“Daddy, Can I Have a Wheelchair?”

By Troy Foster

I held little Henry in my arms, his head resting on my shoulder, and his arms wrapped around my neck – when he asked me.  We were almost halfway to the car, both exhausted, sweating profusely, and the “dry heat” proving to be less so than one would hope.  He titled his head, moved his mouth toward my ear, and whispered “Daddy, can I have a wheelchair?”

It shouldn’t have broken my heart, but it did.  It wasn’t as if I hadn’t been prepared.  Just days earlier, Kristen told me that he had asked for a fancy walker or wheelchair so that he wouldn’t get tired so fast.  He didn’t want the long walk from the parking lot of the school to his classroom to tire him out before the bell rang. 

But, I had dismissed the idea then.  I remember saying to my wife, whom I know had just as much trouble saying it to me as I did hearing it, “Well, he doesn’t have to.  We don’t want to push that.  We have to try not to make him any more different.”  The look on her face said it all, and I knew before the words left my insensitive mouth – of course, we didn’t want to push it.  We weren’t.  He was asking, and we couldn’t ignore him.  We couldn’t ignore the reality.  Henry is different.

As these thoughts rushed through my head, Henry grew heavier and I remembered when Kristen and I wished – desperately – that Henry would live long enough to grow so heavy.  Grow to need a wheelchair.  And here we were.

Still not wanting to give in, I asked: “Why do you want it, Henry?  Why not let your teacher pull you in the wagon?”  Not that it mattered, but I guess riding in a wagon felt more “normal” to me.  Henry quietly shared, “Because I want to do it myself.  By myself.”

Of course he did.  His answer made me smile – as I simultaneously held back tears.  Henry wants to play with his friends, learn in his class, and use his energy that way.  He doesn’t want to waste it on getting there.  He just wants to do what other kids his age do – but will have to get there with a little help.  Rest assured, he’ll do it himself though.

It was a busy week.  Sure, we did stuff.  We quickly got the doctor’s order for the wheelchair, discovered the best place for Henry’s needs, and are researching brands, while letting him look at colors and designs. 

The emotional toll was noticeable too.  Henry continues to amaze me; his spirit, his attitude, and his will.  I realized as well that dealing with what might or will happen – is much different when it actually happens.  Though we’ve gone over it in our heads, when it happens, it still burns.  Hurts.  Devastates.

But, I know that the look on his face when he gets his wheelchair and the pride I’ll feel when he’s getting around by himself – will be equally strong on the other end of the spectrum. 

I’m always reminded that we’re truly blessed.  And we’ll take this journey one step at a time – together.  That’s all that matters.

For more stories about Henry, Henry’s Hope (www.henryshope.org), and the special children we encounter, check out Three Candles.  It’s available directly on www.threecandlesbook.com and via Amazon.

The Beverly Hillbillies Meets Gilligan’s Island – Foster Style

By Troy Foster

This Father’s Day is different than any other for me.  I’m not spending it with Kristen and the kids.  Instead, I’m all the way across the country – getting our new home ready for their arrival!  That’s right, the Foster clan is going back to Arizona – Scottsdale, that is.  A lot has happened since my last update.  So, having a little spare time while missing my family on this Father’s Day, sit right back and you’ll hear our tale.  A tale of a fateful trip.” 

The Perfect Storm

I haven’t written for some time.  Not that you would have or should have noticed, but selfishly, my blog serves not only as a way to update and share our journey, but is primarily therapeutic for me.  For the last few months, however, our ship has been a bit lost at sea.  Some of those things, I’ve had no desire to write about or even share.  But, our close friends and family have been so amazingly supportive, and if you’re reading this – you’re one of those people – that I thought it was about time to tell you what has happened – and in a relatively short time.

Nothing.  And at the same time, so much.  It’s a lot like these old TV shows.  When Jed was going out shooting that morning, he had no idea that he’d be packing up and heading to Beverly in short order.  Neither did the tour boat of strangers think that they would be close friends – almost like family – when they stepped on board that ship.  I’m not suggesting that we have struck it rich (we haven’t) – nor am I saying that our journey stranded us on a deserted island.  Far from it.  But, we have been lost at sea; we have met and befriended amazing people on our journey; and we are heading out west – “the place we ought to be.”

