The Gift of Life

Several weeks ago, we had the opportunity to attend a gathering sponsored by the Washington Regional Transplant Community (WRTC).  Each spring WRTC dedicates a day to honor and remember those individuals who have given the ultimate gift -- the Gift of Life. Donor families join recipients, transplant surgeons, members of the WRTC staff and Board of Directors and many others in the transplant community to pay tribute to donors. 

John was a donor.  On Easter Sunday, the day after JW was declared brain dead, at 9:00 in the morning, we received a telephone call from the WRTC letting us know that JW was being taken into the operating room in order to have his organs removed for donation. We of course shed tears, tears of sorrow for our son but also tears of joy from the realization that on that glorious Easter Sunday morning there were a number of families experiencing gladness and relief due to the final gift from our son, the gift of life itself. 

John's heart was transplanted into a 57 year-old retired realtor. He is married, has four children, and two grandchildren. He was on the waiting list for three days prior to transplant. He suffered from Idiopathic dilated cardiomyopathy (IDC), a disease of unknown cause that results in an enlarged heart that does not pump properly. His transplant was a success. At the time he was looking forward to returning to some of his favorite hobbies, which include cooking and telling stories to his grandchildren. He is very happy and grateful for this gift of life that John gave him.

John's liver and left kidney were both gifted to a 56 year-old married man who lives in Virginia. Prior to receiving his transplant, he suffered from a non-alcoholic steatohepatitis (NASH) liver disease which is fatal. He was on dialysis for two weeks, and he was on the waiting list for five months. Although he suffered some minor setbacks, his transplant was a success. John's recipient enjoys spending time with his family doing leisure activities. He is very grateful for this second chance at life that John has given to him.

John's pancreas and right kidney was gifted to a 53 year-old woman. She is a retired Verizon employee who has one child and one grandchild. Prior to receiving these precious gifts, she suffered from diabetes. She was on dialysis for nine months, and on the waiting list for seven months. The transplant was a success and at the time John's recipient was in good condition. She enjoys sewing and solving puzzles. She appreciates John's precious gifts.

Each year at the donor family gathering there is the presentation and dedication of the newest Donor Remembrance Quilt. Families have an opportunity to bring a quilt square in honor of their loved one.  Ten years on, we thought it was time to so honor JW and a square in his memory adorns this year's quilt.  

The program concludes with a candle lighting service. 

The Donor Family Gathering allows families to celebrate and honor the lives of their loved ones and to witness first hand how organ and tissue donation truly makes a difference in the lives of so many.

We are particularly grateful that John's niece, Ariana, was able to attend this year's gathering.  Although she never meant him in person, she nonetheless knows what a kind, loving and giving soul her Uncle Johnny was.

Ten Years On

A Strange Winter & Spring

Has resulted in something less than a spectacular cherry blossom bloom this year, ten years on.  Yet, bloom they do, year after year, as does JW's spirit.

Save The Date

10 years on.

A St. Patrick's Day to Remember

A tradition continues in posting the video at this link for the Leonard kids' trip to Ireland in 2005 -- 12 YEARS AGO!  Now, with a special, updated soundtrack.

More Warm Memories

Yet another addition to the Quilts of JW by Mom -- a king size crab quilt which, like all the others, includes remnants of JW's clothing.  It has been added to the pantheon of quilts on the lower right-hand side of the blog.

Reflections

"A parent outliving a child 

-- it's one of the most unspeakable things there is."

The above quote, which speaks for itself, is from a recent article regarding the deaths of mother/daughter Debbie Reynolds and Carrie Fisher, opining that Reynolds died of a broken heart.

I have often hoped that if other bereaved parents came upon this blog, that they would recognize it for what it has been for me, a means by which to come to terms with unspeakable grief.  Longtime readers will note the dearth of entries this year.  For the benefit of other bereaved parents, I thought that for this year-end posting, I would share my reflections as to why that is so.

