Life Is Beautiful

 

Emily, Julia, and Mommy cooking dinner.

There’s something wrong with that kid’s head.”  She has that look on her face.  Oh my God.  She’s worried, and will not be reassured with my typical Dad “She’s fine.”  Julia was only three months old, but my wife was certain that her head looked funny, and that it was too big.  I’ve always had an enormous head, so I thought it was just bad breeding, but Margot would not be placated.  Ok, fine.  I won’t do the Dad thing and reassure her.  I’ll do the doctor thing, and do a CT.  The CT came back as severe hydrocephalus.  Her brain had been squished out against her skull by the pressure of her cerebrospinal fluid – her head was full of water, not brains.  The CT looked like an alien.  I nearly puked.  Apparently, Margot was right – there was something wrong with that kid’s head.  Oh my God oh my God oh my God…

So I call a friend who is a brilliant pediatric neurosurgeon, despite being a raging coke head.  He agreed to do the surgery immediately.  My wife called her mother for help, who said she couldn’t make it – she had other plans or something.  My wife was crushed.  Felt abandoned by her own mother.  She was crying so much that our oldest daughter, who was not yet two years old, took her own pacifier out of her own mouth and tried to stuff it into her mother’s mouth.  “Here – this makes me feels better.  This is my most precious possession in the whole world – you can have it.”  Oh my God.  I call my Dad and say “Julia needs surgery, right now.  I need you to come down to Tennessee, right now, to take care of her older sister.”  He said, “On our way,” and he just hung up the phone.  The conversation took maybe 15 seconds.  Just like you’d expect.  He and Mom left their groceries on the counter in Ohio and bought underwear at a Walmart on the way down.  Of course.  Oh my God.

Julia staggering around with a half-shaved head and a sparkly balloon.

It’s hard to describe what it’s like to face losing a kid.  We held Julia in our arms, and looked into her big brown eyes – the most perfect, beautiful little girl you’ve ever seen.  And we waited for them to take her to surgery.  Wondering what the hold-up was, praying they’d get there soon, and hoping they’d never come, and we could just hold her there on the bed in pre-op forever and ever and ever and ever.  But then they came.  And then they took Julia, out of her mother’s loving embrace.  Oh my God.  And we wondered if we’d get her back.  As a parent, you’d give anything to switch places with her.  But you can’t.  It’s not fair.  The poor kid has only been here a few months, and then this?  This is not fair.  What a load of crap.  Any parent would throw themselves in front of a train for their kid.  Watching them suffer is unbearable.  Every cloud has a silver lining, right?  Wrong.  What a load of crap.  Oh my God.

Julia made it through her surgery, we made it through the healing process, and she did extremely well.  Until she was three, and the usually ray-of-sunshine Julia got grumpy, and then puked on her little pink light-up sneakers for no apparent reason.  Margot thought, “Uh-oh.”  I no longer questioned her judgment on such matters, so we did another CT right away, and sure enough, the shunt they had placed initially had broken, and the pressure was building up in her brain again.  Another emergency brain surgery.

This time, they had to decompress the brain carefully and gradually over the course of several days while giving her home IV antibiotics, so they put a shunt into her brain and fed it through a pressure valve to an external bag.  So little three-year-old Julia was running around the lawn, her head half-shaved, playing with her sisters (one older, one younger) with a tube running from inside her brain to a bag of cerebrospinal fluid she carried on a belt around her waist.

We had a huge party for her return home because we were so happy that she had made it back again.  What a tough kid.  Her sisters liked the balloons.  We were a very Barbie-intensive household at the time, and the girls had every Barbie you can imagine.  Whatever would distract Julia for a bit.  As you can see from the pictures above, she felt tired and lousy.  It was hard to watch.  We gave her whatever she wanted.  I completely understand how kids with serious illnesses become spoiled brats.

They later replaced her external shunt with another internal shunt, which drained the cerebrospinal fluid from her brain to her abdominal cavity.  After that surgery, we then waited to see if she would develop normally – if she would walk and run, if she would go to normal schools.  Every developmental step was cause for quiet celebration and renewed thanks to God.

