Chromosomes, Cancer & Kids

I Want to Be a Dad

When Josh's cancer was in remission, he had gone up to his room to rest one evening.  I popped in to check on him.  He was laying on his side, looking at a small picture of his sweetheart on his nightstand. 

He looked very melancholy and I asked what was the matter.  He said, "I want to be a Dad."

Josh felt strongly that he would die soon, so he knew he wouldn't have the opportunity to be a dad.  And he was mourning that. 

Josh loved babies and little children.  Kids would just swarm him and they would tickle and giggle. 

He always wanted to hold babies.  Most moms were at first reluctant to had over their precious newborn to a kid with Down syndrome, but it it only took a moment to see how gentle and tender Josh was with their child and a moment more to see how their baby responded to Josh.  There was a special connection that brought tears to the eye.

Josh didn't know that men with Down syndrome are rarely able to father a child or that he would not be able to physically provide for a family.  Josh did have all of the love, patience, care and hope required to be a good father.  Qualities that many of us who are fertile and have jobs may not have in such abundance.

Josh was very keyed in on fatherhood.  I remember when he first understood the concept.  He would often say, "You're the Dad.  I'm the son."  I wish I could here him say that again - it came out very softly as "shhhun".  When he wasn't getting what he wanted from me, he would reverse things and say, "I'm the Dad you're the Son" as if that would settle the matter in his favor.

As with most teens, there were all the variations of "Dad" from the enthusiastic "Daddy!" when I came home to the exasperated "Dad" when I did something embarrassing at the store. 

So I look back at what kind of dad I am.  I'm so proud of all my kids.  I know in many ways I fall short of being the kind of dad I should be.  So in this life, I got to be a dad when Josh couldn't.  But I'll take to heart what a privilege it is to be a Dad and try to, once again, be more like Josh.

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

You Can Go Back Home

Early on the morning of July 22, 2003 I woke to a phone call.  The man said that my family had been in a rollover accident near Kearney, Nebraska.  He said that one of my boys had been thrown from the car and "didn't make it." 

I immediately thought it might be Josh and asked him if it was an 11-year old with Down syndrome.  He said yes.

He called back several minutes later and said that as the paramedics were working on Josh, he suddenly sat up and "darned if he didn't look half pissed about it."

The story of the accident - and the miracles surrounding it - will have to wait for another post.  Here I want to talk about Josh's experience.  He told us about what happened to him, using his usual combination of words and sign language.  First he told us of angels in white that flew him out of the window of the Suburban and laid him on the ground.

He said that he went to a place that was all white and that he saw his "Dad in Heaven".  Josh said that he wanted to stay, but his Dad told he had to go back, that his mom and family needed him.  I don't know what you think about accounts of near death experiences, but I can tell you that this 11-year old with Down syndrome hadn't been unduly influenced by media reports.

I was thinking the other day about how when Josh relapsed and knew he was going to die that he wasn't afraid.  Not one bit.  He even seemed to be looking forward to it.  I was thinking that I don't want to die - just not ready.  But Josh was.

Of course, Josh was as sweet and pure and anyone I've ever known.  And he didn't have any of the regrets that most of us carry with us.  But I think Josh's experience nearly four years before had prepared him.  I think he remembered how he felt when he had his visit with his Dad in Heaven.  I think he knew how absolutely wonderful it would be to once again be bathed in his Father's love.

Good to go home.

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

Mustard Days

We spent several days last week as house guests of some dear friends and their 11 children.  Actually they have 13 children - but the oldest 2 don't live at home. 

Theirs is a fascinating story, and it's theirs to tell, but I will say that we particularly enjoyed our time with their son and daughter with Down syndrome.

We smiled till our faces hurt and cried our eyes out.  It was so sweet to be so close once again to "Downsies": their native joy and enthusiasm, that intractable stubbornness and the endless love. 

And a poignant reminder of what is missing from our lives now.