First and most obvious, there is no "closure, healing or moving on" when experiencing the loss of a child.  As we are about to enter the 10th year since John's death, the grief and pain are as intense today as they were in the beginning -- perhaps even more so in that the body does not have the benefit of shock to help deaden the senses.  Not a day goes by that I do not shed a tear -- some days a whole lot of tears.  Furthermore, simple things can serve as triggers to bring back memories as real and vivid as when they were initially happening.  Just the other night I found myself driving behind an ambulance which brought back to mind that fateful trip of April 7, 2007, when we followed John's ambulance back to DC in an early Spring snowstorm.

Yet, during this same period of intense grief, John's mom and I have been able to experience the tremendous joys that life has to offer; the marriages of John's brother and sister to a wonderful daughter-in-law and a great son-in-law; the birth of our grandchildren; John's mom's retirement; my embarking on a new and fulfilling career; the initial formulation of a soon-to-come life of retirement; and other significant life events.

And therein lies the paradox for me -- as joyful as the above events are, they are also exceedingly painful since they serve to emphasize JW's absence.  When John first died, I avoided focusing on the life that could have been since I believed that to do so would be disrespectful of the full yet all too short life he did live.  However, as life continues to move on, being mindful of what could have been -- what should have been -- is unavoidable.  Which brings to mind an earlier post I had made to this blog a number of years ago but for which I have since come to an even clearer understanding of what it means:

There are two responses to trauma:

to hold onto it in all its vividness and remain its captive; or

without necessarily "conquering" it,

to gradually integrate it into the day-by-day.

Thus, whereas this blog has served as an outlet for my grief, that same grief and pain has become an indelible part of who I am today.  It can't be taken away -- if it was, I would not be who I am today; I'd be someone entirely different.  Whether I wanted it to or not, the trauma has been incorporated into my day-by-day.

In keeping with the theme of that earlier post, I've discovered another song which addresses the circle of life -- this time from the perspective of an old man with a granddaughter -- thus even more relevant than the earlier referenced songs.  Although I've heard this song before, it was only while driving to John's brother's home to see my granddaughter and grandson on Christmas Day that I really listened to the lyrics. This latest song, The Perfect Circle, is by a group known as Good Luck Mountain.  It can be listened to below:



The lyrics, as I can best decipher, are as follows:

The Perfect Circle

Knocked out loaded

Trying to get some sleep in a room of someone else's dreams

Messed up scene

And it rained all through the night

But the day breaks a real beauty and we are on our way.

The loss of mobility detailed in an old man's letters left behind in a drawer

Time advances

His granddaughter dances under a sprinkler on a hot summer lawn.

Let the good times roll

Let the hurting behold

You got to let that little girl carry on

Watching while the wheels go round

Get it before your deal goes down

Watching while the wheels go round and round and round and round

Get it before your deal goes down.

All eights and aces

We had a drink at the oasis

And by the time the queen had hit the river

The smoke had completely cleared

She was pretty as the day is long and strong

Make you forget everything you ever loved or feared

And when it rains

A perfect circle around the Kingston Dome.

Like we was saved

Once lost and wasted souls and welcomed home

Watching while the wheels go round

Get it before your deal goes down

Watching while the wheels go round and round and round and round

Get it before your deal goes down.

A shooting star

The arc of a whole lifetime in one moment

Bright stars above

These diamond days will be gone too soon

Good night my love

He kissed her forehead and he left the room

Watching while the wheels go round

Get it before your deal goes down

Watching while the wheels go round and round 

And the wheel keeps going around.