And as it turns out, by the grace of God, that was her last brain surgery.  So far, at least.

Julia is now 21 years old now, and is a remarkable, wonderful, beautiful young lady.  She’ll be a senior at Clemson in the fall, majoring in business with a minor in stats.  She still has that shunt from 18 years ago.  And we thank God for that shunt, and for cocaine-addicted neurosurgeons, every day.

Julia, at 5’10”, gets sick and tired of short jokes from her sisters.

I’m not sure if all this has affected her.  I doubt hydrocephalus would affect her height, although she’s a short and stumpy 5’10”, while her sisters are a more normal 6’4″.  She’s the only one of her sisters that is not in Mensa, although she only missed it by two IQ points.  She’s still brilliant by normal standards.

She was a very good athlete in high school, but her sisters are world class athletes, with full rides in major sports at major division one schools.  Julia is not as quick, graceful, explosive, coordinated, agile, and balanced as her sisters.  But neither is anybody else.  Her sisters are freaks.

So is Julia different because she’s normal?  Or normal because she’s different?  It’s hard to say, because her sisters are so unusual.   But again, Julia is really smart and a very good athlete.  In any other family.  She’s a tremendously gifted kid.  Thanks be to God.

Many hydrocephalus patients have real problems with multi-step problem solving and with even basic motor skills.  You’d never know anything was wrong with Julia.  She is so blessed.

How did we handle her shunt growing up?

One of my favorite pictures – Julia handing the baton to her sister at a big high school track meet.

I never told her teachers about it unless they asked what that thing was protruding from her neck.  I never told Julia she couldn’t do anything.  If she damaged that million dollar head of hers, I figured we’d do our best to fix it.  But I did not want her to live her life in fear of the possibility of injury.  Have at it, kiddo.  Don’t worry about it.  Contact sports?  Sure.  Whatever floats your boat.  You’re the same as everybody else.  So just go play with your friends.  Life is beautiful.  Every day of life is beautiful.  Just go play.

In fact, we’ve rarely spoken about it, except when she’d have a scare, and we’d run to the hospital for yet another CT, which happens from time to time.  She recently fell and hit her head on a rock while camping with some friends – she felt really dizzy, so they had to haul her to the ER for another scan, which thankfully showed that her shunt was intact.  She got Tylenol instead of another brain surgery.  She was pleased.  So were we.

She was an unusually mature little kid.  She understood death at a very young age, and we were very open with her about what was going on.  She knows that every time she goes in the hospital, she might not come back out.  She’s worked all that out in her head.  Because she had to.  She has a strong faith in God, because he’s always been there for her.  Always.  And she knows it.

What did I learn from all this?

Nothing, I don’t think.  I knew that I loved my kid more than I loved myself.  And I knew that I would do anything for her.  Even if my ‘anything’ wasn’t much.  I would do what I could.  Whatever that was.  It’s important for parents to understand that they can’t protect their kids from everything, but you do what you can.  I learned that little girls can be pretty tough when they need to be.  But I already knew that.  If there was some profound lesson in all this, I missed it.

You do what you can.  And you hope for the best.  And that’s it.

What did Julia learn from all this?

Nothing, I hope.  Life moves on, whether you have a tube in your brain for the rest of your life, or not.  Whatever.  You’ve still got to work harder in practice than everyone else.  If you want to be any good at anything.  Moping around and feeling sorry for yourself is unproductive.  So be of good cheer, and c’mon – get going.

And she always did.  I never pushed her.  She’s always been an absolute joy to be around, and she’s always outworked everyone around her.  She’s been successful because she’s done her work.

She’s a tough kid.  But so are her sisters.  Kids are tough.  It’s their natural state.  I don’t think her medical adventures expanded her horizons.

At least, I hope not.

These are things we should all intuitively understand, regardless of what challenges we have faced in our lives.

Life happens.  Sometimes it’s not fair.  In fact, it’s often not fair.  And efforts to make life fair are universally counterproductive and destructive.  So we are left to simply accept that life is not fair.  So Julia’s just happy to be here.  As she should be.  And she intends to make the most of the gifts that God has granted her.  As she should.

