Chromosomes, Cancer & Kids

Graduation Day

Had he lived, Joshua would have graduated from high school today. 

A big day for any kid.  A proud day for any parent.  A momentous day for someone with Down syndrome.

Josh loved school.  He loved to learn and he really loved the social life.  Everyone knows Josh.  Everyone was his friend.

We planned his graduation party years in advance.  It would have been a blast.

We're going to graduation tonight anyway.  We'll watch especially for the other kids from his special needs classes as they walk.  We'll cry through the video they are playing in memory of Josh and several other students and a teacher who passed before this graduation day.

We miss you Big Guy

Field of Hope

Field of Hope.  Funny way to describe a cemetery, but that's what I felt - Hope.  It was Christmas Eve, about 9:30 in the evening.  We were dropping by the boys' graves to leave some candles. 

As we drove through the neighborhoods on the way, we saw families gathering at grandpa and grandma's.  You know a half dozen cars in the drive, people carrying gifts, lots of smiles.

I expected we'd be the only ones at the cemetery at that hour, but there were a lot of other visitors. 

Most of the graves had been decorated for weeks.  This was people wanting to spend part of Christmas Eve with their departed loved ones. 

We would pass them in the snow, exchange a quiet "Merry Christmas".  Acknowledging a shared pain.

But there was more.  The cemetery was aglow with hundreds of candles and luminaries.  Each one carefully placed and individually lit.  After we tended to Josh and Ben's graves, we drove through the rest of the cemetery. 

I felt as though the lights represented our desire to remain connected with our loved ones.  More than a desperate longing, but a symbol of hope that we would be reunited.

Hope that some bright morning we'll all be together again. 

Hope has become a pretty watered-down word these days.  "Hope you have a good time :)" 

When the scriptures use the word hope, it's not a meek and mild term. 

"A perfect brightness of Hope"  "Hope in Christ"  "Hope of Israel" "Abound in Hope" "The Comforter filleth with Hope". 

It's real, it's powerful and it comes from God.

A field of Hope.

Charles Dickens or Monty Python?

I'm tempted to characterize going through the Holidays after the death of a child with Dickens' opening lines in a Tale of Two Cities, "It was the best of times.  It was the worst of times."

I love feeling the Christmas spirit.  I love how everyone seems to smile easier.  I really love hearing Nancy laugh.  It's fun to watch Jon, Alyshia and Natalie get their little families ready for Christmas.  Aaron and Sadie are very much into the season.  The Best of times.

Then come the memories when you hang the stockings of two who will never again sit around the Christmas tree.  All  those tree ornaments that they made in school. 

The joys of Christmas create strong memories that last the years.  Who among us can't be teleported back to a particular Christmas, triggered by a smell, song or sight?

This weekend, Nancy, Sadie and I caught a matinee at the theater in the mall.  We laughed so hard and were having such a good time.  We stopped at Red Robin for lunch.  After we ordered I was looking around. 

All of a sudden, I was transported to a week before Josh died when he, Aaron and I went to a movie and then lunch at Red Robin.  We knew Josh was going to die and we were getting in as much time together as possible and make some memories.

On the wall was a poster for Blues Brothers 2000.  That was one of Josh's favorite movies (I would always skip past the dancing girls, thank you for being concerned).  He loved the music and we would listen to the soundtrack CD over and over.

I was suddenly overcome.  I just put my face in my hands and sobbed.  I'm not sure that's ever happened in public before.  Sadie climbed under the table and loved me.  The Worst of times.

About a year ago, I received an e-mail from a fellow who had lost a child several years before.  He said, "Don't let the loss define you."  As I've thought about what that meant for me, I've broken it down:

There's no questioning that having a child die is a defining moment. It's every bit as monumental as having the child in the first place.  I can't recall ever talking to a parent that didn't consider bringing a child into their family as defining.  Plumbing the depths of your love and commitment, defining what kind of man or woman you want to be, defining the kind sacrifice you're willing to make.  Every mature parent is fundamentally changed.

Burying a child forever changes you - deeply and profoundly.  Those questions a new parent struggles to answer about his or herself need to be asked again:  What kind of man do I want to be?  Am I willing to love freely again?  Will I engage life again?

What must not define you is your grief.  And believe me, that's easier said than done.  I read that when a parent loses a child, they lose so much of themselves (and their future) that they need to reinvent their lives.  It's a kind of a "do over".  If you're stuck in your grief, this will never happen.

