Memorial reflection by Javid's uncle Dave Lapp

 

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Javid Fynn Lapp Yoder, what an oxymoronic life you lived.  While on the one hand, you got such an incredibly raw deal in life, on the other hand, for 201 days you were the luckiest kid on the planet.  See those two familiar faces that kept coming back to look down at you, those two voices that whispered, sang, read books, and laughed in your hearing ears, and those two chests where you, all too infrequently, got to stick your face and smell and feel skin and hair – well those two people were your parents and you couldn’t have scored more wonderful folks!  So while we can never know exactly what your little body could feel of all the tubes and the needles and medicine and the surgeries, it saddens us to know that you must have suffered a lot in your too too short life.  But likewise even though we also can’t say for sure how much your infant mind and emotions could comprehend of your parents, we are very happy today because as surely as you felt pain we know that you also felt passionately loved.

 

Time is too short today to do justice to all the meaning, all the questions, and all the  insights that could be pontificated about your life Javid, but bear with me as I try my hand at just a few.  See from my vantage point on the periphery during your life and death a series of seemingly contradictory, yet somehow symbiotically connected, themes jump out to me.  Themes from your life, but themes that are also a part of everyone’s life. First, the balance between caring for oneself and relying on community.  Secondly, the awesome technological wonders vs. the inevitable limitations of technology in our modern world, and finally the taxing but beautiful dance, or is it a fight, between weeping and laughing.

 

Javid, during your tumultuous life your parents balanced so well their reliance on community with their need to care for themselves.  And I don’t think it’s a stretch to say that Javid you also encountered a similar balance.  Just as your parents and a few privileged others were getting so comfortable holding you, washing you, and talking and singing to you, your heart got sick.  Such handling and over stimulation was not what you needed just then.  You needed to sleep, you needed to be left alone.  Needed time to get stronger and time to try to heal yourself.  What a wobbly tightrope the Drs and nurses had to balance as they decided, for each procedure and each change in your settings, when was the time to push and when was the time to hold off and wait for your infant body to be ready.  There’s only so much stress a person can take and even the best “support” in the world couldn’t fix the toll of the stress on your body.  While your parents are stronger than most of us, the stress took a toll on them also.

 

So while you relied on your medical community, Ana Lisa and Tony went to their communities.  And they were and continue to be so good at telling those of us in their community when and what they needed from us even when what they needed was to be alone to care for themselves.  And we in that community had to help, but we also had to learn when to accept their requests and disregard them.  Too often I find that I’m the overly cautious type, not wanting to push too hard, not wanting to offend.  When in reality it sometimes takes a push, even a push to accept care.  So how incongruous it seems that throughout much of Javid’s life it was me who was felt cared for by Ana Lisa and Tony.  It was true in person, but it was also true on-line.  I know I’m not the only one who felt that the words on that blog offered as much comfort as they solicited.  Yet another necessary contradiction for my list. But of course, Ana Lisa and Tony and Javid were forced to rely a lot on their community.  And what a strong community it is.  And how it came through for them. 

 

 

o    GranAnn and GranPaul, Nana and Pop Pop

 

o    Three Aunts and Four Uncles

 

o    And Four Cousins the only ones in your family who never got to meet you in person, but they loved you anyway.

 

And discussion of doctors and nurses, of course, brings me my next paradoxical theme:

 

pre-eclampsia, oscillators, ventilators, Necrotizing Enterocolitis, fistulas, ileostomy, bronchopulmonary dysplasia, Retinopathy of Prematurity, rickets, pseudomonas, CPAP, nasal canula, intubation, extubation, desatting, echocardiogram, pulmonary hypertension, Electroencephalogram, steroids, Viagra, bronchoscopy, CT scan, ventilation-perfusion scan, cystic fibrosis, nissen fundoplication, tracheostomy

 

These are only a smattering of all the technical jargon that was a daily part your life Javid.  Your parents are probably cringing just at their sound.  But if it weren’t for the wonders of modern medicine an even sadder day would have followed Ana Lisa’s pregnancy.  It’s easy to forget how seriously ill Ana Lisa was on October 7th, but I’ll never forget Tony calling on October 8th and saying, “I’m scared.”  We are so thankful that that pain was avoided on October 8th.  Technology saved your mother and it gave you a fighting chance.  Medicine isn’t the only technology that conducted wonders during your life while ultimately reaching its technological limits.

 

Javid, your life will never be completely separated from the website, or the Javid blog, that so totally sucked us into your story.  I suspect that if I asked for a show of hands of how many of us in this room checked that web site every day someone might walk into the room and think, “boy those Unitarians, you never know what kind of service you’re going to walk into.” 

 

Some of us who live with keyboards attached to our fingertips, checked almost every hour!  Like the NCAA basketball tournament, an economist might even calculate how much lost work productivity Javid was responsible for.  Most of us weren’t just passive readers.  Of course, part of the interest was seeing who signed the guestbook, but the wonders of cyber space still have limits and the other forms of participation can only be anecdotally documented.  For example, how many of us talked back to the screen, “Yes!  NO! 123 Pee Javid Pee!  123 Breath Javid Breath!”  And how many of us laughed out loud! How many us groaned at a bad joke?  How many of us wrinkled our brows in confusion and wonder at where Tony was coming up with this stuff.   And after something really outlandishly written, “Oh, no he didn’t!”  If only those moments could also be documented.  For me the most common reaction was frustration, “What, no update?  But it’s been 5 hours!”  Remember that one update we got courtesy of a chiding from Tony’s cousin Marcia?  Not only was this too much to ask of Tony and Ana Lisa, it was too much to ask of a website.  Because it wasn’t just updates we wanted.  As amazing and cathartic as they were and as much they helped all of us get to know you, Javid, we wanted that website to do more.  We wanted it to let us touch you and kiss you.  But most of all we wanted the fact that your life story was being so compellingly told to mean that there had to be a happy ending. 

 

Yeah, that website, was mostly written by your dad Tony, but much of it was inspired by the great material provided by your mom Ana Lisa.  What’s that saying, great material makes a great writer?  Well this website had both.  I mean put together Tony’s writing with ideas like “pump-a-lump” from Ana Lisa, we’ll let’s just say that’s a must read. 

 

This balance between laughter and the pain, between tragedy and comedy, is the last paradox I’ll mention today.  Javid you were a very funny kid without ever speaking your first word out loud.

 

 

 

 

 

 

Well done, Wee Boy!  Even though you caused a lot of pain and left some scars, you and your parents found the joy amidst that pain. 

 

After you died in the loving arms of your parents they told us privileged few that we could see you.  I’ll never forget holding your little body.  As I tucked you firmly into a football hold and cupped your head and stared at your beautiful face I could feel my own face fighting with itself. As the tears streamed out of my eyes my face jumped back and forth from contortions of crying to the biggest uncontrolled smile.

 

Perhaps that’s the greatest paradox of all.  The longer you lived, the harder you fought, the more painful it became to watch you die.  And is there any pain worse than a parent’s loss of their child?  But in the end we are so glad to have had the chance to watch you earn your name.  One could even say this story did have a happy ending.  Javid, your name means to live.  Thank you for doing that so valiantly.

 

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