The Skateboard

by Troy Foster

I’ve been thinking a lot about a skateboard for the last couple of weeks.  Trust me, I’m not a skateboard guy, never have been, and don’t plan to pick up this new hobby.  Though some of you would have fun watching that unfold.

No, my newfound interest in this board with wheels comes from Henry’s obsession.  Like most parents, we began waiting it out.  Wait for him to lose interest – or even forget about it.  Straight from Parenting 101 when a 5-year old asks for a skateboard, right? 

He was relentless.  Henry described the colors, how it would feel smooth at first but rough after awhile, the skateboard’s shape, what the wheels looked like, and the decals that he’d put on his ride.  With a description so vivid, you can’t help but visualize his skateboard – and just know that you are seeing the same thing he imagines.

Parenting 101 in full effect had us relaying a lot of empty “what a great imagination,” “maybe Santa Claus will bring it one year,” or “that’ll be nice when you’re older,” etc.

Then, Henry started talking about what it would feel like when he rode the skateboard.  His anticipated excitement of going fast or up, down, and around was unremarkable.  But the look on his face as he described it, the pure joy, bright eyes and wide smile, and his giggle – left me speechless.  Then, I noticed that I was smiling along with Henry.

And then, I was horrified.  The path I had been on was to let Henry wait to experience something every kid should.  An activity that his feeding tube, pump in his backpack always on his back, his muscle weakness, and breathing issues would all caution against.  As would the fact that those things are expensive and we’re not made of money.  Surely, Parenting 101 would say “no way.”

We were quickly reminded that we’re on a different path.  Later, when he’s older, Santa’s visit two years from now – all speak of a future that might not be.  A time that Henry’s disease may rob him (and us) of.  So, as we have with other things, we look to enjoying and experiencing the things that we can.  Even if not age appropriate, the most financially responsible, or other things that Parenting 101 would instruct.  Though his disease may limit what he’ll experience, and us with him, we won’t let norms or practicalities stop his smile.

I have a sneaking suspicion that Santa will be toting a skateboard for Henry this year.  I know that friends of ours – other parents brought together because they face similar challenges/tragedies – would do the same thing.  That is especially true of our dear friends that have already had to say goodbye to their little ones.  (I was just listening to a song by Taylor Swift www.youtube.com/watch?v=KiX7fA9da6A – dedicated to one of these little boys – Ronan; I know that he – and his parents – wouldn’t think twice about this odd dilemma.)  The skateboard it is! 

By the way, I dare you to listen to that song and NOT cry.  Impossible.

To help children with terminal or life-threatening illnesses, please visit www.henryshope.org.  

Childhood Cancer, Special Needs, and the Shining Star – Hope

By Troy Foster

Life is crazy.  And the world is quite small.  Since moving back home – across the country – we have discovered that Lily is in the same class with a little girl that is the daughter of Kristen’s high school friend.  One of the kindergarten teachers, familiar with Henry’s Hope (and his little face), also happens to be a high school classmate of mine.  Those tidbits came as a comfort; our kids were among friends and people that cared about them and us.

That comfort remains, but has been jolted by a couple of layers.  The little girl, Emma, has a brain tumor.  That, for me, seemed to be the straw that broke the camel’s back.  It was maddening.  I was furious, enraged, deeply saddened, overwhelmed, and exhausted.  For me, showing the anger is not easy; before, I would bury it completely, dive deep into work or other things that I could “control” – and we all know that it comes out in some way eventually.  Now, having worked for years on this, I can cope with the feelings and deal with them head on.  Much healthier, but unpleasant nonetheless.

You see, we had heard this news – a child with a brain tumor – before.  A friend that I used to work with years ago, had a son – who is famously referred to as Rock Star Ronan.  That beautiful boy lost his battle with cancer at 4.  In following his mom’s blog, that family’s experiences were horrific, almost unbearable, unfair, and overwhelming.  They had gone down a path that we followed them on; we had experienced many similar ordeals and have no idea what they went through in losing Ronan.  But, we will. 

That fact is overwhelming.  So to try to better cope, I took great advice from my therapist and stopped following the blogs that seemed foretelling.  I stopped working directly with Henry’s Hope families, as their stories were too raw for me; our organization would help, but it wasn’t something that I could personally do.  These new coping mechanisms worked well.  And then, another little girl.  Another family who is courageous, but even on the outside you can see their fear, desperation, exhaustion.

So, I took another piece of therapeutic advice.  Distanced myself from those circumstances.  Before, I would not let myself do that – thinking I was being selfish, too self-centered, etc.  But in truth, diving in to help never resulted in a positive outcome for anyone.  And, I was useless to all. 

So, distancing seemed to work.  I was coping.  I was healthy – sleeping, no anxiety attacks, no deep depression, no burying myself in work.  All healthier means of coping.

And then . . . .

My kids challenged me even further!

Lily, being Lily, has befriended Emma and talks fondly about her.  She doesn’t say anything about Emma being sick; she knows all about it, but she talks about her favorite color, what she likes to play, what she thinks is funny.  Far more important things than the things that I’d be angry about or try to help with.  You see, the help that I would always try to provide was in an effort to “fix” things, cure the disease, make the illness more tolerable, search for alternative treatments – all things that I am not equipped to do and that were failures before I even started.

Lily, and the wise children that I see (most are more wise than I), wants to help by just being there.  In being Emma’s friend.  Laughing.  Playing.  Treating her like the kid that she is.  And she’s successful every time.

Lily and Henry recently joined a club that meets after school.  The club partners with Phoenix Children’s Hospital and does things for kids that are sick in the hospital.  Fun things.  Things that recognize that they are kids; not see them as sick.  I’m so proud of Lily and Henry for seeing what’s important.

And Luke Took it Even Further

A couple of weeks ago, I realized that the coping tools that I’ve learned (and continue to) have been put in place just in time.  Because, as a parent (though newly learned), I’m going to have to teach some of these skills to our kids.

Luke and I were having some fun time, and he told me that he loved his school.  When I asked why, he started to cry and told me “Because they have a whole room for the special kids.”  He was referring to the special needs kids.  Then, he said something too familiar for comfort.  Wiping away the tears, he said “Daddy, I want to figure out how to make them fine.  How to cure them.”  I saw myself in him.  The raw emotion that he had was difficult; so, he shut it off – put it away and hatched a plan to make it all better.  He was going to make it so that the overwhelming sadness would go away – because he was going to “cure” all of the special needs kids.  Just like I thought that I could cure him and his little brother.  Because if I thought that was true (even remotely), I wouldn’t have to deal with the reality.

“Luke, they don’t need cured,” I said.  “And we can’t do it even if we wanted to.”  He looked up at me – surprised.  Unbeknownst to me, I had already taught him that we should take affirmative steps to overcome bad things to avoid feeling them at all.  “We can’t,” I repeated.  His shock turned back into sadness, and tears rolled down his face.  I hugged him, and joined him in crying.

“It’s ok to be sad and to cry,” I told him.  Something that I had just discovered in the last few years.  And then, I took a play out of Lily’s playbook!  “We can play with those kids though, help them have fun,” I said.  As he wiped away his tears and took a deep breath, he said “Making them smile is good, right?”

Yes Luke, it is the best.  The very best medicine anyone could want.  I learned it relatively late in life.  But on the hard days – when Henry has a hard time walking, when Luke wonders aloud whether he could die from mitochondrial disease – I treasure each and every smile given to me.

For more inspiring stories, please check out Three Candles – a book about Henry and Henry’s Hope.  (www.henryshope.org or www.threecandlesbook.com).