The Bizarre Blessing

by Troy Foster

We were talking on the phone – both headed home from work (which seems to be good, quiet, quality time together) – when we realized it.  Our words were horrifying.  Things that you shouldn’t hear parents say about their child.  And we were saying those things, and not bothered – in fact, encouraged by our talk.  We were reminded that we are living in a bizarro world of sorts with perspectives that have changed forever.  Nothing that we wanted, but a blessing that we appreciate.

“Henry told the nurse that he couldn’t walk.  He was too tired,” Kristen reported.

“Well, good news – the insurance company called about the wheelchair and it’s been ordered – so, Henry will be happy,” I replied.

“Perfect!  I’m glad that he will tell us when he needs something, and he is excited about the wheelchair,” Kristen continued.

I agreed.  And then realized how odd the conversation would appear to an outsider.  Parents pleased that their 5 year-old would talk to them about his weakness, that his energy deteriorated to the point of needing a wheelchair, and celebrating its arrival. 

But, that’s where we are.  And it’s okay.  Mainly because Henry is okay with it.  In our world, as bizarre as it might seem, Henry helps us focus on the fun he’ll have on the ride there and at the destination (especially when it’s the playground or soccer field).  We have learned that worrying about how he gets there – by foot or by chair – is a waste of precious time.  Time that Henry has taught us to laugh with, smile at, and experience each other.

We may be on a bizarre journey, but know that we are blessed each step of the way (or turn of the wheel).

For more inspirational stories about Henry, read Three Candles (www.threecandlesbook.com) – a book that captures the gift of his perspective.  Proceeds of book sales go to Henry's Hope (www.henryshope.org).

Good Times - Really!

by Troy Foster

I’m not even joking.  You’ll think I’m crazy or pulling your leg after you hear about our last few days, but I mean it with all sincerity.

Today and The Day Before

I almost forgot the constant whirring noises of the machines, the bright lights, the doors constantly opening and shutting, and the parade of people coming in and out – just when things get quiet.  But, as I sit here, the familiar sounds of the IVs, heart monitors, and sites of the blinding lights and nurses and doctors asking the same questions as those before them – harken me back to when Kristen and I regularly lived in hospitals.  Today, it’s not Henry, but our little Eli that is sick.  He’s dehydrated, has some stomach things, and is in for observation, tests, and fluids.  Poor little man is sick, but he’s going to be fine soon; I just know it.

We also had a little scare with Eli's Crankaw yesterday.  He was in a car accident that could have been so much worse than it was.  The car wishes that it looks as good as Crankaw.

Last Weekend

Every single member of our family, save me, has been sick with a stomach flu off and on for the last week.  Poor Kristen was hit hard.  So there has been some form of clean up underway at our house at a near constant pace.  Oh, and just in time for our new carpet – that we got a few weeks ago.

Our poor dog, Atticus, has a seizure disorder and that flared up too.  So we have him drugged up pretty good on Valium and Phenobarbital.

The Boys’ Check Ups

Henry and Luke have recently been to the cardiologist and neurologist.  Not terrific news.  Henry’s muscle weakness has gotten more pronounced, and they think that Luke might have an arrhythmia.  Neither of those are critical, but just steps in a direction that we’d rather not take.

So What’s Good?

Now, I’m not going to say that any of this was exciting or something that I hoped would happen.  And, I would probably forgive myself (and that’s saying a lot) for being a bit down, if I was.  But, I’m not.

Maybe I’m crazy, and if that’s what it is, I’ll take it.  However, I like to think that I was open to seeing, and enjoying, the good:

·               Henry, Luke, and I made adventures out of our trips to Cincinnati.  There were secret spies, special lunches, sing-a-longs, and a detour home for a book signing.  The doctors visits happened, and the news is not lost on us.  But, what we all remember is how much fun we had.

·               We’re getting ready for Henry’s Wish trip to DisneyWorld – in between the cleaning.  And when Henry and I went to go get our haircut yesterday, Wendy (a good friend and owner of the shop) said “Keep your money for DisneyWorld.  Let me treat you to something.”  Henry said what I was thinking: “Wow, thank you!”  That was so unexpected, unnecessary, and kind.

·               The way he runs around, you would have no idea that Atticus is having health issues.  He’s enjoying life even though he has some hurdles right now.

·               Even now, as little Eli rests with the medicine and fluid doing its work, I sit here thinking about him, what a hoot he is, what fun he’ll have in DisneyWorld, and even the future.  He’s been cuddly because he’s sick, and extra sweet.  Not things that I would have experienced if things went as I planned today.

·               A good friend of ours is picking up our kids at school, their kids will have fun with ours, and help us out a bit.  People are great.  And it just made me think that we need to get those kids together more often when there isn’t a need.  They are close and no reason not to nurture that.