Me picking up Julia at the airport after her semester studying in Singapore.

Julia is visiting for a week, over the summer.  I’m smiling at her as I type this, as she just got back from Goodwill, shopping with her sisters.  She got a Clemson sweatshirt, a nice top,  and a cute skirt.  All for $11.  She’s so pleased.  As she should be.

Life is beautiful.  It’s not fair.  But it’s beautiful.

There are so many people in this world who are perpetually unhappy because they think life is unfair.

What a waste of life.

Of course life is unfair.  But it’s beautiful, and we should all rejoice in each day, and make the most of it, like Julia.  We can all learn from Julia.

We may wish that life turned out differently.  We may wish that life treated us better.  We may wish that life was fair.

Life is not fair.

But life is beautiful.

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  1. Bryan G. Stephens Thatcher
    Bryan G. Stephens
    @BryanGStephens

    Thanks for sharing this fine Sunday, Doc. 

    Our children are so much to us. They hold our hearts hostage. 

    Facing our utter lack of control is the hardest lesson children teach us, and we get it in spades. 

    Bless you all.

    • #1
  2. RufusRJones Member
    RufusRJones
    @RufusRJones

    Great column. Anything I would say about it would fall short.

    • #2
  3. cdor Member
    cdor
    @cdor

    Beautiful Doc! What a remarkable family–such beautiful, smart, and athletic daughters. There was a conversation here at Ricochet that devolved from Simone Biles into a discussion of women athletic competition…good or bad for civilization. I would have loved to hear your take on that one.

    My father was not a complex man. He owned a business and was successful in his own upper middle class way. At his funeral my sister commented during the eulogies, “Dad never lacked for anything because he never wanted anything he didn’t have.” He was very content within himself. He too had a beautiful life. Rest in peace, Dad. God Bless you.

    • #3
  4. Bob Thompson Member
    Bob Thompson
    @BobThompson

    I love what you have given us today. Thank you.

    • #4
  5. Percival Thatcher
    Percival
    @Percival

    Dr. Bastiat: But life is beautiful. 

    So’s this column, Doc.

    • #5
  6. MarciN Member
    MarciN
    @MarciN

    My daughter had eye surgery when she was three. Everything else I’ve had to deal with in all areas of my life after that has seemed easy in comparison. :-)

    Beautiful kids. Your other daughters are part of why Julia has done so well. :-)

    • #6
  7. Bob Thompson Member
    Bob Thompson
    @BobThompson

    My wife and I also have three children, two girls and one boy in that order. The daughters both got their college degrees pretty much routinely. They both are married and have their own families. Our son was different. He was interested in music, specifically in playing the guitar. I remember having a discussion with him during his senior year in high school about his failing performance in English class because his path to graduation was in jeopardy. He said when he was in the class he was thinking about playing the guitar. Well, he made it through and was graduated on time.

    He enrolled then at the Corcoran School of Art in Washington, DC. He did that for a year but he was still preoccupied with his guitar. He then went to Utah and enrolled in a regular college curriculum for a year. That was a small disaster. As we went through a clean-up process then we worked with him to figure out what was next. He said he wanted to study playing the guitar so we helped him to spend the next fifteen months at The Musicians Institute in Hollywood, Ca.

    Then he returned to Northern Virginia and began a career in music as a blues musician playing the guitar, a band leader, a songwriter, and everything else it takes to fulfill that role. It’s is not easy and probably seems unfair at times. We have always helped.

    Along the way he did take college courses at Northern Virginia Community College and eventually enrolled in a degree program at George Mason University, But he dropped out a semester short of earning that degree.

    We have fretted about that for some time, especially his mother.

    The Covid pandemic put him out of work almost completely since most of what he did musically was public performances. So he shifted his focus, set some new objectives in several areas, and re-enrolled at George Mason University to finish his degree program.

    This past week, after three decades,  he finished the academic requirements for his Bachelor’s Degree. Of the six courses he took during this period he earned five A’s and one B and is on the Dean’s List. That’s his best academic performance ever.