Travels Well Worth Taking

It’s hard to believe that we moved out to Indiana almost three years ago.  At the time, we had struggled with Henry’s illness, still didn’t have a definitive diagnosis, and were certain (after doctors here told us) that we needed to leave to find answers.  So, we did. 

While there, as you all know well, we spent an inordinate amount of time at various hospitals – not just for Henry – but also for Luke.  We learned a lot.  A lot that we never really wanted to know.  Things that no parent would.  Henry and Luke both have Complex 1 mitochondrial disease, and it’s degenerative.  The kids’ team was tremendous – in educating us about this horrible and unforgiving disease, in helping us obtain resources in our battles against it, and in reassuring us as parents that we were doing all that we could – all that anyone could when faced with this.  Loving our kids and each other, and sharing our hearts with them every day – enjoying each minute – was the best treatment.  The only treatment for a disease that takes your life – but not your heart and soul.

The doctors were also so gracious in telling us one of the most important things that we will ever learn about this condition:  there are no concrete answers.  They told us that they didn’t know many things.  Given our journey, that uncertainty – though a little disconcerting – was refreshingly honest.  At Henry’s last appointment in Cincinnati, the doctor repeated a message that he had probably said a dozen times – though this was the first that I heard it.  “There is nothing more we can do.”  Hearing that is jarring, and seems ridiculous.  They are doctors; specialists that we moved across the country to be near.  Of course they can do something.  So, I challenged him.  “What do you mean?  He’s only 4 ½ (which he’s almost 5 – but I’m stuck with only half-year ages like all kids that pay attention).”

Dr. Franciosi, who is the second doctor that we moved close to that is now moving away this summer, folded his hands and tilted his head slightly.  Henry was engrossed in the video that they had put on.  Dr. Franciosi smiled warmly, which was nothing unique but felt different that day.  He said that they would watch Henry (and Luke), test them twice a year to see if any of their major systems was deteriorating, and treat any system issue as it arose.  He mentioned that Henry might, at some point, need to have an open line to receive his nutrition.  But, aside from the monitoring and treatment of any issue that comes up (which they have no idea what or when those might occur), there is nothing that they can do.  Nothing.  So harsh.  Final.  Unfair.  (For those of you that know us really well, this has just spurred us on to look at other avenues – look at what other hospitals are doing and light fires under organizations with the brainpower and manpower to change that answer.  But, not at Henry’s expense.)  Because Henry is tired.

Our Little Buddy, and His Family

Henry has always been a trooper.  I’m pretty sure that he will remain the strongest person that I have or ever will meet.  But, he is tired.  Not too long ago, he was always on the go.  Recently, though there are exceptions, he’d rather be at home.  When we visited Kristen’s parents, he was always fired up about going on the morning walk and heading to AJ’s.  Now, he’d rather stay in.  When he’s out, he’ll have his fun, but is not shy about telling us that it’s time to go home.  He’s tired of Henry’s Hope events and book signings – both would light him up just several months ago.  And when we’re home, Henry will now tell us to take him to bed – where he falls asleep next to us as soon as his head hits the pillow.

Henry is tuckered out, and he has every right to be.  So, our pace is changing.  Our focus, which has always been on our daily enrichment as a family, remains there – but seems even more important.  Spending time with friends and family seems to have a greater urgency – that we’d rather not admit to ourselves, or even say aloud.  But it is a reality. 

And to that end, there are a couple of other factors.  Kristen’s dad, Art, has another awful disease – Parkinson’s.  Henry and Art have always had a uniquely close relationship.  They have their own language, it would seem.  And they truly worship one another. 