For me at least, you can't really being the rebuilding until you've been down the road far enough to glimpse the possibility of a life (new or otherwise).  The literature says that for many, that point comes after about two years.  I can see that for me and my family.  I can see getting better.

It's been nearly three years since Josh died and almost two since Ben died.  That is a long time.  Yet it feels like it was a few months ago. 

I recently talked with a woman who lost two sons over 20 years ago.  I watched as she traveled back across those years in an instant.  She said that the pain is always as acute - it just comes less frequently and lingers for less time as the years go by.  I can see that too.

So maybe I want to describe my feelings this Christmas in the terms of Monty Python and the Holy Grail - "I'm getting better!"

Jiffy Pop and BB Guns

About 5 months before Josh died we went camping at Bear Lake.  We packed up the trailer and headed up to the Huntsman Cancer Institute for a radiation treatment and then on to the Lake.

When I was shopping for the trip, I picked up some traditional treats: stuff for smores and chili and Spaghettios.  When I was a kid we always had chili and Spaghettios mixed on campouts (I think it was probably born of not enough of either one day, so Mom combined them). 

Then I saw some Jiffy Pop popcorn.  I didn't even know they still made it, so I bought a couple packages to make at camp, just like when I was a kid.  I thought that Josh and Sadie especially would get a kick out of watching it pop.

We had a blast on that trip.  We rented a speed boat, swam in the lake, rented recumbent trikes for the kids and made smores around the campfire.  I think we also had pizza three times - at Josh's insistence - and the famous Bear Lake milkshakes.  What we didn't do, was make the Jiffy Pop.  I frankly just forgot.

Nancy, Sadie and I were going to watch a DVD Friday night and wanted some popcorn.  I rummaged through the pantry, couldn't find any microwave popcorn, but did find the Jiffy Pop buried in the back.  The hopes I had for those packages of Jiffy Pop flooded back.  More than a twinge of regret that I didn't get to share Jiffy Pop with Josh.

I have another regret.  During the next few months before Josh died, he liked to come to work with me sometimes.  He would bring his "work clothes" on a hanger (khakis and a dress shirt) and change in the bathroom.  He would read or draw.  Sometimes he would go into the conference room and watch TV.  He made a channel list - called Josh - of his favorite channels.  Sometimes I go in there just to see his name up on the TV screen.

One of the things we would do together is go into the studio and shoot my BB gun.  (Hey, the other guys throw a football or play darts - I have a BB gun).  It was fun for me, but Josh really liked it.  He would ask to shoot almost every time he came to work.

Sadly, there were too many times when I would say, "Not today.  How about next time."  Josh was a good sport about it.  The problem is that we ran out of "next times".

Aaron got a part in Thornton Wilder's play Our Town.  We rented the video and watched it last night.  In the cemetery seen, those who had died commented several times how those who were living just couldn't see.  How they didn't look at each other and see because of the distractions of everyday life.

One said, "They walk around in a fog and trample the feelings of those around them."  I admit that I struggle to break away from busyness to engage what's real and important.  Sometimes, it just easier to be numbed from grief and the pressures of life and just skim along.

That's no way to live.  I keep our target from mine and Josh's last BB shoot on the wall of my office to remind me.

It's Time to Go Home

The first time Josh told me he was going to die was 4 or 5 months before he was diagnosed with cancer. 

Josh and I had just gotten in the car and were pulling away from the house.  He said something that I couldn't quite understand so I asked him to repeat it.

He pointed at the clock in the car and said, "It's time to go home."  I said, "We just left.  We'll go home after we go to the store."  Josh replied, "No," and pointed to the sky, "time to go to my Dad in Heaven."

That rattled me.  I tried to ask a few more questions, but Josh was done talking.  Josh, like many others with Down syndrome, would have these piercing moments of clarity.  He could articulate bedrock truth and deeply spiritual insights.  And then the window would close and things would go back to normal.

As Nancy and I talked about this, we couldn't shake the feeling that Josh knew exactly what he was talking about.  Then a diagnosis of myleod sarcoma a few months later made it all seem so terribly possible. 

Then came months of surgeries, chemo and radiation therapies.  We had moved his bed downstairs in the dining room because he was too weak to get up the stairs.  Aaron had his bed in there as well so that he could watch over Josh at night.  Josh was 14.