    We are all happy and grateful but his mother most of all.

    @drbastiat Thanks for the opportunity to comment on your great post about family.

    • #7
  8. Douglas Pratt Coolidge
    Douglas Pratt
    @DouglasPratt

    Thank you for at least ten minutes of the kind of tears no man should be ashamed of. 

    Life pulls stuff like this on us. We handle it as best we can, never as well as we should. Few of us can tell the story as well as you have, and that is what I thank you for. My life is a little more blessed thanks to your skill and willingness to share.

    • #8
  9. EJHill Podcaster
    EJHill
    @EJHill

    I wasn’t expecting an endorsement of cocaine and scalpels.

    We almost lost two of ours. “Theater Boy” was born 11 1/2 weeks premature. Our Marine contracted RSV two weeks after he was born. Took him to the ER and while we were waiting to be seen he stopped breathing. When they ripped him out of my arms and shoved me out of the room I was never so scared in my entire life. 

    • #9
  10. MarciN Member
    MarciN
    @MarciN

    EJHill (View Comment):

    When they ripped him out of my arms and shoved me out of the room I was never so scared in my entire life.

    I have had a couple of those moments too.

     

    • #10
  11. TBA Coolidge
    TBA
    @RobtGilsdorf

    Place this next to any homily given this Sunday. It is unlikely you will find better. 

    • #11
  12. Western Chauvinist Member
    Western Chauvinist
    @WesternChauvinist

    This strikes a little too close to home, Doc. Our youngest has NF and developed a tumor on her brain stem that required three surgeries (due to complications) in four days, and external drains to resolve the hydrocephaly caused by the blood clot blocking the fourth ventricle. We were thisclose to her going in for a fourth surgery to create an ostomy we opted for rather than the permanent shunt. Such was the precious real estate the surgeon was operating in, he explained any mishap would be instantly lethal. It was a minor miracle that her pressures resolved and the shunts were removed. 

    A young woman who pushed our Little Miss Anthrope between sites in the wheelchair told us how LMA’s brain surgeon was her personal hero, because he’d replaced her internal shunt seven times! That contributed to our decision to go with the ostomy. Thank God your Julia has avoided that. 

    I’ll never forget walking our LMA down the hall to the surgical suite for her first surgery. We were told in advance to say to her, “see you soon” in order to reassure her. She was eleven at the time. She came out of surgery nine hours later (surgeon had estimate five hours) and we were the only family left in the waiting room by then. The staff had actually handed us a phone and said, “if it rings, it’s for you.” 

    That was the start of months of trauma, including the worst — meningitis. Administering IV antibiotic through her PICC line on a strict 12-hour schedule (to avoid toxicity if too soon, or bacterial rebound if too late) was the most stressful two weeks of my life. 

    We’re still dealing with the trauma, so I fear LMA isn’t thriving to the degree your daughter is. But, we keep going (and her mother keeps praying) and we are comforted when young people tell us encouraging things about how our handling of the situation has inspired them. It’s made me quite philosophical about the meaning of suffering.

    • #12
  13. Jimmy Carter Member
    Jimmy Carter
    @JimmyCarter

    Western Chauvinist (View Comment):
    and her mother keeps praying

    And so do We.

    • #13
  14. Muleskinner, Weasel Wrangler Member
    Muleskinner, Weasel Wrangler
    @Muleskinner

    Dr. Bastiat: So we are left to simply accept that life is not fair.  So Julia’s just happy to be here.

    That is what we learned from our son’s seven-year odyssey with ADEM/Optic Neuritis. What they assured us was a one-time event made an annual return. So all in all, he learned to walk about three times, once was paralyzed to the point where his only voluntary movement was to close his eyes and another time was nearly as bad. The prednisone and other drugs used to keep his immune system in check made him short, fat, and prone to ‘roid rage. Later on, monthly IVIG infusions left him with days of blinding headaches from aseptic meningitis, until we were finally able to wean him off everything when he was 13. And we learned from all the times at a Children’s Hospital, that no matter how bad it looks, there is always something to be grateful for.