Henry’s Uncle David is another shining light in his life.  He and his wife currently live in Tucson, but are often up to the Valley.  And, just as they adore Uncle David, the kids all have a special place in their hearts for their Aunt Lolo, Uncle Todd, and the Johansen cousins.  They live a day’s drive away from Arizona.  Before moving to Indiana, we saw them pretty regularly.  And, it would seem that being with family is not something that we can do later.

One other item that I rarely let myself think about (quite selfishly), is how tired my beautiful bride is too.  I’d give anything not to see that.  Don’t get me wrong, I’m tired too – I just avoid looking in the mirror.  But this amazing wife and mother gets up every day, puts her smile and game face on, goes out to tackle the world – all the while torn up inside.  Having the support network of her family, and seeing the kids spent time with them, might change things a little and give her some comfort – like I think it will me. 

Strangers Turned Family

While leaving now is certainly the right thing to do, it certainly tears at our heartstrings too.  While in our little town of rural Indiana, we found something that we didn’t expect – a community that has opened its arms to us and treated us like members of their own families, teachers that know and love our kids (and us), friends that have given so much of themselves that we’ll never be able to thank them enough.  We cannot say goodbye; we won’t.  Just see you later, and know that you have a place to visit us in Scottsdale!  

No Mansion, Not a Millionaire, But Do Have  a Pool

Yes, we still have to work.  But this is how I think we are guided on certain paths (or hit over the head in some cases).  After the doctors that we moved near moved, and after the conversation at the last appointment, and after seeing Henry tired, and after seeing Kristen grow miserable in her professional work – I have been given an amazing opportunity.  A client that I had worked with for almost twelve years had an executive position open up in house, and of course, it’s in Phoenix.  Meanwhile, Kristen is still in the practice, but actively looking to serve her home State of Arizona and its children; and she’s getting more than her share of nibbles.  It is all coming together nicely.

So this week has been about getting the house ready, and it’s almost there.  Kristen is on the other end of things getting our current house ready for the moving truck and for sale.  I head to Indiana on Thursday – where we will celebrate Henry’s 5^th birthday on Friday.  Then, I’ll fly back with two of our kids to Arizona one week from today.  And Kristen, accompanied by Kiki, our trusted friend and truly part of our family whether she likes it or not, will drive out with the other half of our clan.

We are sad to be saying “see you later” to our wonderful New Pal friends and can’t thank you enough for giving us the love and friendship that you have and will continue to.  But we are extremely excited to be going to get the best – maybe the only real medicine – that Henry, Luke, and our whole family needs – to be home.  And to be with our family.

Dedication:  This post is dedicated to Mylee Eaton, and her tremendously brave and loving family.  Mylee’s mom and I have been friends through the horrible disease called mito.  Mylee had many symptoms similar to Henry’s; but like Henry, she would light up a room.  A few weeks ago, Mylee took a turn for the worse.  And this morning, she passed away.  She was surrounded by her family and loved ones, and am certain that she is without pain now.  Please keep Mylee, and the Eatons, in your thoughts and prayers.  And go hug those that you love.  Do it again tomorrow, and the next day too.

To volunteer or donate to Henry's Hope, go to www.henryshope.org; to purchase Three Candles, go to www.threecandlesbook.com. 

Holy Mother! I Mean Happy Mother’s Day

By Troy Foster

Mother’s Day hits this year at the perfect time.  I know it’s the same Sunday in May – but this year – the timing has been key.  You see, my wife – mother of our four – has been gone for the whole week and returns tomorrow.  And though nothing out of the ordinary happened in the Foster Family this week, it gave me (and the kids) a renewed appreciation for Kristen on this Mother’s Day!

Missed Buses, Lost Kids, Naked Nocturnal Baby (With Waterworks), Car Accidents, Naked Barbies, Lollipop Dinners, and Seatbelts/Clothes/Baths/Names Optional

Three things.  First, I said nothing out of the ordinary happened.  That doesn’t mean that this wasn’t a highly entertaining week – especially for those on the outside looking in.  Second, you must realize that I could not write this until now – the day before Kristen returns home – for fear that she might cut her trip short.  Third, despite the heading and the words that follow, I think I did a pretty good job. 