One day Aaron came into the dinning room and found Josh doing some decorating.  Josh loved caps and had dozens of caps for his favorite football and baseball teams.  He had lined them all up.  He told Aaron that he could have his hats when he died.  Aaron told him that wouldn't be for a long time, but Josh corrected him and said it would be when he was 15.  Of course, that turned out to be true.

A few months later, when Josh was stronger, he moved back upstairs with Aaron.  I went into his room to check in.  He was upset and I asked him what was wrong.  He told me that "Dad in Heaven is mad.  He wants me to come home and I don't want to go."

We talked a little.  I came to feel that Josh understood his time was short.  I'm certain that he was communicating with his Heavenly Father and they were talking about him coming home.  Josh knew he would go, but asked for some more time.  I didn't sense any fear, just that he wasn't quite ready to leave us.

We do know that he was looking forward to Heaven.  He told Nancy that God had a blue house with a bowling alley - hard to compete with that.

Not many weeks later, the time came.  Josh's final words were "Go Home Now." 

I am so grateful that Joshua had such a clear understanding of where he was going: Home. 

It gives us so much comfort to know that he knew.  That he was being received with tremendous Love.  That he was going to a place of Peace.  I hope that one day I will know all that as well for myself as Josh did.

The Holidays: After the Death of a Child

This time last year, I wrote these thoughts on what Christmas would be like without Josh and Ben.  It'is a huge question for the newly bereaved.  Anticipation is bad - the reality is just as bad.  But there is still joy to be found.  Here it is:

 

Christmas this year is going to be kinda weird.  Again.  Christmas 2004 was normal.  Our seven children were living at home and gathered round the tree.  All holly berries, sugar plums and Ho Ho Ho.    

 

November of ’05 we were told that Josh, who was then 14, had cancer.  A few days before Christmas, an out of state pathologist finally was able to confirm a diagnosis of his rare cancer.  Christmas was spent in the hospital for his first round of chemotherapy.  The presents and such were postponed for a few days until Josh got home.

 

December 18^th ’06, after 5 rounds of chemo, radiation and months in the hospital, we were told that Josh was clinically in remission.  Christmas that year was at home, a lot sweeter.  We were all still shell shocked, but were feeling a lot better. 

 

January 18^th ’07 we took Josh in to the pediatrician for a sinus infection and learned that he had relapsed.  He died February 3^rd. 

 

Eight weeks later, Benjamin, age 11, was diagnosed with leukemia.  Ben came to us as at 6 six years old from a Korean orphanage.  He arrived in frail health (and Down syndrome and autism).  He simply couldn’t tolerate the chemotherapy and we had to suspend treatment after four months because it was killing him. 

 

Christmas ’07 found us missing Josh.  He also had Down syndrome and had been the center of our family’s world since the day he was born.  Simply crushing.  Little Ben had been so ravaged by the chemo that he was on ridiculously high doses of morphine.  Frankly, if it weren’t for the home movies and pictures, I’m not sure I would remember much of that Christmas.

 

In January ‘08, Ben started having seizures.  The MRI showed that the chemo they had injected into his spinal cord had killed a bunch of white matter in his brain.  His body started shutting down.  He died January 25^th.

 

Christmas this year?  Well, the good news is that we’re finally able to have a few laughs now and then.  Joy has returned – at least sporadically.  But Christmas Present and Christmas Future will always find Tiny Tim’s crutch against our fireplace. 

 

This year as I wander the stores and malls, I look at the other Christmas shoppers.  What’s their story?  What’s going on in their lives?  What needs do they have?  What needs in others are they filling?

 

We’ve certainly been blessed with caring family and friends.  One of those Christmases a whole load of presents showed up from our neighbors.  Another Christmas, the owners and employees of the convenience store where my wife gets her daily Diet Coke showered us gifts.  I was embarrassed at one level because we didn’t have a material need and it all seemed to be too much.  But I am so grateful because it helped fill our need for love and support.  And I know these expressions were a blessing to the givers.

 

We moved a couple weeks after Ben was diagnosed.  Our new neighborhood organized and brought us meals three days a week for six months.  I didn’t even know their names.  My wife’s sisters spent all their vacation time (and money) coming out to help.  Josh’s junior high choir held a fund raiser for him and sang at his funeral.  The list of kindnesses goes on and on.

