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.

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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.



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...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!