Starting on that last point, please understand that there are few things that I’m confident about.  One, however, is that I’m a decent father.  Kids are safe (mostly), loved, and love life.  So, as we started the week, I thought this was going to be a piece of cake; I’ve done it before.  Not the first time Kristen has gone out of town.  This week was different.

The Transition

Whenever Kristen leaves (whether it is to the grocery store or out of state), all of the kids want to know “when is Mommy coming home?”  They don’t listen to the answer.  Their question isn’t a question – but more of a demand.  So, that never gets old. 

Henry is the most persistent.  “But I need to cuddle with Mommy before I go to sleep.”  He starts diplomatically, “I want you both, Daddy, but need Mommy.”  And as he grows more and more tired, his raw feelings are revealed “I don’t want you; I want Mommy.”  This, I knew from the very beginning.  But as soon as his sweet explanations turn terse, I know that he will soon fall asleep.  Before he does, like clockwork, he turns to me, puts his hand on the side of my face, rubs it softly, kisses me and says “I love you.  But I still want Mommy.”

Get Out the Vote:  Day 2

I love election days.  Always have.  So, I thought I’d share my enthusiasm with the kids.  They were not interested.  In the voting booth, Luke criticized my choices – pretty loudly.  “You think he is the best person for President?  Really?  Is he the one that left his dog on the roof or that wants to build houses on the moon?  Or is he the one that doesn’t believe in evolution?  Will you still pick him over President Obama?  Are you picking him so that President Obama will win?  I thought this didn’t even matter?”  And then, “I’m hungry.”

As I hurried to get the too-young-for-civic-duty-excitement kids to the car, my way-too-big shorts fell all the way to the ground in one fell swoop.  And as I took another step, I fell down – almost landing on Henry.  Right in front of the poll workers – you know where every candidate has someone there to represent them.  Most were nice and pretend not to see, turned and smiled.  The kids, however, were less gracious.  I got their chortling butts to the car pronto, one hand tightly gripping the side of the shorts.

Who Are These Kids?:  Day 3

Literally – not just their behavior – their names.  Who are they?  It happens to all parents, but my fatigue led to me to not only forget which one was which, but had me calling our kids by their friends’ and our dogs’ names.  At one point, I gave up “Chinese daughter, please go get your sick brother’s shoes and tell me if your African brother is still awake.”  Close enough, right?   (I didn’t really say it, but was very, very close.)

Another difference is that the kids have treated me differently than they do their mom.  After I’ve said “no” five times, they usually don’t ask again.  Something changed this week.  They were relentless.  I don’t remember doing it, but I must have given in at some point – the proverbial blood in the water the kids needed to spot their victim and attack!

Head Count:  Day 4

A big day, and failure.  Actually, a success in that the kids are all still alive.

The older two had swim lessons right after school.  So, I had arranged to pick them up – along with Henry – at the school and go from there.  Easy, right?  No.

The school forgot and put Henry on the bus.  Because he was sobbing, the bus aide called me and I was able to get him off the bus; he was still sobbing when I got there.  And then I saw Luke in the hallway.  Seemed like it was getting way too easy.  So, I grabbed him.  Two out of three. 

I was feeling so good that I didn’t want to be rude and go get Lily from heading to get picked up and cut in front of the long line of parents; so, Luke, Henry, and I went to the van and got in the line.  Only to see Lily marched out front with the Principal and her teacher.  As they looked around, I got out of line – nearly hitting a suburban that didn’t see me coming.  As I pulled up, Lily had vanished.  We got out of the car to find out that they put her on the bus home.  But, seeing me, they called the bus and it had pulled over and was waiting on me.

Things were going to pot fast.  We got in the car, and the kids were loving it.  A little too much.  Then, as I was backing up, I realized that they were giggling because – not only had I forgotten to buckle Henry in (that happens) – but I had forgotten to shut his door.  So, I opened my door, jumped out, and quickly realized – too late – that the car was still in reverse.  I chased it back, jumped in the car, and slammed on the breaks – stopping the van (with kids in tow) just inches from the parked cars in the school parking lot.  In front of – everyone.  The kids cheered me on, and Luke told me that he was glad that I was exercising because I had to move fast.