    I used to wonder what he took away from those experiences, other than life isn’t fair, and a wicked sense of humor. He enlisted in the Navy at 19, and true to his luck, broke a foot just before the end of basic training. He sounded so down when he called to tell us not to come to his graduation and that he was going to be separated from his training division, that I was really worried about him. Every couple of weeks he’d call from the recovery unit, sounding more and more hopeful, and then actually happy about his prospects. Like most boys, he was never one to tell us much about how he was feeling, but a couple of weeks after he finally completed basic training, Ms Skinner saw a Facebook post from another sailor who had just finished basic training after spending a couple of months in the recovery unit. This young man was proud to say that he’d completed the hardest experience he had ever faced. He said that basic training was hard, and how much harder it was to be injured, separated from your unit, not knowing what was going to happen next, and how depressed he was. He thanked several of the instructors and others who helped him get through basic. Then he mentioned our son by name. Boom-Boom, he said, must have felt all of the things I did, but he never let them get him, or me get down. Boom-Boom taught him to be patient, keep the faith, and how to find silver linings. After reading that, I knew for sure that our son had learned to do more than just cope, but how to find and share the good, despite the unfair things life threw at him.

    Life isn’t fair, but I’m happy that our kids are with us. I’m  happy that they are happy, and have good things to teach us.

    • #14
  15. Western Chauvinist Member
    Western Chauvinist
    @WesternChauvinist

    Jimmy Carter (View Comment):

    Western Chauvinist (View Comment):
    and her mother keeps praying

    And so do We.

    Thanks Jimmuh. 

    • #15
  16. Hartmann von Aue Member
    Hartmann von Aue
    @HartmannvonAue

    Thank you. God bless you and your family. 

    • #16
  17. Dr. Bastiat Member
    Dr. Bastiat
    @drbastiat

    Western Chauvinist (View Comment):
    including the worst — meningitis. Administering IV antibiotic through her PICC line on a strict 12-hour schedule (to avoid toxicity if too soon, or bacterial rebound if too late) was the most stressful two weeks of my life. 

    Yeah – Julia went through that too.  For two weeks, she was on IV antibiotics at home every 6 hours.  The antibiotics had to be stored in the fridge, but they had to be administered at room temperature.  I was working insane hours as a young doctor then.  My wife was breastfeeding our youngest,  so wasn’t sleeping much.  And every 6 hours, she would get up, get the antibiotics out of the fridge, lie down with the antibiotics held against her chest to warm them up for a bit, then administer them to 3 year old Julia.

    One night, Margot fell asleep with the antibiotics against her chest.  I woke to her weeping in Julia’s room, giving her antibiotics while she cried:  “I’M 80 MINUTES LATE!!!  OHMYGODIKILLEDHER!!!OHMYGODOHMYGODOHMYGOD!!!!”  She cried all night, and didn’t really sleep after that.  For months.  She checked on her constantly.

    That was a rough time.

    We are so blessed that everything turned out ok.  So blessed.

    I wish you the best in your continued struggles.  It’s not easy.

    The reason that I mentioned Margot’s unhelpful mother and the coke-head neurosurgeon was to point out that we’re all flawed people, doing the best we can.  Well, except for her mother, I guess.  But you get the point.  Nothing is ever perfect.  We do the best we can.  We play the cards we’re dealt.  Because that’s all we’ve got.

    • #17
  18. Dr. Bastiat Member
    Dr. Bastiat
    @drbastiat

    Incidentally, the pictures of Julia with her bandages and such were taken by my wife Margot, after a brief but important argument with me:

    Margot:  Give me the camera.  I want to take some pictures of Julia with her shaved head and bandages and stuff.

    Me:  No.

    Margot:  Why not?

    Me:  I don’t want to remember this time.

    Margot:  I do.

    Me:  No.

    Margot:  Yes.     * wife look *

    So we got pictures.  Now, I’m glad we did.  But at the time, I just wanted the hell we were living in to go away, and to never be spoken of again.  I didn’t even want to write this article about it.  It’s just awful.

