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.