Farewell to my Dad

 The past month has been an unprecedented ride for our family. Things both great and small have been difficult at a level not felt since the birth of Jael. But like Jael's birth, we find the hand of the Almighty in the most unexpected of places. Below, my beautiful wife details the story of her father's unexpectedly short final days and the grace afforded her through the most difficult of times. 

There are always a few events in life that forever change you-- events that are both challenging and life altering, often leaving scars but also allowing God's sustaining hand to be seen. Jael's birth, when first I nearly died from the anesthesia and then subsequently learned about her arthrogryposis diagnosis and began a new way of living life with my sweet, medically complex little lady, was one of those events.

My dad's death is another.



While this is a hard story to write, it's an important story to remember.

It started (just!) five weeks ago, on March 22nd 2017, when my younger sister Laura called to tell me that my mom had called and was concerned about dad. Over the previous couple of weeks he'd become physically exhausted and had fallen twice for no apparent reason. He was being taken off surgical duty until they could figure out what was going on.

I carried on with life the next day, convincing myself I was not going to worry before the results came back. In my absolute worst case scenario, perhaps there was a brain tumor that they would have to remove and he'd maybe have to have chemo/radiation, and we'd maybe only have a year or so with him.  Hopefully, it would simply be forty years of round-the-clock service to his patients having ground him to a halt, and some rest and relaxation would make him hale and hearty again.

Unfortunately, my 'worst case' wasn't nearly that.

When Laura called the next day with the MRI results, I was putting Ari down for nap and couldn't grab the phone. When the phone immediately rang a second time, I knew it was bad. Two calls in a row is our code that it's an emergency. She told me the results straight forward: She didn't have good news. Dad's MRI had revealed 5 brain tumors, and the doctor who read them had told him to admit himself immediately to the local emergency room as complications were imminent. Within 24 hours, they had done a thorough workup and started to form a treatment plan. With no cancer showing up in a CT scan and his initial bloodwork being clear, he decided to have a brain biopsy done over the weekend to determine what kind of cancer it was and if it was treatable.

Still reeling, I packed up Aryel and myself and boarded a plane to Delaware leaving Micah with the larger marauders for a three-day trip to see my dad and give him a hug.

We joined my mom and both sisters at the hospital and spent some time hugging and crying and laughing together Friday afternoon. Saturday morning, good friends graciously watched Ari all day long so us 'Claytons' could be together at the hospital while dad underwent his brain biopsy.

 In the waiting room

(Every time I look at this picture taken in the hospital elevator all I can think is 'strong women')

Saturday afternoon, after a successful biopsy, Dad asked for a CT scan because he felt something was wrong (being a surgeon he knew exactly what was happening and all the implications) and indeed, the tumor swelling was significant. While the doctors continued doing everything they could to control it, by Sunday morning, the swelling had not improved. Emergency surgery would be required to save my dad's life. At the same time, my window of visitation was up -- it was time for me to fly back to MA to take care of my own family, so I did one of the hardest things I've ever done; I said my goodbye to my dad fully expecting to never see him alive again, and boarded a plane home.  

 (Ari showing off his medical skills in the ICU -- we smuggled him in as his unbounded joy at seeing his 'Pa' was just what the doctor ordered)

Amazingly, my dad pulled through the second surgery as well, fighting an amazing fight as he tried to recover his strength and hold on to see what the results of the biopsy would show. Personally, I struggled greatly with where I should be. While my family needed me in MA, I couldn't help but feel the immense heartbreak that I might be missing the last time I would ever have to spend with my dad.

It was during that week back in Beverly that God, in His mercy, gave me a clear vision of my dad. I saw my dad in his hospital bed in the neuro ICU with Laura in a chair by his side, and my mom resting at the foot of his bed. In the vision, stretching over all three was God's mighty wing, hovering over the whole room and protecting all who gathered there. Truly, what can be more comforting than your heavenly Father showing you beyond doubt's shadow that your earthly father is, as he has always been, under His care and protection.

The biopsy results came back on Thursday March 30th, a week from the initial MRI. The diagnosis: glioblastoma, an incurable type of brain cancer. Because of the nature of the diagnosis and because of how advanced the tumors were, my dad decided to enter hospice care to spend the time he had left with us.

As he got settled into his new room, I talked with Micah, and began working on a plan to visit again. He would watch the kids over a long weekend, and I would set up babysitting for the days that I would be gone.  The support our friends, family and church community provided (then and now, as they continue to bless us with meals, date nights, and unexpected gifts even after his passing) was overwhelming.  By the time I left on April 6th, we had all the help needed with meals and children.