    But Margot is right.  Sometimes, it’s important to remember, painful as it is…

    • #18
  19. Western Chauvinist Member
    Western Chauvinist
    @WesternChauvinist

    Dr. Bastiat (View Comment):
    One night, Margot fell asleep with the antibiotics against her chest.  I woke to her weeping in Julia’s room, giving her antibiotics while she cried:  “I’M 80 MINUTES LATE!!!  OHMYGODIKILLEDHER!!!OHMYGODOHMYGODOHMYGOD!!!!”  She cried all night, and didn’t really sleep after that.  For months.  She checked on her constantly.

    Terrifying. My sister the doctor slept in LMA’s room with her for those two weeks so that I was able to get some rest. Some. Then I took over and slept in her room for probably another month after that.

    When the visiting nurse came to remove her PICC line, it got stuck. And that was it for me. I had reached my limit and couldn’t bear to watch my kid suffer anymore. I retreated to our bedroom and lay prostrate on the floor begging God for mercy. 

    One thing about going through trauma like that is it makes you appreciate the “normal” days. And we’ve had many of them and, as you say, we better enjoy the beauty of life because of it.

    • #19
  20. Some Call Me ...Tim Coolidge
    Some Call Me ...Tim
    @SomeCallMeTim

    Fantastic post, as usual.  One day you will write a merely great post; and we will all be very disappointed.

    You are right about kids being resilient.  They’re pretty tough (that’s why them call them bouncing baby boys/girls – they bounce right back).  Kids generally play the hand they’re dealt.  The critical part in that statement is how the dealers of that particular card game (their parents) deal with whatever the situation is.  I saw it during Katrina: kids whose parents were calm about the storm and everything that went with it took everything in stride.  Kids of distraught parents had a much tougher time.  It seems like you and Margot were great card dealers.

    The FEAR – there is nothing like it.  I am not a very brave man, but the only times I have ever really felt FEAR – the icy hand crushing my heart – all had to do with my kids being hurt.  Nothing else has ever come close to that frozen ice-pick stabbing my chest, except maybe when Mrs. Tim tells me that “we need to talk.”

    • #20
  21. Stad Coolidge
    Stad
    @Stad

    Dr. Bastiat: she’s a short and stumpy 5’10”

    Having met Julia, I’ll say two things.

    1. I think she’s 5’11”, because I’m the same height and I could look directly at her eyes, and
    2. The shunt worked.  She is remarkable . . .
    • #21
  22. Keith Lowery Coolidge
    Keith Lowery
    @keithlowery

    Your post reminded me of this quote from C.S. Lewis’ The Problem of Pain:

    The settled happiness and security which we all desire God withholds from us by the very nature of the world; but joy, pleasure and merriment He has scattered broadcast. We are never safe, but we have plenty of fun, and some ecstasy. It is not hard to see why. The security we crave would teach us to rest our hearts in this world and pose an obstacle to our return to God: a few moments of happy love, a landscape, a symphony, a merry meeting with our friends, a bath or a football match, have no such tendency. Our Father refreshes us on the journey with some pleasant inns along the way, but will not encourage us to mistake them for home.

    Thanks for writing. 

    • #22
  23. Vance Richards Member
    Vance Richards
    @VanceRichards

    Dr. Bastiat: She’s worried, and will not be reassured with my typical Dad “She’s fine.” 

    Thank God for moms.

    Dr. Bastiat: Until she was three, and the usually ray-of-sunshine Julia got grumpy, and then puked on her little pink light-up sneakers for no apparent reason.

    The throwing up is bad. But I know my son was just about one of the best behaved babies I’ve ever seen. Then when he turned three he became a bit more cranky and disobedient. When he was at one of his doctor visits, my wife asked about that and the doctor gave his professional opinion, which in this case was 100% correct. He simply said, “He’s three.” Terrible twos? Just wait a year.