       My father-in-law, who means the world to so many - is back to doing his paperwork today.  I was so happy to hear that this morning.

 

So, good things are all around.  Sometimes, it seems, we just have to be mindful of them and search a bit harder than other times.  It reminds me of a verse from the Bible that I just read coincidentally – that discussed how we have the choice each day to “choose life” and enjoy it for what it is – that day.  Without worry about the future, dwelling on the past – but enjoyment of today.  Deuteronomy 30:19.

So today – a hard day in a string of challenging ones – I choose life.  And I choose to look at the good, and enjoy what I have today.  I hope that I have the strength to keep making that choice each day.  And remember to do it on the good days too!  If I just take a cue from this kid (pictured below), who could easily choose to be mad, sad, or angry.  But he just keeps on enjoying the good times.

“I Just Want to See a Smile on Their Faces!”

by Troy Foster

That’s what Henry told us earlier today.  He was all revved up about Valentine’s Day.  And not for the same reason that our other kids are.  He can’t eat at the school parties or lick the lollipops that now seem to go with the holiday cards.  But he’s excited about other things.

Tonight, he was just thrilled to deliver the cards that he wrote out for his friends, Ty, Chad, and Bailey – the kids’ babysitter and her brothers that have become close friends with all of our children.  A terrific family. 

As we were taking the short drive from our neighborhood to theirs, he said “Daddy, go faster.  The faster we get there, the sooner they will be happy.” 

Kristen and I laughed, but Henry persisted.  “I just want to see a smile on their faces.  It will make me happy.”  It was as simple as that. The innocent, raw, and plain truth. 

We were bummed that they weren’t home, but they stopped by later on.  (Like I said, awesome family.)  Henry got what he wanted.  They smiled, and so did he.  And laughed until we tore them apart; it would still be going on now if adults weren’t involved.

This made Henry’s Valentine’s Day.  So refreshing.  And intriguing.  I think most of us were like Henry at that age.  Easily pleased.  Ecstatic when we see those that we care about smiling and happy.  The most satisfying feeling.

At some point, that changes.  Expectations, demands, motivations.  Distractions get in the way, and cloud things a bit.

But I was humbled today, like many days, in seeing through Henry what, in the end, is important.  Just seeing the smile on the faces of those that we love.

For more inspiring stories about Henry, and the perspective he teaches, check out the book about him (Three Candles) at www.threecandlesbook.com.  It’s gotten all 5-Star reviews by Amazon Top Reviewers, and a portion of the proceeds help kids in need of medical treatment.

Body Fluids - Whatever

By Troy Foster

This week, I saw a guy (30-year old or so) freak out because some kid sneezed and snot flew out of his nose.  Now, the guy - obviously not a father - was far away and just reacting in disgust to the fluids flowing from this kid's nose.

I used to be like that.  Grossed out by random body fluids.  Even the term is disgusting.  Now, we have four kids.  And I stay at home with them part-time.  Perspectives change.  I probably have a combination of snot, poop, pee, blood, vomit, bile, and saliva on this “clean” shirt that I just put on this morning. The beauty, however, is that if I spill anything on it – ever – (and I do mean anything) - I have four excuses.  CSI would have a field day with my clothes.

Before we had kids, I gave mouth-to-mouth resuscitation to an old dude that had a heart attack.  And, he threw up in my mouth.  (I cursed myself for taking that class for years.)  Of course, I did the right thing.  Spit out the throw up and kept going.  He died.  So, it was sad.  But, I was also disgusted that a stranger threw up in my mouth for nothing.

Now, that wouldn’t even phase me.  If anyone is going to have a heart attack, having it around me is the best bet, as I’ll have no hesitation about the mouth-to-mouth.  Can’t guarantee results though!


Next time, I plan to talk about the best way to get your kids thru a transcontinental flight without a peep.

Ohio, O-Bye-O, O-Bio

By Troy Foster                               

We sit in our Cincinnati, Ohio hotel room tonight, and I have to say that I’ve never really disliked a State so much.  In fact, being a pretty patriotic guy and having been to a bunch of them, I don’t think I’ve ever really disliked a whole State.  Now, I do.  Congratulations Ohio – for taking that prize.  Of course, I’m being irrational, projecting, and will soon forgive the Buckeye State.  For now though, I think even natives will understand my current state on the State.

Last summer, our son (Henry) was diagnosed with mitochondrial disease.  The type that he has is degenerative and progressive, no cure, not good on the medical side of things.  His neurologist’s nurse called us to tell us the news – as we were driving through Ohio on our way to Virginia for a vacation.  She explained that his biopsy showed the deficiency.  Why, why – Ohio?