We got Lily, got them changed to swimsuits and went in.  It wasn’t until we sat down that I looked up and saw that Henry had brought in a naked Barbie.  He played with her – for a little while – and then I was relegated to holding naked Barbie.

More Nakedness and Car Trouble:  Day 5

After easily going to bed, I woke up in the middle of the night to Eli’s naked butt bouncing up and down on my head.  As I became more alert, I saw our happy and chipper 2-year old boy swinging his diaper over his head as he bounced up and down.  And then I felt the wet.  He had peed all over the bed.  Nice.  Very nice.

After a not-so-restful night, I got up and was ready for round two!  I was ahead of schedule and ready to put some stuff into our van.  But it was locked, and the keys were locked inside.  Luke then told me the whole horrific sequence of events.  He took the keys, unlocked the car, our dogs went inside and pushed the lock button on the keys, and they all got out and shut the door.  Right!  Anyway, Kristen has the spare set of keys in Arizona. 

And no time to waste.  She for the last couple of days, we have been driving around in our Jeep – Wrangler.  The four kids and I fit snuggly.  It was really interesting when we had one of Luke’s friends over for the evening.  Six of us pushed it.  We’re excited to go pick Kristen up at the airport and show her how well we fit inside.  (Yes, I thought of getting another key made.  But the registration, insurance card, and other things that they want are in the van. Of course.  So, it just seemed easier to wait.  If we didn’t, there’d be a whole new entry about our adventures at the dealership – I guarantee it.)

Home Stretch

The week started somewhat regimented.  I had the kids get their clothes out the night before, homework gathered, papers signed, etc.  As I write this, I have no idea whether the boys have underwear on – and socks – please, we are all wearing sandals so it had better stay nice.  I still make them brush their teeth, but if Kristen wasn’t coming home tomorrow, I’m not sure how long that would last.

And I think that I was appreciative before, but this week has made me appreciate so much more how Kristen and I are a parenting team.  We can hardly wait to celebrate a “mother” of a week with Mother’s Day this Sunday.

Happy Mother’s Day to all of you moms and moms-to-be!  Cherish your time with your kids, your parenting teammate, and with yourself!

For more inspiring stories about Henry, buy Three Candles today.  Available online via Amazon or at www.threecandlesbook.com.  Proceeds to benefit Henry’s Hope at www.henryshope.org.  

Henry’s Walk for Hope: A Humbling Experience

By Troy Foster

The Warm Up

Last Saturday was the day.  Much work and planning had gone into getting the event together.  Dozens of people were working feverishly behind the scenes to pull it together.  And dozens and dozens more had committed to walk for Henry’s Hope – to help bring awareness and raise money for children suffering with chronic, life-threatening, or terminal diseases.

For his part, Henry was geared up too.  The week leading up to the walk, he asked me what happened that day to advance the walk.  It was a familiar feeling – I’ve had many a boss request daily updates on my progress.  They weren’t 4 ½, but probably not as effective as Henry either.

More important to Henry though were two things.  First, and it almost goes without saying, he was going to “win” the race.  In the days leading up to the walk, he asked many folks we’d encounter whether they thought they were going to win – just to make sure they knew where they stood.  Second, Henry wanted the walk to be BIG – “the more people that come, the more kids we can help, right?”  And he kept asking, “it’s going to be big, right Daddy?”  (As an aside, Henry wants everything to be big – me, his mom, etc.  He has it that anything that is great is BIG; in this case, he was right on for the walk.)

The Steps Not Taken

Saturday morning, Henry woke up bright eyed and more quickly than usual.  “Today is the walk,” he said the first part sounding like a question, but as he finished the phrase it was clearly an exclamatory statement.  All of us were fast in getting ready and loaded the car like a fine-oiled machine – and with four kids (oldest 7) and two tired parents – that is saying something. 