    • #23
  24. Keith Lowery Coolidge
    Keith Lowery
    @keithlowery

    But Margot is right. Sometimes, it’s important to remember, painful as it is…

    @drbastiat – I’ve debated sharing what I’m about to share. I had the unenviable task of burying my own 30 year old daughter on January 20, 2020.  She died unexpectedly of an accidental drug overdose. I know all too well the fear for a child and the disinclination to remember.  But I think your wife is very wise in her insistence on hanging onto even painful memories.

    This is a snippet from the remarks I made at my daughter’s funeral that awful day. They seem somehow relevant to your post:

    A theme which [my oldest son] alluded to, and which [my youngest son] unpacked in more detail, is that one of the most seductive lies of our time is that our appetites and desires are indistinguishable from our identities. Our daughter’s decision to follow her appetites, wherever they led her, proved ultimately fatal.

    But we had desires too. Let me tell you about our desires. Well, my desire was to be free of pain. My desire was to be free of the desperation a father feels when his child’s life is slipping away, like water through his fingers. My desire was for the hellish, sleepless nights of worry to just go away. Like my Lord, I wanted to, and did, cry out, “let this cup pass from me”.

    But does it follow that just because I desired those things I should have celebrated them and declared “pain free living” to be my identity? Should we have made our own comfort the measure of our lives? Should anyone make their desires the measure of their lives? Or should we have done what we did, and given ourselves over to the pain that accompanies self-denial  – giving ourselves over to the exact opposite of our appetites and desires – to try to rescue someone who bore the very image of God and mattered so terribly much? Don’t hear me to be saying that we did this perfectly. We most certainly did not. Sometimes due to fear or exhaustion or confusion we recoiled. We sometimes felt like we were living in a house of mirrors filled with fog. We often didn’t know what we were doing, and we felt alone in our search for answers. Not least because there has been so much that we have had to unlearn from our prior understanding of the way the world works.

    The inescapable paradox of reality is this: Love takes form, not in the celebration of ourselves, but in the denial of ourselves. That’s the wonder of it. And the more we celebrate ourselves, the more elusive love becomes…We’ve learned that joy is something that can be chosen, and that the choosing of it is inseparably bound up with gratitude. But it is an act of the will, in the midst of suffering, to recall how much we have to be thankful for.

    • #24
  25. Bryan G. Stephens Thatcher
    Bryan G. Stephens
    @BryanGStephens

    Keith Lowery (View Comment):

    But Margot is right. Sometimes, it’s important to remember, painful as it is…

    @ drbastiat – I’ve debated sharing what I’m about to share. I had the unenviable task of burying my own 30 year old daughter on January 20, 2020. She died unexpectedly of an accidental drug overdose. I know all too well the fear for a child and the disinclination to remember. But I think your wife is very wise in her insistence on hanging onto even painful memories.

    This is a snippet from the remarks I made at my daughter’s funeral that awful day. They seem somehow relevant to your post:

    A theme which [my oldest son] alluded to, and which [my youngest son] unpacked in more detail, is that one of the most seductive lies of our time is that our appetites and desires are indistinguishable from our identities. Our daughter’s decision to follow her appetites, wherever they led her, proved ultimately fatal.

    But we had desires too. Let me tell you about our desires. Well, my desire was to be free of pain. My desire was to be free of the desperation a father feels when his child’s life is slipping away, like water through his fingers. My desire was for the hellish, sleepless nights of worry to just go away. Like my Lord, I wanted to, and did, cry out, “let this cup pass from me”.

    But does it follow that just because I desired those things I should have celebrated them and declared “pain free living” to be my identity? Should we have made our own comfort the measure of our lives? Should anyone make their desires the measure of their lives? Or should we have done what we did, and given ourselves over to the pain that accompanies self-denial – giving ourselves over to the exact opposite of our appetites and desires – to try to rescue someone who bore the very image of God and mattered so terribly much? Don’t hear me to be saying that we did this perfectly. We most certainly did not. Sometimes due to fear or exhaustion or confusion we recoiled. We sometimes felt like we were living in a house of mirrors filled with fog. We often didn’t know what we were doing, and we felt alone in our search for answers. Not least because there has been so much that we have had to unlearn from our prior understanding of the way the world works.