As you can imagine, a family of that size which includes children with special needs, requires everyone to pitch in.  I was reminded of the tender care our children offered Josh and Ben. 

My thoughts turn especially to Josh and Aaron's relationship.  Of course, each of the children had a remarkable relationship with their brothers, but I see Aaron every day and think of how the boys' deaths affect him.

Aaron was born just 18 months after Josh.  I feel strongly that Aaron promised to join Josh as soon as he could to be his companion and protector. 

It wasn't too long before Aaron caught up with Josh's developmental age and it was like having twins in the house.  Most parents of twins can attest that when they're toddlers, you might as well divide their IQ in half when they're together, such is the trouble they can create. 

One morning we woke up to two boys covered in eggs.  They had been throwing them down the basement stairs and around the kitchen.  This was when we were buying eggs in 60 count cartons from Costco.

Big mess.  Aaron said it was Josh's fault and Josh said it was Aaron's.  Another morning the entire refrigerator was emptied out - including the shelves.  Sauerkraut and pickles all over the place, a gallon of milk - everything.

Another day all the condiments went missing.  No one knew where they were.  Finally we noticed a trail of mustard leading to a strong odor coming from a hutch in the dinning room.  There was a bowl containing all of the ketchup, mayo, Worcestershire and mustard in the house. 

We dubbed these the Mustard Days.

Josh was very speech delayed.  Aaron developed a grunt language that they used to communicate.  Josh would grunt and Aaron would interpret for us.  Once I came upon them in the hallway.  Aaron was reading Josh a book in grunt-speak.  They also used their language to get their stories straight from time to time.

Aaron had outside interests and friends, but whenever Josh wanted to join him he was welcome.  If someone suggested that Josh not be allowed to play with them, Aaron always chose Josh and left. 

Aaron was always proud of Josh's achievements.  I know it's hard for any kid with a sibling with special needs.  There is much sacrifice of attention and resources.  But any private resentments that Aaron or the other kids had were never expressed.

I can't describe the level of medical care Aaron provided to both Josh and Ben.  He learned how to program IV infusion pumps, keep a med schedule and provided much needed relief for parents.  All the time, doing everything he could to cheer and support his brothers through their cancer treatments.

As much as I hope I am a good Dad, I know that Josh's life would have been greatly diminished without his brother Aaron. 

At Josh's viewing, Aaron never left the head of the casket.  He remained the Lion at the Gate through the last hour. 

Now, I know that Josh is taking his turn watching over Aaron in ways he wasn't able to do when he was alive.

Here's to brothers and Mustard Days.

Big Wheel Keep on Turnin'

If you know kids with Down syndrome, you know they love to roam.  Introduce wheels into the mix and they can get away faster and roll farther than you can imagine.

I wrote about how great an escape artist Josh was in If Houdini had Down syndrome, so I'll focus more on the chase.  The first kiddie cars and skates all start out innocent enough, but then comes the Big Wheel.  They're fast.

One morning my wife got a call from a neighbor saying that a man in a robe - flapping enough to reveal his underwear - was chasing Josh done the street on his big wheel.  She looked down the street and assured him that it was me.

Next came the two-wheeler with training wheels.  Training wheels slow you down quite a bit - but not enough, so I let the air out of the tires.  My hope was that Josh would get tired before getting very far.

Once we went searching for him and our circle kept getting wider.  I finally found him about half a mile away down a private drive on a cul de sac.  He was joining someone's family party.  Of course, he was in his underwear.

Jon, Josh, Aaron and I went up the canyon for a father and sons activity with our church.  After breakfast, Jon and Aaron went to play with their friends so I was on Josh duty.  One of the families had brought their bikes.  Josh found one his size and determined that he would learn how to ride it.

I didn't know any kids with Downs that could ride a two wheeler so I wasn't too worried.  But he kept at it for the better part of three hours.  He started at the top of a gentle grassy slope and rode down.  At first he would fall after a few feet.  Back to the top and try again.