 So it was that after creating a flow chart full of information (I can't help it -- I'm a planner!)  on who was providing daily childcare, updated schedules for each child, and help with meals, I left my family in MA and flew out to spend some time with my family in DE -- the last time that we would all be together this side of heaven.  

And what a sweet time we had- dad and his girls! As I watched him face down his mortality, I was struck by the fact that you may never  know the full measure of a man's life until you watch him face its end. My dad did so with grace, and humor, and love. We had a weekend together that was filled with memories we'll never forget. The nurses were wonderful taking care of him; friends and family helped both in DE and MA taking care of us (all of us!) so that we daughters and mom could just be together with my dad in the hospital. And so many colleagues, nurses, patients, friends, and family wrote beautiful messages to dad.  We would read the new letters to him daily as we sat with him so that he knew how loved he was.  The vigil was long and surprisingly emotionally exhausting, but precious beyond all words.  

One last selfie with dad!

I returned to MA on Monday and when I finally got into the car at the airport I had one child puking in the back seat, one child screaming "mama", a little lady happier to see me than she could put into words, one child with more than enough words to cover everyone's happiness,  and a husband who would never again underestimate just how draining five solo days with tiny dictators could be. All I could think was, "They need me!" and a little bit of peace was again restored to my heart.

Laura and dad

On April 20th, 2017,  exactly four weeks after his brain MRI, my dad, surrounded in his room by his family, was ushered by the angels through the gates of Paradise.  We don't know what he saw as he traded his mortal body for an immortal one, nor would we have words to describe it, but we can say with surety what he heard: "Well done, thou good and faithful servant... Come and share your

master's happiness!"

And until we meet again, Dad, at the marriage-supper of the Lamb, in the great and glorious feast of the ages -- we're going to miss you!

    

   

               

Normal adult conversations

... are basically non-existent in our house anymore.

In part,  because our house is a DMZ patrolled by these marauders...

They have a wonderful way of dividing and conquering - - they send an innocent-looking little baby to one side to try and distract the mama ( it almost always works)  while across the way the barriers go up. By the time we even know it, we're trapped on opposite sides of the house screaming important life details like " exactly which medication was I taking?"  This sort of thing seems like it will eventually lead to another delightful visit to the emergency room, with my face swollen up like a puffer fish.

( thankfully, that hasn't happened yet.)

The other reason we don't have a lot of normal adult conversations anymore is that I think we're both sick of talking about the super serious stuff. There's only so much you can reflect on an upcoming eulogy or exactly how much pain you're in on a scale of one to ten before it just gets a little tedious.

And so we skip the 'normal' conversation and revel in the unusual. We choose to snort when delightful younger set has an engaging conversation full of unintentional double entendre.  Literally, they had one today that I don't think I can transcribe without getting banned from this blog and /or arrested.

We choose to delight in the fact that even as life draws to a close, God's good gift of humor still remains intact. Recently Rachel's terminally ill father woke up at one point from a near -coma muttering
"crisis..."
 "averted."

So no, life won't be normal for a while, if ever. But maybe, in the mystery of God's grace, it was never normal anyway.

Kyrie Eleison

Lord, have mercy.

It has become the waking Cry of my heart - - and the anthem as I fall asleep. It has become my prayer for my wife and children - - and the subtle theme I can see woven into the fabric of our lives over the past few weeks. It is a prayer that has been heard throughout the ages, since time immemorial, but it is always heard - - and it is often answered.

How is it in this prayer has interwoven itself so deeply into our lives that I cannot think of life without it anymore?

That is a tale that may require some length in the telling. It is part brokenness, part grace, often ugly, and a testament to the fact that sharing even in a small part in the sufferings of Christ is not nearly as much fun as books make it seem.

Most of you who will be reading this have already entered into our story in your thoughts, prayers, and amazing response to needs we have both spoken and left unspoken. Thank you. We cannot say it enough. Hopefully the vignettes that are to follow on this blog will be a picture to you of the grace that you have afforded us, and your heart will be touched as well. Until the restoration comes... more stories will follow.

Memento mori

I preface this vignette today by saying that I may be writing it to feel better -- to remember the (somewhat) sweet amidst the gong show that today has been, starting with the 4am declaration by my sweet and only daughter that if I didn't lay down next to her bed and hold her hand until she fell asleep, she would scream until everyone woke up. This lady understand when she has someone over a barrel.  I acquiesced -- only to wake up at 6am to Judah towering over me, demanding, "WHY ARE YOU IN OUR ROOM, DAD? You need to leave."    And that was the high point so far. Ugh.

