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

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!

Out of the Club

I've often thought that extra 21st chromosome in people with Down syndrome must be full of music.  (I suspect it itches too, especially in the sit-upon region).  Song and joyful dance comes so naturally.

The other day, PALS was the opening act for a concert in the park.  PALS is a group of youth and young adults with Down syndrome who perform dance numbers a half dozen times a year. 

Nancy, Aaron, Sadie and I went.  We saw some old friends - ours and Josh's.  One of the performers is Robbie who started school with Josh when they were about a year old.

It brought back a string of memories.  Most states have early intervention programs for kids with developmental delays. 

The programs go from birth to three years old.  Then on to special needs pre-school until age five and then into kindergarten and beyond.

Here's a picture of Josh in early intervention.  He was learning how to rock, then crawl, then stand.  These are things that "normal" kids just pick up, but have to be specifically taught to kids with mental disabilities.

As family members, we were taught the building blocks of speech and how to reinforce them.  We learned sign language as that comes easier than speech to most developmentally delayed kids.

Josh always loved school.  Here he is at pre-school.  He had lots of friends.  I remember one elementary school teacher telling Nancy and I how cool Josh was. 

Once we were meeting with the vice principal of the junior high (who is also a police officer) and we expressed concern that Josh might be mistreated by other students.  He said, "If someone ever did, it would only last a second - the rest of the kids would take 'em apart."  In 15 years of school, Josh have very few negative incidents.

Wherever we went, we ran into kids who would yell, "Hi, Josh!"  We've been surprised and touched by the people we find visiting Josh and Ben's graves, kids and their parents that we never knew who were touched by their giant spirits.

Ben went to a special needs school.  He didn't have the mental capacity to be mainstreamed.  A visit to Ben's school was at once humbling and uplifting. 

For 16 years, we were members of a sacred community.  Experiences and people that were uncomfortable at first, became common, but always cherished.  Kids that love everyone, and parents that help and support. 

For me and Nancy, one of the greatest losses that accompanied the boys' deaths was no longer being in the Club. 

We know that we're welcome to visit anytime, but it really isn't the same.  I guess membership really does have its privileges.

Some more musical photos:

Here's Josh in his Backstreet Boys phase, giving a concert in the family room. 

He would invite people up from the "audience" to be serenaded.

This is Ben and an aide at his annual school dance.  Ben is in the center - green shirt.

Josh unplugged.

Josh rockin' the crowd at a Courage Reigns party.

Pictures of Josh

When we realized Josh had a very short time, I started working on a slideshow to play at his viewing. 

Brandon Storrs, a co-worker, surprised us with a beautiful video tribute that we used instead.

I thought it would be nice to post the slideshow of some of our best memories of Josh.  You'll see how happy he made us.

Download Life & Times of Josh Boldt

Truth on a Refrigerator Magnet

There are a lot of magnets on our refrigerator.  I honestly don't where they come from, but there they are. 

"Life is not a matter of milestones, but of moments" reads one that struck me today.  When Josh was born with Down syndrome, we were told not to worry about the usual milestones but to just take him home and love him.

And we did.  Those milestones that every parent looks for were greatly delayed and hard won.  Some never came.  The hopes and dreams parents have for their unborn child had to be changed.  New destinations, new paths, new successes. 

But there were the moments.  Moments to fill you and hold onto forever.

I've been thinking a lot about milestones.  Our Natalie is getting married next week - that's a big one.  Natalie and Nate's union will not only get the blessing of the state, but for us and them, it will have special religious significance as well.  We believe that family can extend beyond our days on earth. 

That belief guides our behavior as we do all we can to build a love that can carry into the eternities.  The wedding ceremony is an important symbol of God's promise that he will bind our hearts together forever if we honor our commitments.

Josh and Ben missed out on a lot of milestones - some because they had Down syndrome and others because they died so young (ages 15 & 12).  Not just developmental milestones, but milestones that are important in our religious beliefs.

We believe in baptism at an age when a child has a sense of right and wrong and can be accountable.  Josh was a high-functioning child and was baptized at age eight and took on responsibilities in our lay ministry at age 12.  Ben, on the other hand, had a developmental age of 18 months or so.  During his life, he remained unbaptized in his innocence.