 

I suppose I was most taken back by the response of the Aftermarket.  I was new in the industry.  Folks learned of our circumstance because I was taking calls and working from the hospital (I lived there 9 months out of 24).  I received thoughtful notes, calls and e-mails.  People I had never met asked for the names of my family members so they could pray for them individually.  I can’t tell you how buoyed up I felt on arriving at the funeral home for the viewings when I saw the flowers from individuals and companies with whom I associate professionally. 

 

Christmas this year?  Well, I guess we have to start making a new “normal”.  Be happy in spite of the painful hole in our hearts.  Be grateful for all we receive.  Be mindful that much of God’s work is done with our hands and look for His children that are in need.

 

Merry Christmas, and a Happy New Year.

What would Josh do?

There they were, 5 very tough looking guys, pants almost falling off, long hair, knit caps - the kind of guys dads keep their eye on.  They were playing video games in the entry at Wal-Mart. 

Nancy and I bumped into some old friends on the way out and stopped to chat. 

Steve and I were keeping watch when Josh just walked up to the guys and said, "Hi, I'm Josh.  What's your name?"  We took a step towards the group, but could sense that there wouldn't be any trouble.

As we visited, we saw the young men start to warm up to Josh.  Pretty soon they were feeding him quarters and cheering him on as he played videos games with them.  Then they moved on to the Crane where you try to grab a stuffed animal.

When it was time to go, they told Josh goodbye.  We were in the parking lot, almost to the car when we heard someone shout "Josh!"  I saw the guys running full tilt towards us.  I thought, "OK, here it goes."  But I was wrong.  One of them had won a stuffed animal on the Crane and they wanted to give it to Josh.

Now, I'm trying to be like Jesus.  I admit to falling far short almost all of the time.  When I saw those guys, I wanted to give them a wide berth and hoped to have no interaction.  I was looking at them through my eyes. 

Josh saw them quite differently.  I couldn't help but think of when Jesus was criticized for mingling with "publicans and sinners". 

What difference did those few minutes with Josh make in the lives of those young men?  What did it feel like for them to selflessly give?  How did they feel as their evening went on?  How long did the feeling last?  Do they still think of it now, as I do, five years later?

Josh was always very attuned to people's feelings.  He could sense hurt, sadness, fear - and he would unhesitantly approach and ask how you were.  And then you would get one of those patented hugs that made everything all better.

Looking back, I feel like I had a "cheat" for 15 years.  Anytime I felt down or troubled in any way, I would get a cuddle from Josh.  Woes just melted away, replaced by warmth and peace. 

It was so easy and so good.  Where can I find that peace?

Of course, we know where we can turn for peace and solace.  It comes from the same source as Josh and is given just as freely. 

Why is that so hard for me to remember?

I'll Fly Away

December 23rd 2001, Nancy was sitting on my lap at the family Christmas program.  My cell phone rang, I stood up and unceremoniously dumped Nancy on the floor. 

She didn't mind too much because she knew it was the call we had been waiting for: time to meet Ben coming from Korea.

We made hasty flight plans for Nancy and I to fly to Seattle on Christmas day to meet Ben the following morning.  Ben's first flight was a long one.  He had been enroute for more than 24 hours and was anxious to get the wiggles out.

A representative of the adoption agency met with us and Ben's escort and we signed the necessary paperwork.  Ben wanted to explore.  He waddled around and rode the escalators with me tagging along after him.  He was unable to run.  Nancy and I remarked at how tiny he was.  At six and a half, he was the age Sadie is now, but he weighed just half of what she does.

We shuttled back to the hotel to get our bags and to return to the airport for an afternoon flight.  Once in the hotel, Ben knocked everything off every horizontal surface in the room.  While we were packing, he went into the bathroom, stuck his head in the toilet and flushed.

This was the beginning of Ben's long fascination with American plumbing.  Ben was a flusher.  Toys, clothes, bottles - you name it.  He would sometimes come home from school with no socks.  When we asked his teacher she said he flushed them.

After the first five or six hundred dollars in plumbing bills, Nancy and I learned how to remove toilets, snake them out from the bottom, replace the $3 wax seal and remount the toilet.  That was a money saver. 

The savings didn't quite make up for the morning when he got up at 5, plugged the toilet with a shampoo bottle cap and flushed repeatedly until 6.  That one cost about $5,000 with water going from the second floor into the main floor, garage and basement. 

On the way home from the airport we thought it would be great to introduce Ben to the Happy Meal.  He loved the fries, but had no idea what to do with an American hamburger.  He finally disassembled it and tore it to pieces and then ate.