Finally he got to where he could coast all the way to the meadow.  Then he started pedaling.  More trips up the hill and at last, he was riding on his own.  Imagine Nancy's astonishment when we got home and I took the training wheels off and he demonstrated is new skill.

Now the protocol when Josh went missing was to check for the bike first so we could gauge the search perimeter. 

Once we found him riding back from the neighborhood market about a mile away.  He had a shopping bag hanging from the handle bars with a Mountain Dew and a box of sandwich bags - he knew we were out.

We went to the store to make sure he had paid.  He did.  He also wanted a DVD but didn't have enough money so they just sold him the other items.

One of the more scary times came after our family got some scooters.  I found Josh coming back from a convenience store.  Problem was that it was across a four lane state highway.  Backtracking we found that Josh had paid for his cherry Slurpee and Three Musketeers bar - but was a dime short and asked the guy behind him in line to cover the difference. 

Someone said they helped him back across the highway.  I thanked them and we went back with a picture and our phone number to request a call if it ever happened again.

For the next several years, whenever we went down that street, Josh would remind us of where I found him - and also where he peed in the vacant lot on the way to the store.

Once he managed to get into a neighbor's garage and start up their electric scooter.  Short ride before the crash.

One morning Josh was missing.  I was putting on my shoes on the couch to start looking and saw the Suburban rolling out into the street.  I hustled out an found Josh behind the wheel. 

I gave him the sign for cut the engine.  He put it in park, shut off the ignition and climbed out with his briefcase.  He had made himself a lunch and was going to work.

I was really proud of him.  And impressed - until I saw the garage door.  Apparently it took two tries to find reverse.

There are plenty more stories, but you get the picture.  My favorite though is one we just recently heard.  When Nancy was working at the hospital supporting new parents of kids with disabilities, she showed one mother of a newborn boy with Down syndrome a picture of Josh on his bike.

For some reason, that picture gave that mother more hope for her son's future than anything she had read or been told.  She's since written a brochure that is being used nationally to support families that find themselves in the position she was in a decade ago.

Way to go Josh!

Free At Last!

Today Josh would have been 18. 

For most teenagers, that milestone signifies freedom.  They can enter into contracts, they can vote, they can leave home and their parents can't make them come back. 

Even if it's just symbolic, turning 18 really is something.

Josh's 18th birthday was one Nancy and I have planned for for many years.  Because Josh had Down syndrome and wouldn't be mentally competent to care for himself, if nothing was done, he would become a ward of the state.  So we would have to apply for legal guardianship in order to continue to direct decisions for his care.

Now instead, this 18th birthday finds Josh with a freedom we never would have thought he would enjoy.  When Josh was little, I'd ask him what he wanted to be when he grew up.  He's answer "Police" or "Basketball".  Pretty much what you'd expect from a boy. 

One day I came home from work.  I went into my closet to change and saw my navy blue suit on the floor.  I went to hang it up and was surprised to see that the legs had been cut off the pants below the knee.

I went into Josh's room and found the missing legs under his bed.  When I talked with him about it, he said he wanted to be one of the Men In Black.  I guess the uniform needed to be tailored.

Of course, Josh couldn't grow up to be a policeman or pro ball player.  But he could dream just like everyone else.  In his mind, there were no limits.  He persisted until he could ride a bike.  He worked until he could swim like a fish.  He would shoot baskets for hours until he actually won a prize in a free throw contest.

Josh thought he was as free as could be.  Now, he truly is.  I can only imagine what he's doing.  What can he do with his tremendous gentle love without the barriers imposed by Down syndrome?

Free At Last!

 

Two weeks before Josh died, his aunt Kim, took us up the canyon for family pictures.  In this sequence, Kim asked Josh "What would you like to tell your Mommy?"  Watch the pictures as he tells Nancy first, how much he loves her.  Then that he's going to his Dad in Heaven.  And finally that she'll be OK.

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