John's Presence at his Sister's Wedding

Recall this earlier post from last year when a dear friend of the family debuted the original song he composed in JW's memory at the 2015 JW Kickball & Kegger Fest.  Well, there was no way that John's little sister, Jes, was going to have a wedding and not include a fitting remembrance of her big brother who otherwise would have played a prominent role at the ceremony and festivities.  Thus, on May 7, 2016, when Jes and John's new brother-in-law, Donny, became husband and wife, John's presence was real when Stryker (the song's composer -- vocals and lead guitar), along with another good friend of the family, Aaron (percussion), and John's "little" brother, Mike (bass) closed a great three song set at the reception with a beautiful rendition of the original composition of "Johnny We Hardly Knew Ye," along with a fitting Guinness toast.  Watch and enjoy below:

A True Labor of Love

While it took 9 months for John's mom to give birth to his baby sister, Jes (actually, less since she was 6 weeks premature), it took almost 33 years to marry her off to her wonderful husband, Donny.  As such, the latest labor of love entailing over a year of painstaking design and execution in order to create the latest "Quilt of JW by Mom" was relatively modest in comparison.  On May 7, 2016, on their wedding day, John's mom presented Jes & Donny, John's newly minted, one and only brother-in-law, with a marriage quilt made, in part, out of the remnants of JW's clothing.  It is proudly added to the pantheon of JW quilts on the lower right hand side of this blog.

A Gift from John

After Jes' and Donny's wedding rehearsal at the church, John's dad pulled out of his pocket an old watch he used to wear.  He explained to Donny that he wasn't too sure where or when he got the watch, although he believes John's mom gave it to him.  He further explained that he wore that watch constantly -- that is until the day JW died.  After that, he started to wear JW's good watch, one JW was very proud of and which he had gotten not long before he had died.  John had purchased the watch in Hong Kong on one of his many trips abroad.  He liked it because it was part analogue and part digitized.  John's dad explained that while the watch was special to JW, it nonetheless paled in comparison as to how JW was a special man in Jes' life.  As such, John's dad then told Donny that since he was now the very special man in Jes' life, it was entirely appropriate that Donny proudly wear John's watch.  With that, John's dad took JW's watch off his wrist and presented it to Donny along with a warm welcome into the Leonard family as well as an admonition to make certain he wore it on his wedding day to ensure that he got to the church on time!  You can see the watch on the respective left wrists in the photos below

9 Years in 2 Photos

The photos may be of Mike & Gina, but they represent all who knew and loved JW.  We grieve his untimely death but we take solace in the love of family & friends whom he loved and who embraced him when he was alive and who have carried forth his spirit ever since.

We miss you, guy.

It's Been a Strange Spring ...

... in so many regards, yet the cherry trees bloom eternal as does JW's spirit (the trees peaked this past week).

From John's Little Sis

Oh the times have changed…

As a Leonard, you have an ability to make an entrance and an exit, even in death.  Which is why you have two anniversaries: the date of April 7 and the holiday of Easter.  While they both bring on great sadness, they also bring on the joy of remembrance.  (Not to mention the irony of the almost agnostic Leonard who went into the hospital on Good Friday only to continue your journey to the afterlife on Easter Sunday…;)

So on this Easter, I find myself thinking about all the big stuff you have missed in person – when you left, I wasn’t even sure what Masters graduate program I was going to.  So, here I am, 9 years later – not a sport psychology consultant, but a freegin’ Doctor! And where did I go to school?  West Virginia!  Who knew?  But it’s a good thing I did, because of all the bars in the world, of all the nights in the year, I met my future husband in good ol’ Bent Willey’s on July 4^th weekend, in Morgantown, WV.  And now, I’m a Mainer, getting ready for a good ol’ Southern Maryland wedding in a few weeks!  With a subtle theme of Crabs vs. Lobsters at the weddingJ 

  

And while you knew how worried I was about leaving Maxine around, you offered to take her in for me for grad school.  She lived to golden cat age of 20 before she left to meet up with you.  I finally have a new furry member of the family – Ruckus.  You would like him – he’s cute – and he knows it!

  

 I have the tattoo that you didn’t want me to have.  You talked me out of getting it in Ireland because (based on your experiences) you didn’t want me to have a tattoo that’s publically visible.  But the joke’s on you – because the tattoo is visible, it’s there as a daily reminder and a conversation starter about you! And I got Dad in the seat – how about that for fate?