It's our belief that baptism and other ordinances can be bestowed posthumously.  So this week, Aaron will serve as proxy for his brother Ben's baptism.  My son Jon & I will serve as proxy for Josh and Ben in other ordinances they were not able to do themselves while they were alive.

Life is not a matter of milestones, but of moments.  These are sweet moments indeed.

 
Aaron, Jon, Josh & Ben at Jon's wedding reception, 2005

If Houdini had Down syndrome

Any parent of a child with Down syndrome will tell you they are great escape artists.  First off, they have low muscle tone which allows them to be extremely flexible.  Think of a cat squeezing through an oh-so-small gap in the fence. 

Combine that with a very healthy dose of curiosity, dogged stubbornness and no sense of boundaries (why can't I visit the neighbor lady while she's in the shower) and you are going to spend a big part of your life looking for your kid.

One's first impulse is containment.  We started with the child's car seat.  Hey, it's not only smart, it's the law.  But more often than not, a glance in the rear view mirror revealed an empty car seat.  Somehow, Josh was able to work his legs up beside his head and climb out over the straps.

Escaping from the house started to become a problem.  Josh was able to defeat every door childproofing device known to man.  Even latches high up on the door (that's what they make broom handles for).  We finally ordered a security system.  We figured that if we couldn't keep the doors and windows secure, we could at least make it so that they would chime when opened - cutting down on his head start really helped.

One morning shortly after six, we were awakened by a knock at the front door.  Jon turned off the alarm and opened the door to a nice older couple.  Josh stepped in, wearing nothing but a diaper (about 5 years old).  They had found him a few blocks away and offered to help.  He was not very verbal yet and couldn't tell them where he lived.  They cleverly offered to race him home and he led them to our door.

We were puzzled as to how he got out with the alarm set.  Then I saw a small pane of glass lying on the grass.  We had two very little ventilation windows - less than a foot square.  Josh had found a way to remove the window, threw it out onto the lawn, squeezed out and went on walkabout. 

For a while the backyard was secure.  6 foot high chain link fences generally keep little kids put.  Then Josh started climbing the fence - no fear. 

Well - almost no fear.  Kids with mental disabilities often have a condition known as pervasive tactile deficit response (PTDR) - a fancy way of saying that they get totally creeped out by being touched lightly or by things like feathers, lint, string, etc. 

Jon was on guard duty one day when Josh kept climbing the fence.  Jon found some of that fake Halloween spider web stuff.  He strung it along the top of the fence.  Josh wouldn't go near it.

Of course, with therapy, Josh eventually overcame PTDR and we lost the ability to contain him with spider webs.  Oh, the places he went and the things he did. 

We'll leave that for another post.

Dad! She's HOT!

When Josh's first nurse in the oncology unit left his room, he looked at me and said, "Dad!  She's HOT!" 

The unit has a plentiful supply of pretty nurses, techs and doctors.  Josh often would tell us just how pretty he thought they were.  He developed a reputation as quite a flirt.  I think it was in his file as more than one new doctor commented on his rep during an initial interview. 

I tell you this to illustrate that, though he had Down syndrome, he was still a red-blooded 14 year old boy.

Let's come back to that in a minute. 

Once I overhead a conversation between two business associates.  One had a convergence of two serious illness, one of which involved surgery, and an injury, which also required surgery.  He was quite incapacitated for a time and needed assistance for with his bodily functions.  He remarked, "It was the most humiliating experience of my life."

I know I would have felt the same way.

One of the side effects of chemotherapy is diarrhea.  Copious diarrhea.  When we would make Josh's hospital bed we would put on three or four layers of sheets, chucks pads and bath sheets.  This way we could clean him up and remove the soiled layer without having to get him out of bed every time.  We could easily go through a dozen or more layers a day.  Double adult diapers were involved as well

Often assisting his mother and I in cleaning Josh up were the 'hot" young ladies that had grown to love him.  We could see that he was uncomfortable with the circumstance.  But every time - every time - Josh would thank them.

Josh accepted the service with grace and humility and gratitude. 

Humility or humiliation.  I guess the choice is ours.