hug.  I hugged her back and know that she is now part of my journey.

I needed to share this.  I shared it with Dean via text after I settled into my seat.  I thought about it as I read my devotional and eventually had to put down a book that has captivated my attention to get this written.  The captain says we are 2 hours from JFK… I am on my second cup of coffee… back to my book.

Extremes

It has been close to a year since my conversation with Connie at my mom's memorial service.  We were standing upstairs in the Methodist church - talking about the kids when they were little and the nights that Megan would stay at her house when I had to take Patrick to his post-transplant 'check-ups'.  This was no ordinary trip to the doctor or the dialysis center.  We lived upstate and his transplant took place in Boston.  I hadn't even thought of getting his weekly checks locally - his doctors were in Boston and that is where we would go.

Dean was running the farm and Megan had to get to school on Monday morning. On Sunday evening, Little Dean would be shuttled to mom's for the night and Megs would pack her bag to head down to her friend Sarah's house.  It was like clock-work - worked into our agenda from May through July.  Weekly drives to Boston for his check-up were required and I did it the best I knew how.

'You always did everything so extreme..' was Connie's comment in the church that Saturday.  We talked for a long while but that is the only take-way I remember.  I can't exactly figure out if I choose it or if it is just who I am...but I have decided she is right.  Leaving our house at 2 am early on Monday morning - laying Patrick across the seat with his head on his pillow and his 'blankie' covering him - it didn't seem extreme...

Our schedule was fixed and it worked for us.  We would leave at 2 am on Monday morning - which ensured that we could drive the 300+ miles to Boston and be there for the first 8 am appointment.  Of course I figured in a half-hour nap in case I started to drift and carried a wind-up alarm clock that kept us on schedule.  We traveled straight south and then due east and I remember using landmarks as mile-stones on the trip.  The 8 am appointment was done by 9 and we would take a minute to visit our friends at Boston Children's.  On the road no later than 10 am, we were back at home in time for baths before dinner.  I did that for weeks...not willing to sacrifice the time together anymore than we had to.  The family settled into its routine and it worked for us.

It now seems extreme, unsafe, risky and I remember times when I would seem to 'wake-up' as I was driving.  We survived the commute and the visits evolved to every other week, to monthly and then quarterly.  He progressed and thrived... and as he felt better he was great company on our travels.

Sometimes life just requires you to just 'do it' - no thinking...no analysis... and the extreme becomes the normal.  I think that Patrick required me to be extreme - but he also brought out my best - my commitment to doing what was necessary and right.  Patrick's life would sculpt my journey -  and as I get ready for a 2-day  'work trip' to Europe this week booked solid with appointments - it just doesn't seem that extreme...

Connections

I haven’t written in a very long time…and when I was writing more often my son remarked how the story was jumping around.  I think that is true – but I find the individual posts are neither linear nor chronological…yet they are threaded through time.  My hope is that it will resonate when it is written – for whoever needs to hear it.I have been compelled to write more than once recently- but the timing wasn’t right or I moved on to the next thought and missed the moment.  This morning I am in 7F, flying to Florida to work for the next two weeks.  I have both the time and the thought is overwhelming…

Last night I opened my Facebook page to peruse my Home and was startled by a picture of my brother and sister-in-law from many years ago.  My niece had posted it as she has so many other family pictures over the last several months.  It is odd to see photos of my family just popping up – some of them I have never seen and from eras long before my time.  It startled me as I scrolled down through my Home and the other posts from friends and businesses that I had chose to ‘Like’.  Although I paused briefly I passed by it merely thinking how awesome that Erin shares so openly the memories that we collectively shared.

Still moving through the posts I stumbled on a post from her brother Andrew … whose thoughts  have a flavor of their own – much like what you would expect  from a young man in his twenties.  I was touched instantly by his words – the different tone of his writing – as he was reflecting back so many years ago when he was a kid…and what it was like to lose his father.  His words described him as his mentor – with the rest of the post an opportunity to tell those that would listen that he remembers this day when his dad was taken away.

I remember my brother vividly and could share many stories about him.  I was the younger sister with an older sister wedged almost halfway between.  I don’t have a bad memory of him and I can’t think of a time when – if I needed him – that he wasn’t there for me.  I think back on when I took advantage of that generosity and wish that I could tell him how much it meant to me…how keeping our toddler in his home for months while we navigated Patrick’s illness and transplant saved my sanity…how he was a cornerstone in the unconditional love I felt in our family. 

I remember the day he died.  He was out on a hike with his son and the scouts.  His wife out of town and our other siblings not local – we got the call.  He was gone instantly.  I made the calls, gathered the kids, reacted in auto-pilot and the rest was a blurr.  He was here and then he was gone. 

What comes to my mind as I think about him is the day of Patrick’s accident.  I don’t remember waiting for the ambulance but I clearly understood  that although he was alive – he was gone.  The ride to the hospital was surreal and I remember wondering who would have taken my other kids.  I remember my husband vaguely as he took charge and kept the broken pieces moving forward.  I heard that there were neighbors and police on site but I have no memory of any of them.  I was blessed with the saving ‘haze’ that takes over as your body and soul journey through something beyond unbearable. 

I do remember brother Barry though.  I can see his face right now – standing at the door of the hospital entrance with a look of sorrow but also with a powerful strength.  There were no words but there was a shared moment that superceded everything else.  The haze lifted for just a moment – and there was a connection that I never have forgotten.  As I journeyed through the unthinkable I carried that moment close to my heart.

It has been a bumpy flight this morning and I find it interesting that I have a window seat instead of my usual aisle.  Intermittently typing and peering at the clouds below I know that that strength and connection from that day are still part of our shared spirits.  Erin, Andrew & Jocelyn – your dad would be so proud of you…thanks for reconnecting me to my memories…Love you Barry!

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... 
 .  

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!