There are so many things that have happened throughout the years – not to mention me being in my 30s!  And while I know you are always here with us, it’s never the same without you. While I know you are looking down on us, I always wish you were experiencing life with us, next to us.  But be sure big brother, your story and legacy live on with us.  Heck, your birthday parties continue to grow with the new generation!  So on this Easter, I cry at the thought of your passing, but I smile at the thought of your impact that you continue to have on me.  Love you lots! 

A Niece's Loving Note

John's brother Mike just found this week the below note tucked away in John's niece's backpack from school.  Ariana wrote it to and by herself, unprompted by anyone or anything -- it was just something that popped into her head and, as she says, "I just do what my brain tells me to do."  

A Truly Wonderful Christmas Gift

For Christmas, John's little brother Mike, his sister-in-law Gina, and his niece and nephew Ariana and Bentley gave John's parents the most wonderful Christmas present -- a generous donation to John's technology fund at Mother Catherine Academy -- the successor school to the kid's elementary school.  The technology fund is a tangible part of John's legacy -- a fund established to -- as Mike would like to say -- "help the big geek contribute to the formation of a lot of little geeks."  In addition to the contribution, Mike, Gina, Ariana and Bentley wrote (or in Bentley's case, conveyed through his mom) the following notes to accompany the gift (click on each image to read).

Mother Catherine itself has also become a part of John's legacy in that his Dad is now the Acting President/Trustee of this newly independent Catholic elementary school.  All of his Dad's efforts at Mother Catherine are done in John's memory and is just another way that John's legacy lives on.  Learn more about Mother Catherine at this link.

Authenticity

In an earlier post, I wrote about life according to Stephen Colbert.  That post quoted a NY Times article which stated:

In 1974, when Colbert was 10, his father, a doctor, and his brothers Peter and Paul, the two closest to him in age, died in a plane crash while flying to a prep school in New England. “There’s a common explanation that profound sadness leads to someone’s becoming a comedian, but I’m not sure that’s a proven equation in my case,” he told me. “I’m not bitter about what happened to me as a child, and my mother was instrumental in keeping me from being so.” He added, in a tone so humble and sincere that his character would never have used it: “She taught me to be grateful for my life regardless of what that entailed, and that’s directly related to the image of Christ on the cross and the example of sacrifice that he gave us. What she taught me is that the deliverance God offers you from pain is not no pain — it’s that the pain is actually a gift. What’s the option? God doesn’t really give you another choice.”

In a more recent article in GQ, Colbert talked even more explicitly about grief and suffering.  He stated: 

“It was a very healthy reciprocal acceptance of suffering,” he said. “Which does not mean being defeated by suffering. Acceptance is not defeat. Acceptance is just awareness.” He smiled in anticipation of the callback: “ ‘You gotta learn to love the bomb,’ ” he said. “Boy, did I have a bomb when I was 10. That was quite an explosion. And I learned to love it. So that's why. Maybe, I don't know. That might be why you don't see me as someone angry and working out my demons onstage. It's that I love the thing that I most wish had not happened.”

"I love the thing that I most wish had not happened."  Those are remarkably insightful words that capture the essence of life since JW died -- that somehow through unimaginable suffering it is possible to nonetheless learn what it takes to live an authentic life.  I am thankful for the opportunity -- I try in my imperfect way to fulfill the challenge presented by circumstances beyond anyone's control -- yet I would give anything for those circumstances to be different.  Crazy -- isn't it?  But it does make perfect sense.  I love the thing that I most wish had not happened.