Anyways, as seems so often, a rough day can be redeemed by the conclusion thereof.  And so three nights ago after yet another brutal waking stretch for the urchins, we settled in at 7:00 (ok, maybe 7:25), took a deep breath, had some silent time, sang our hearts out to Jesus, and were settling in to bed when we came upon the very last part of the day -- blessings.  I generally place my hands on their hands, make the sign of the cross and ask for something on my heart for them -- peaceful dreams, kindness, ability to look each other in the eye without attempting to blacken said eyes, etc.  As I went to kiss him and head out, Elijah grabbed me and started kissing my face. (This won't be embarrassing later in life or anything.) I backed up quickly -- emotions aren't really my thing, and my sense of personal space may be overdeveloped.  "Sometimes people like it if you give them one kiss instead of one hundred.

"But, Dad," he protested," I just love you so much that I want to kiss you as long as we are alive."

My heart thawed.

He continued," Or at least as long as you're alive, Dad.  We both know you're going to die first. Love you."

Memento mori.

The Grass is Always Greener, Part 2

So a self-indulgent moment (and apology rolled into one):  Since the last post, I have passed the second of eight major career exams that I am trying to jam into the 2016 calendar year, so I finally have a tiny window of time again to chronicle the mayhem happening daily around me as I try to study.  I may simply get them all to paper (figurative paper, at least) and release them slowly over the next month.  In the meantime, enjoy this sequel...

If you haven't read the earlier aspect of this story, it may help explain a couple things.  It can be found here: http://lifeonkingarthurscourt.blogspot.com/2016/05/the-grass-is-always-greener-part-1.html

Anyways, inspired by Elijah's insecurities about the decline of his supremacy over all aspects of siblinghood, Judah woke up the next day and decided, " Gosh darn it, why should LJ have all the fun?"

And so this happened as I tried to put them to bed that evening:

Elijah:  "Dad, I have a tricky question for you."
Me: "Mmm- hmm."
Elijah: "You're not going to get it."
Me: "What's the question?"
Elijah: "Don't say I didn't warn you -- what's one thousand plus one hundred plus one?"
Me: (immediately): "Eleven hundred and one."
Elijah: "Wow! How'd you do that?"

{Sidebar: this was very really good tactically on his part because quick math in my head is about the only life skill I have left.  He should have challenged me to a memory contest -- I have the attention span of a goldfish at this point in my life, and that's insulting to goldfish -- or a karate contest. However, I was not the only one with a trick up my sleeve...}

Elijah continued, "That's pretty good. Now I'm going to give you a real hard one.  One thousand times one thousand."
Me: A million.
Elijah (not impressed this time): Fine -- did you know that I taught myself 30 times 30?
Me: What?
Elijah: It's nine hundred.
--At this point, I was thankful it was dark so he couldn't see the dumb grin on my face.
Me: How did you do that?
Elijah:  Well, they taught up in class that 3 times 3 is nine.  And I remembered someone told me that when you multiply with zero on the end, you add the zero on the end of the answer.  So I multiplied 3 times 3 and added two zeroes on the end. Nine hundred.
Me: Wow.  So what's thirty times twenty.
Elijah: Six hundred.  And twenty times twenty is four hundred.
Judah: Mmm-hmm.  It's not just LJ learning math -- I have been teaching myself math too.

Poor little fella -- I had been so enthralled with Elijah's conceptual math that I had almost forgotten he was there.

Me: Oh good, Judah.  What have you been learning?

Judah (with no hesitation):  Today in my math books I taught myself that 6 plus 6 is 11, Dad!"

He couldn't have been prouder! (I tried so hard not to howl my way out the door!)

I have a sneaky suspicion that this subling rivalry may never die...

The Grass is Always Greener, Part 1

I'm pretty sure that the writer of Proverbs knew his stuff when he said that "a brother is born for adversity."  Only in our house they don't support each other in times of adversity, they ARE the times of adversity. It's funny how that works. 

It's one of those absolutely depressing paradoxes of life that the harder you try not to pass on your deeply embedded flaws to your children, the more certain that they will have the trait branded into their soul.  After spending my entire life trying to prove that I measured up in the maniacally competitive atmosphere that was my family(I think the example that best shows the crazy going around is that four of my five siblings won a full ride to high school and after the fact, so nastily teased the only one who finished second (out of 50-odd applicants, mind you) that I wouldn't blame them if it's something still remembered), I vowed that I would raise children who knew exactly how valued they were if they never won a damn thing in their life. Even to this day, we don't say "Good boy!" or "Good girl!" but instead say, "Good action!"  to try and dissociate the person --immortal-- from the behavior, which hopefully can change.  Hopefully. Hopefully.  (Side note: this leads almost weekly a beautiful moment when you have a 2 or 5-year old running behind a baby hollering, "BAD ACTION, ARYEL!  BAD ACTION!"  as our little marauder cleans out a shelf not yet baby-proofed.