    The inescapable paradox of reality is this: Love takes form, not in the celebration of ourselves, but in the denial of ourselves. That’s the wonder of it. And the more we celebrate ourselves, the more elusive love becomes…We’ve learned that joy is something that can be chosen, and that the choosing of it is inseparably bound up with gratitude. But it is an act of the will, in the midst of suffering, to recall how much we have to be thankful for.

    Bless you. 

    • #25
  26. Basil Fawlty Member
    Basil Fawlty
    @BasilFawlty

    Dr. Bastiat: I’m not sure if all this has affected her.  I doubt hydrocephalus would affect her height, although she’s a short and stumpy 5’10”, while her sisters are a more normal 6’4″.

    Say what?

    • #26
  27. Goldwaterwoman Thatcher
    Goldwaterwoman
    @goldwaterwoman

    There is absolutely no substitute in this world for a caring family. You and your wife are an inspiration to us all. 

    • #27
  28. Percival Thatcher
    Percival
    @Percival

    Dr. Bastiat: She’s the only one of her sisters that is not in Mensa, although she only missed it by two IQ points.

    Those tests aren’t accurate enough for two points to mean much of anything at all. A variation of up to fifteen points is not out of the question. Scoring lower could mean that you are having a bad day. Or that you are higher than the first twelve rows at a Grateful Dead concert.

    • #28
  29. Western Chauvinist Member
    Western Chauvinist
    @WesternChauvinist

    Keith Lowery (View Comment):

    This is a snippet from the remarks I made at my daughter’s funeral that awful day. They seem somehow relevant to your post:

    A theme which [my oldest son] alluded to, and which [my youngest son] unpacked in more detail, is that one of the most seductive lies of our time is that our appetites and desires are indistinguishable from our identities. Our daughter’s decision to follow her appetites, wherever they led her, proved ultimately fatal.

    But we had desires too. Let me tell you about our desires. Well, my desire was to be free of pain. My desire was to be free of the desperation a father feels when his child’s life is slipping away, like water through his fingers. My desire was for the hellish, sleepless nights of worry to just go away. Like my Lord, I wanted to, and did, cry out, “let this cup pass from me”.

    But does it follow that just because I desired those things I should have celebrated them and declared “pain free living” to be my identity? Should we have made our own comfort the measure of our lives? Should anyone make their desires the measure of their lives? Or should we have done what we did, and given ourselves over to the pain that accompanies self-denial – giving ourselves over to the exact opposite of our appetites and desires – to try to rescue someone who bore the very image of God and mattered so terribly much? Don’t hear me to be saying that we did this perfectly. We most certainly did not. Sometimes due to fear or exhaustion or confusion we recoiled. We sometimes felt like we were living in a house of mirrors filled with fog. We often didn’t know what we were doing, and we felt alone in our search for answers. Not least because there has been so much that we have had to unlearn from our prior understanding of the way the world works.

    The inescapable paradox of reality is this: Love takes form, not in the celebration of ourselves, but in the denial of ourselves. That’s the wonder of it. And the more we celebrate ourselves, the more elusive love becomes…We’ve learned that joy is something that can be chosen, and that the choosing of it is inseparably bound up with gratitude. But it is an act of the will, in the midst of suffering, to recall how much we have to be thankful for.

    Amen, Keith. I believe there’s a special place in heaven for parents who bury their children. God love you.

    • #29
  30. Dr. Bastiat Member
    Dr. Bastiat
    @drbastiat

    Basil Fawlty (View Comment):

    Dr. Bastiat: I’m not sure if all this has affected her. I doubt hydrocephalus would affect her height, although she’s a short and stumpy 5’10”, while her sisters are a more normal 6’4″.

    Say what?

    We have tall little girls.

    My wife and I are not incredibly tall.  I’m 6’2″, and she’s 6’1″.  I’m not sure what happened to our kids.

    A 6’4″ woman is equivalent to a 6’11” man.  

    It’s weird looking up at my daughters.

    • #30