The essence of a truly authentic life was there for all to see last week when Colbert interviewed Vice President Joe Biden on the Late Show.  Biden’s avocation as a politician has often been to tell military families who have lost loved ones in battle that it’s possible to emerge from the other side of grief. Biden was a witness to this after he lost his wife and daughter in a car accident over 40 years ago. Now Biden is back with those grieving families again having lost his son, Beau, to a brain tumor. This time Biden isn’t a prophet from the other side but in an unimaginable twist of fate he is walking with them in fresh mourning. 

If you haven’t had the opportunity, take the time to watch two earnest and authentic men talk about faith, suffering, and making sense of it all.  Some of my favorite quotes from their conversation include:

“Faith sees best in the dark.”

“What’s the use of being Irish if you don’t know that life is going to break your heart.”

 “You know you’re a success when your child turns out better than you.”

In that vein, I am a tremendous success since I have been blessed with three children, all of who are better than I was at their age.

Watch and learn:

JW's Technology Fund, con't.

One of John's many enduring legacies is the technology fund established in his memory back in 2007.    The original concept behind this fund can be found here with an update here as well as here. Mother Catherine Spalding School has now evolved into Mother Catherine Academy, where John's Technology Fund will continue to foster in young children John's love of information technology.  At Mother Catherine Academy, the computer lab has been dedicated in his memory.

"Johnny We Hardly Knew Ye"

A dear friend of the family and musical performer at each of the nine Fests to date, Stryker, composed especially for this year's JW Kickball and Kegger Family Fest a song about and dedicated to John -- "Johnny We Hardly Knew Ye."  It was composed a few weeks before the Fest and Stryker regaled everybody with the backstory.  According to Stryker, the music and lyrics just flowed to him as if through inspiration and at the very end of the composition session, the "G" (or middle) string on his guitar broke (an unusual occurrence for that particular string).  Stryker took this as one more indication of John's presence and inspiration.  The proof of this inspiration can be seen in the below photo (click on photos to see enlarged version).

At the fest, the song was performed by Gobbler's Knob with Stryker on lead vocals and guitar, John's little brother Mike on bass, and long-time friend of the family Dish on drums.  Prior to performing the debut of this song at the Fest, Stryker gave John's parents a framed presentation of the original composition notes along with the printed lyrics and a photo of his inspiration during the composition session.

The actual lyrics can be seen here.

And last but not least, a practice version of the song featuring Stryker and Mike can be heard here or below (depending upon viewing device).

Photos from the 2015 Fest

It was a hot and muggy day, but the rain never came and the 9th Annual JW Kickball & Kegger Family Fest was another great success.  Thanks to all who came out and shared in the fun and comraderie -- it was a day very much in the spirit of John.

Once again, special thanks to Barbara, John's "2nd mom," for taking so many photos to capture memories of the day.  They as well as photos from other contributors can be viewed by clicking the album below:

9th Annual JW Fest

The highlight of the day had to be the debut of "Johnny We Hardly Knew Ye," a special song composed by dear friend of the family, Stryker and performed by Gobbler's Knob with Stryker on lead vocals and guitar, John's little brother on bass and Dish on drums. The backstory to that song can be found here and can be heard here or below (depending on viewing device).

9th Annual Kickball & Kegger Fest

RSVP here.

What a Difference Eight Years Makes

2008

 2015

For those not familiar with it, central to JW's memorial at John's parents' home in Southern Maryland is a bench under the shade of three cherry trees identical to those surrounding the Tidal Basin in Washington, DC. One of John’s last days was spent lying with his fiancé under the cherry trees at the Tidal Basin while they were in full bloom. The intent was that his memorial should forever bloom on or around the anniversary of his death as a sign of hope, renewal and salvation. 

As a sign of the unusually cold winter and spring experienced this year, the trees have bloomed their latest yet, having peaked today (April 11th last year).  

The full story behind JW's memorial can be found here.  To see how his memorial has grown over the years, go to these links for 2008, 2009, 2010, 2011, 2012, 2013 and 2014 (and note the differences in when the cherry blossoms bloom each year.  For the record, in 2007 they peaked on April 1st).