The above is of course why I have children so competitive that they assign scores to things like how well they brushed their teeth or how many toys they managed to put away during clean-up.  I don't think there's a cure for that. 

Elijah, in particular, has been feeling the soul weight a little bit lately.  As a fellow firstborn, I feel his pain acutely.  There's no applause for winning when you are inherently bigger, stronger and faster.  We have an appetite for underdogs and Cinderella stories, but nobody cheers when the proverbial Goliath stomps out David like all the Philistines thought would happen.   Judah has been recently finding his niche at soccer, bike riding and skateboarding, among other things, and poor Elijah, used to being superior in many academic ways, finally had enough one day.  "Dad!" he exploded, "Judah wins everything!  It's not fair!"

"I'm sorry," I stuttered, completely caught off guard by the outburst. Unhelpfully,  I initially tried to combat it with facts.  You read better, you love math, you're excellent at karate, etc.  I had heard, but I hadn't discerned. "No, Dad! You give him pennies and coins for his piggy bank!  You play baseball and all the things that he wants to do!  And he even wins Memory!"  (All true, and not something I had ever thought would be construed as anything but acts of love.)

But my metaphor-mixing lawyer wasn't finished.  "I don't matter about the everything else, but I just want a lucky day!"  It was all I could do to not crack up at the most serious parental moment in years.  Rough translation:  "I love him too, but I need you to affirm me!"  I pulled him aside.  "I can't make you win everything.  God gives us each special talents. But you have been given so much."  I pointed out how we each have something to contribute to the world that only we can give -- Elijah LOVES people; Judah and I are somewhat allergic to extroverts; Judah has amazing kinetic balance; Jael perserveres, etc.  And -- glory hallelujah! -- he understood. 

Crisis temporarily averted. To quote Mumford and Sons in Only Love, "
And I hunger and I thirst
For some shiver
For some whispered words
And the promise to come." I had been trying to feed the immortal desires of his love-starved soul with the moldy bread that is 'winning'.

Luckily, there's a lot that a (literal) pancake breakfast date can fix, but it was a jarring reminder that ad campaigns be darned, it doesn't get easier.  Life (and parenting) gets bigger as you go.  The stakes will only get higher and the issues more complex.  Grace be with us all.

Tune in next time for the flip side of the brotherly competition in which Judah decided to take on Elijah at math...

Sometimes it's better to forget...

So I just got back from the perfect vacation.  (Keep in mind, I'm an introvert.  This isn't going to be as exciting as you think.)

Where did I go, you ask?  The library. Every day -- except the day I destroyed an entire shed.  (That's a later post -- no worries)   I went to the third floor.  In a corner. With lots of books.  You know what I did?  I studied.  (Frankly, it didn't matter what I did.  It was hauntingly quiet.  AND -- AND ... I had a large frozen cappuccino to myself.)

It was a perfect vacation.  From 11am to 3 pm every day.  The rest of my vacation was spent with the kids, who are not nearly so blissfully quiet, but sooo worth it.... and then I got to go back to work, where this week has been so crazy that when a co-worker left on a stretcher surrounded by EMTs today, it didn't even seem that out of place.

**I'm writing this at 1 am, so this story will be short, but there are more to come.  The anecdotes that happen when you jam six people (most under the age of eight) into a tiny space just have a life of their own, like this vignette below **

It was 7:30pm, and the kids were late for bed.  Now I say this like they EVER go to bed at 7:00 when bedtime is officially charted.  Never happens.  7pm is bedtime in the Court like 55 miles per hour is the speed limit in our great state.  It's not actually expected that you follow the rule;  however, when 7:15 rolls around and we're just starting our story, I pick a nice short one under the auspices that "we're running 15 minutes late!"  No one is fooled. Anyways, we were running '30' minutes late, so Rachel had graciously stepped in to assist the bedtime process.  We were just about to start the nightly praise songs to Jesus when Judah loudly interjected, "Mom!  I need to tell you something before you sing!"

"Ok," Rachel said.  "What is it?"

Long pause.  "I don't remember."  This is standard Judah fare; the thoughts in his own head are so interesting that sometimes they mug each other before they even get down to his tongue.  Onward we proceeded through a rollicking chorus (5 of us singing, Aryel howling like a wolf) when, just before prayer, Judah burst out again, "Mom, I remembered!"

"Honey, what is it?" Rachel said.

"Mom," (here he looked at her pointedly) "Mom, I didn't want you to be here."

That boy knows how to make his mama feel loved!