Ok, forgive and forget?  Not exactly forget – because I have remembered, but that passed and my relationship with Ohio greatly improved since last year.  Ironically, Henry’s specialist is in Cincinnati – so we make frequent trips, and have grown to like to like the place – despite the reason for us being here.  The kids (Henry especially) love the special time with mom and dad, and staying in a hotel – any hotel – is magical.  As an aside, I love that purity.  In all honesty, it doesn’t matter one bit to the kids whether the hotel is dirty, in the worst neighborhood, or has no amenities.  It’s an adventure of equal magnitude – no matter what.  So having that with Henry (and the other kids) has made us laugh and smile a lot here in Cincinnati.

But today was the day that broke the camel’s back.  We’re here with Henry for a few days for several appointments.  And, we decided to “check in” with the neurologist’s office to see if test results for Luke, our oldest, had come back.  You see, having gone through what we did with Henry, we thought that we “saw things” with Luke.  “Things” that wouldn’t have meant much had Henry not been diagnosed with the disease.  We took Luke to Henry’s neurologist to rule out the disease, and tell us how silly we were.  He didn’t.  After a brief examination and some blood work, he scheduled Luke for a muscle biopsy to determine whether he had the disease.  (If the consequences weren’t so serious, I’d almost be proud of Kristen and my diagnostic abilities.)

When we checked in, the nurse called me back.  Same nurse that talked to us about Henry – her name is Shirley.  She is very kind, and thankfully, has a calming influence.  But her news was not good.  She told me that the results had come back, and that Luke had the same disease and severe deficiency that Henry has.  After she decided that I understood, she began her discussion about hope, medical advances, and how each patient reacts differently.  And then started to tell me about the clinical studies that they would enroll Luke in.  At that point, I think that I stopped listening.  Hope, clinical studies, medical advances – though her delivery was fantastic – those terms hit with a ton of bricks.  This is our oldest son – the kid that seemed asymptomatic.  The one that they were suppose to rule out. 

Just like any other parent would be, we are devastated by the news.  It is hard to process.  Much easier to blame a State than take in the reality.  But we are in a different place than we were when we got the news about Henry.  He has taught us – all of the kids have really – that living life to the fullest – each and every day – is far more important than anything else.  It’s the little things.  Like the kids loving hotels.  And loving to pretend to be spies.  So we took off for an overnight out of town, pretended we were spies (friend kind), and stayed the night in a hotel. 

Or other little things.  Like kissing each other through the window on the way out the door.  Giving Henry a “wild jump,” letting Luke crawl in bed with us in the middle of the night, and planning our next vacation.  Or letting Lily and Henry cuss in the car during “cuss time” (Lily really loves this).  Or taking the kids on dates, and going to every single event the kids have.  Or speeding over the railroad tracks so that the kids’ stomachs drop as they scream with excitement.  And the things go on and on – buried throughout the minutia of each and every day.

Things that might seem little, but aren’t.  Things that might seem irresponsible – or poor timing – but, on balance, it doesn’t matter.  Things that you maybe “shouldn’t” do – but the shouldn’ts and shoulds changed for us.  (I often wonder if they might be misguided anyway.)  Whenever I wonder whether we should be more traditional, more responsible, more – you fill in the blank . . . I just look at our kids.  Their smiles, the sparkle in their eyes, and the utter happiness that they experience in the littlest things tells me that I wouldn’t change a thing.  What’s especially amazing to me is that Henry, and Luke as of late, are often sick, tired, and have reasons to complain.  They don’t.  Instead, they sincerely and genuinely enjoy the present and look forward.  A perspective that I wish that I had long ago adopted.  They are real old souls.  (Now, mind you, we also have gone to great lengths to have normalcy.  They are disciplined.  They have chores.  And there are no excuses for bad manners or bad behavior.  They are well behaved.)

So we are in a different place this year than we were last with this news.  Actually, we’re in the same State – Ohio – which is what this post started with.  But, we are in a different state in the same State, if you will.  Though incredibly sad and heart-wrenching to have two kids with this disease, we will not dwell on the disease, the symptoms, or the potential outcome.  We can’t.   Our boys won’t let us – even if we wanted to.  Making every moment count, and creating memories now is our focus.  After all, it is the little things.

So, instead of thinking about how incredibly sad that I am that Luke and Henry – my precious boys – have a rare disease and will not have enough energy to complete basic functions at various points – I choose to hate Ohio.  For now.  That’s just until we think of our next adventure with the kids – whether it’s making special cookies for the neighbors or making a craft with toilet paper rolls.  Or watching the fire bugs light up in the back yard.  Who knows, maybe it will even be passing through (or coming to) Ohio on our next big adventure.