As we opened the garage, I reminded Henry about the rain.  We had known that the forecast called for rain that morning, and thought we would have back up plans made.  So the rain wasn’t really a damper.  “That’s ok, Daddy.  They can’t cancel it.  It’s my walk.  Only I can cancel it right Mommy?”  We agreed.

But, as we drove, the heavy drops fell more quickly.  The dark sky was ominous, and we could see no break in the clouds.  For once, it appeared, the forecast was right on. 

And unfortunately, there was not an indoor alternative.  So, after much effort, thought, preparation, and anticipation – and so much work by many – the walk was canceled.  Henry was devastated.  Heck, so was I. 

And as a parent, when you see this face, it is heartbreaking.  Even more so when it’s not for being told that he didn’t get a toy or didn’t get to go to the movies.  But this face was a result of not being able to walk for hope.  That, in itself, was a huge lesson for me.

And, I got mad.  Anger is not my thing.  Never have liked it (on the receiving end) and not comfortable being it.  Seems so counterproductive and unnecessary.  But the face is my excuse.  My anger solved nothing, and it never does.

The Finish Line

Even with the event canceled, Henry was able to serve as a great teacher before we left.  Not 10 minutes after his heartbroken face (above), Henry was on to other things.  He asked Kristen to send a text to those that worked hard on the event – it to say “Let’s schedule this for another day.  A sunny one.  Don’t worry, dawg.”  No idea where he got the dawg thing or really what it means.

And he saw his friends.  Though against our better judgment (he had a little cough and it was raining), we let Henry run out and talk to everyone that were going through the motions of wrapping the non-event up.  And then, as quickly as it came, his disappointment faded.

He was laughing with the Ransburgs, chasing his good friend (Chad) and holding Bailey.  Also excited to see both “his Steve” (Enochs) and “Mr. Steve” (Harding) – both of whom he adores.  He was racing Korey down the track, and giggled as Korey “fell” in exhaustion – but was quick to help Korey up.  He chased Brian (who was the only person that seriously wanted to beat Henry it seemed) and his family – giggling, smiling – being a kid.

He was done pouting.  Done being upset.  Done with the face that, though we don’t see it often, brings deep pain to our hearts.  He had moved on – much more quickly than most adults do in their disappointments and much more quickly than I had in this one in particular.  Henry had embraced what he had that day – time to see, play with, entertain and be entertained by – his friends and people that care about him.  (By the way, those of you that know Henry, know that he doesn’t have age – or really any other – barrier.  He considers Steve Enochs one of his best friends – maybe he and Chad are tied right now.  And he has no fear of “tall adult Korey that is my friend.”  I asked “you mean my friend?” to which he replied “Ok, you can be friends with him too.”  I love that about him too.)

It reminded me of a promise that I made.  That I, too, would embrace what the day brings – enjoy those around me and cherish each moment.  Not take anything – any memory with those I love – for granted.  Even days, and maybe especially those, that don’t go as planned.  Yes, it was rainy, cold, dark, and utterly unfit for what we were to do that day.  But, as Henry’s reminder made clear – the fact that we got to see, hang out with, and enjoy our time with people that are important in our lives – it was a great day.

For more uplifting stories and adventures of Henry, get Three Candles at www.threecandlesbook.com.  Proceeds benefit Henry’s Hope.

***If you are interested in joining us for our rescheduled walk (TBD), please shoot us an email at hope@henryshope.org.  

Foster's Fodder for Thought: The Magic Kingdom, Soccer Season, Giggles … and Ug...

Foster's Fodder for Thought: The Magic Kingdom, Soccer Season, Giggles … and Ug...: By Troy Foster The last several weeks have been similar to Space Mountain – the amazing, nauseating roller coaster in Disney Wor...

The Magic Kingdom, Soccer Season, Giggles … and Ugliness

By Troy Foster

The last several weeks have been similar to Space Mountain – the amazing, nauseating roller coaster in Disney World.  We accompanied Henry on his wish to Disney World – where we were all pampered and had such a great time.  When we returned, Henry began his long-anticipated soccer season – something he’s been looking forward to for over a year and which he was cleared for a few months ago.  He has been exhilarated through both experiences, and the smile has rarely left his face for almost three weeks now.