In our first few meals after Ben arrived, we couldn't figure out why Ben would try to wrap all of his food in lettuce leaves from the salad.  A short time later we went to a Korean restaurant and got a lesson in Korean dining.  All food is served in bite sized pieces and wrapped in lettuce leaves and then eaten.

Ben must have had to scrap for enough food in the orphanage because he was very protective of his food.  He would sneak food off his neighbors' plates when they weren't looking.  And it was great fun to hide is food and hear him squawk.

It would been Ben's 14th birthday on the 26th.  We celebrated it in the fashion Ben would have liked: Eating!  Those who could make it went to "our" Korean restaurant.  We reminisced about Ben and Josh and told funny stories.

Thinking back on Ben's first flight, lead me to think about his last.  His flight home.  For Ben's funeral, we asked our friends from the Genesis Group choir to sing "I'll Fly Away".  The words seem to echo what we felt Ben's thoughts would be on returning home to his Father in Heaven after his painful battle with cancer.  "Just a few more weary days and then, I'll fly away".

Here is the audio file from the funeral.  Our dear brother James sings the lead.

I'll Fly Away

 

I'll Fly Away- Albert Brumley

Some glad morning when this life is over I'll fly away To that home on God's celestial shore I'll fly away    I'll fly away oh glory    I'll fly away       When I die hallelujah by and by    I'll fly away When the shadows of this life have gone I'll fly away Like a bird from these prison walls I'll fly I'll fly away Just a few more weary days and then I'll fly away To a land where joys will never end I'll fly away

Can You Lose the Battle and Still Win the War

"The worst is behind you." "It's been long enough - you should be better now." "Your burden has been lifted." 

What a load of crap! 

Do I want to sound bitter and cantankerous? No.  Do I want your attention? Yes.

Two of my sons lost their battle with cancer and died.  It's been a while.  It's not all better.  And why should it be?  We rightly describe the cancer experience as a "heroic battle".  Win or lose, it's a battle. 

When our Soldiers come home from war, when the treaty's signed and the Salior kisses the girl in Times Square, is it over?  Is it all better?

Win or lose, those in military service come home with wounds.  Some have a long road to physical recovery - some never will.  Some have seen and done things that forever challenges how they interact with society.  Relationships with spouses have been put on hold and require intense mending.

Children have had to grow up too much without a father or mother present.  Too much time has passed when attention was more urgently required elsewhere.  Yes, the Soldier, Sailor, Airman and Marine come home to a lot of work, rebuilding shattered lives.  When the Battle is over, the War is far from won.

So many people we know assume that putting our children in the ground was the worst thing that happened.   A period of grieving and all will be well. 

Actually, when the shock wears off and you look at what has become of your life while you were in the thick of battle, you realize that the worst may not be over.

There are things in our family life that will take much longer to fix than it took to break them.  Looking at other families that are in the same club, we're not alone in the struggle. 

When you meet someone who has lost a loved one, please realize that the death was not the end of the war.  The battles that continue to be waged will likely be less public, but are no less vigorous. 

Maybe we are not fighting for our lives - but we are definitely in the fight of our life.

When "Simply the Best" is Simply Gone

 

Survivor's Guilt is very common in parent's who've lost a child.  I somehow thought it wouldn't apply to me.  But as with most things related to grieving, I find I'm not exempt.

I'll say unabashedly that Josh was The Best.  He was for me, he was for Nancy, and he was for each of the kids.  I have no illusions that I'm The Best for anyone.  We all concede the point.

Going to the store with Josh was The Best.  Taking a walk with Josh was The Best.  Restaurants with Josh were The Best. 

This isn't some "put the dead child on a pedestal" thing.  I've just gone through hundreds of pictures and you can see it on the faces of everyone who was in a picture with Josh that being with him was The Best.

Nancy and I have been talking in recent weeks about this.  We've wondered why we have yet to find The Best in anything thing else.  Why haven't we become The Best for each other?  Why is it that when any two of us in the family are together, we have to edge around that big, empty hole where The Best would have been?

Maybe this is our survivor's guilt.  Maybe if anything else were to be, even for a moment, The Best, we would be dishonoring Josh's memory.  Maybe we're afraid that nothing can ever again be The Best, so we don't dare to try.

I noted recently that I haven't watched a BYU football game since Josh died.  Now, I'm not a big sports fan, but, you guessed it, watching a game with Josh was The Best. 

Maybe next weekend, I'll give it a try.