Then why, you may ask, should I have anything “ugly” to write about.  Nothing has happened per se.  Aside from our family having fun.  But, a rush of anger and sadness hit me even before our return.  After mulling it over for a couple of weeks, I think this kick in the gut is due to the vast difference and stark comparison between what Henry experiences, cherishes, and bestows (love, kindness, play, and delight in being with people) and what some others (even his peers) gravitate toward.  The night and day experience of our trip and the reality of the time ahead.  And, it boils down to what Henry has taught us not to do – focusing on the future and not embracing the here and now.  But, I am only human – and will forgive myself this slip.  Know, however, as I write this, I am back on track with the here and now, and coveting even more the gifts that we have every day.

The “Magic” in Kingdom

After weeks of inquiries, “how many sleeps until we go?” it was time.  The early morning was dark, unseasonably warm , and the air was filled with excitement.  All of us were.  And then, a long white stretch limousine pulled up to our driveway; Henry jumped up and down, cheering it on – laughing hardest when the limo’s belly hit the concrete before coming to a stop in our driveway.  We all piled in, had a donut that I got from the grocery store the night before (yes, Henry got to cheat), and were off.  We giggled at the thought of being in the limo, knowing where we were going, and knowing that we didn’t know precisely what the next week would bring – but knew that it would be fun. 

And it was.  In anticipating it, there was no doubt, but we couldn’t imagine how terrific the experience would be.  The roller coasters seemed extra fast.  The light parade appeared brighter and real.  Everything appeared – magical.

Then, I realized what it was:  The sparkle in the kids’ eyes.  Something most adults experience – seeing magic through their kids.  We should all do it more often as a rule.  But for us, it was different.  For me, it was the first time I had been to Disney World – and the kids ate that up.  “Daddy, how did you like your first time on that ride?  Were you scared?”  It was something we shared together.

It was also different in a more solemn way.  We saw it through the eyes of a little boy, our Henry, who will not get to see that joy in his kids’ eyes.  Or who knows how many more times that he will experience it again?

Those thoughts quickly brought me back to Henry’s lesson.  Enjoy each ride.  Enjoy the time we have together, and make as much of that time as possible.  The magic, I was reminded on this trip, is not in where you are or what you ride and see, but who you are with. 

Though we are now at home, our magical ride continues.  And the memories that we’ve made (Henry clutching my side as we went on the Harry Potter rollercoaster, and afterward telling me that it wasn’t scary and he was so brave) we’ll always have.

“GOAL !!!!!”

Henry has always wanted to play soccer.  His older siblings have, and he just wants to do what other kids are doing.  He was excited when his cardiologist gave him the thumb’s up, while warning us that Henry may need to sleep for long periods afterward.  The countdown to his soccer days came to a close the week we returned from his wish.

On his first night of practice, he was thrilled.  He had shin guards.  He had a soccer ball.  He had a water bottle for rest breaks.  He had everything that any other kid that’s going to play soccer would have.

His coach is a friend, knows of Henry’s condition, and his fire to play.  Both she and her assistant coach were absolutely terrific.  Henry reported quickly off the field “I love Coach Aaron.”  And his team is a bunch of 4 and 5 year olds – eager, excited, encouraging.  Especially when Henry got a goal during his first team.  The kids cheered him on, he was elated, and still smiles from ear to ear when he tells the story of his first goal.

No one – not his teammates, the coaches, the parents – no one – cared one little bit that it was on his own goal.  But Henry’s no dummy; he’s confided in me with whispered tone “it was still a good goal even though it was ours, right Daddy.”  Without skipping a beat, “you bet, Henry” rolls off of my tongue.  And I couldn’t be more proud.

Yellow Card

No, I didn’t get one, but am not making any promises.  With all of the positives that soccer brings, certain realities snuck up on me yesterday.  And, I was overwhelmed. 

Henry is, by far, the smallest member of the team.  This reminds me that the doctors are concerned about his weight, and I wonder “should he really be running around.”

That question is heightened by other observations.  Henry is easily winded on the field, can’t keep up with the other players – which reminds me that he might need an extra breathing treatment after practice.  After practice, his legs hurt and he’s exhausted.

Despite all that we have tried and done, we will never escape the reality that hit me so hard yesterday.  That Henry is different.   But, it also reminds me that our focus should always be on something else.  His infectious laughter while on the field, his anticipation in between games and practices, his eagerness on the field, and his joy in telling stories about his soccer career – now two weeks old.

Those things, I think, are what matter.  It’s what most parents experience with their kids, and what Henry wants.  And for us, it is a treasure.

Anticipating the Robbery

These treasures seem even more precious given that we know that we will have less of them.  Or at least less time to create them.  That is a difference for us – not Henry.  When we see him on the soccer field, we mourn the days that he won’t be able to play.  The days that he’ll be too tired to walk.  The days that he’ll be tired to do much, of anything but sleep.

Bit by bit, we mourn memories that we won’t be able to create with Henry.  Though our practice, at Henry’s wise insistence, is to create memories now – some, we just cannot.  Him getting married, having kids, and that list goes on and includes the things that I now cherish the most.  It’s like seeing a robbery before it happens.

But that sadness is, quite readily clear, for us – not Henry.  So, though I give myself permission to mourn a bit – I will never let it distract me from enjoying the present.  And knowing that’s what Henry does.

The Ugliness

Some of the thoughts above are unpleasant, but do not compare to some of the people that I’ve encountered as of late. 

On his wish trip, Henry gets preferential treatment of sorts.  We all got to ride the rides on an expedited basis, Henry got to see the Disney characters more readily, and one time, the characters swarmed him all at once just to hang out.  Nothing over the top, but the thought is that these kids will not expect as many trips back to the Magic Kingdom as the others in the park.  So, let them see as much as they can.  And quite honestly, Henry (and I’m sure many of the other wish kids) simply could not stand in the lines; it would not be physically possible.

At first, we were a little embarrassed about the treatment and didn’t want to highlight Henry’s differences.  But soon, my parental instincts took me in a different direction.  Henry needed us to help him see as much as he could see; speak for him with the privilege he was given.  We were gracious, quick, and always personally thanked any families that we bumped – but we used the special pass.

To my surprise, some in line were upset.  We saw the scowls on their faces, rolling of the eyes, and even the inspection of our kids to hopefully have an apparent answer to their question.  It was disgusting, maddening, and disheartening.  And if that wasn’t enough, once someone said something – in my earshot – but not to me.  I was ready.  Ready to ask if he knew that these kids might not be coming back here.  To inquire whether he was going to be taking his daughter to several doctors appointments the following week, or whether she could eat – no, her chubby little cheeks, the rolls on her stomach with hot dog in hand revealed the answer – though I wanted to ask.  Ready to ask him whether he knew that Henry had waited in line to see Mickey Mouse (tracked him down, in fact) to give him a present.  So Henry.

And the Angels

My anger was leading me down a path that I never wanted to go down.  And just before I could say anything, two miraculous things happened.  I heard the sweet voice of my son saying “thank you,” and as I turned, saw him smiling and waiving at Goofy and those in front of the regular-kid line.

Just as I turned back around, I saw another little angel skipping toward us. She wore a white princess dress, smiled brightly and outshined the sun reflecting off of her bald head.  She had a wand in one hand and waved at the kids in the regular-kid line with the other – clearly out of pure joy.

Grace, dignity, love, and purity.  I said nothing, wiped a tear from my eyes, and smiled.  And those actions best sum up our last few weeks.  I love "my things" and my beautiful wife.

For more stories about Henry, Henry’s Hope (www.henryshope.org), and the special children we encounter, check out Three Candles.  It’s available directly on www.threecandlesbook.com and via Amazon.