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.  

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).

"Super Parents" Need to Give Us Normal Parents a Rest

by Troy Foster

I love Christmas.  It's my favorite holiday for a lot of reasons.  Having four young kids makes the holiday and the lead-up extra special.  The magic of Santa, his reindeer, the trip down the chimney, and the story behind it all provides so much hype and buildup.  It's impossible to replicate the pure excitement and happiness on the kids' faces.  And, I love it.

But, I can't stand the "Super Parents."  Every year, there is something new and different about Santa that throws me a curve.  This year, my son's friends (many - not just one with parents that have nothing to do) got calls from Santa.  Seriously?  I barely get the phone when it rings, tripping over the kids' toys all along the way.  So the kids are satisfied in blaming me for missing St. Nick's call.  And, they are not happy.

Santa is apparently on a new health kick too.  My son's classmates are talking about giving Santa snacks that will help his energy level for the long trip and not junk food.  No cookies and milk?  Ok super health conscious parents, I am not killing Santa with the cookies.  Come on; we all know Santa isn't going to die from those cookies.  And, I'd appreciate you teaching your kids healthy eating on your own time.

And the reindeer now are hungry too?  We have to make special and magical oat mixtures for them?  I can barely get the kids' breakfast in them, get their faces washed and out the door.  Now, I'm making reindeer energy oats?  So they can poop on my roof?  No, we have plenty of poop in our house that I'm cleaning up.  The reindeer that our Santa uses have super duper energy and no oatmeal with glitter is necessary.  (And is glitter really healthy?)

Now, there's the Elf on the Shelf.  You know, the little Elf that watches the kids and reports how they're doing back to Santa?  Though he looks extremely creepy, we welcomed our Shelf Elf, Finn, with open arms - because pointing to him usually scares the beJesus out of the kids and misconduct becomes a rarity.  Heck, I was good with keeping Finn around for the entire year.  That was until the Super Parents decided to make him do stuff.  Now, I can deal with having him move from one shelf to the next each night.  Just barely though; and on the nights that we forget, the kids have bought the excuses (weather, he liked the spot, etc.).  But I keep hearing about other kids' elves doing all this crazy stuff.  Some go into the freezer because they miss the North Pole.  Some mischievous elves make huge messes in the middle of the night.  Some leave cute little videos of themselves walking around the house.  My son keeps emailing it to me.  There's even a website that lists the top 101 things that you can have the elf do.

Beyond ridiculous.  I don't have the time to make a huge freaking mess (when I'm supposed to be sleeping - and I need it by the way), pretend that it's cute first thing in the morning before my Diet Coke (which is necessary prior to any decent communication), and pick it up as I'm getting the kids ready.  Much less time to produce and post a movie of the doll walking around the house.  Finn don't play that way.  And a note to the Super Parents:  knock it off.  We need our rest.

More importantly, the kids don't need the extra.  It's plenty magical - even more so - when it's mysterious - without healthy Santa, the need for energy oats, calls from Santa, or Shelf Elf's gimmicks.  So please, Super Parents, give it a rest.  So we all can get some.

"Let Them Eat Cake"

by Troy Foster

We celebrated Henry's birthday this week.  He turned four.  In so many aspects, it was just like any other four-year old's birthday.  A magical day of excitement for all.  Like any other four-year old, his birthday has been a big and anticipated moment for several weeks.  So much so that fights between Henry and his older sister, Lily, would result in Henry's retracted invitations to his birthday party.  And, moments later, Henry would sweetly and softly tell Lily (and others) that "you are invited to my birthday party" - as the highest compliment and most precious sign of affection.  Thankfully, you could receive multiple, equally meaningful invites - without having to go through any disinvites - a painful process that Lily (and Luke) endured many times a day.  (I was only removed from the birthday list once when I told Henry that he needed to go to sleep.  No dummy, he quickly realized that I would be pivotal to any celebration, and was invited again, with much less enthusiasm, however.)

Also, like most four-year olds (to be), Henry had coveted many "things" for his birthday.  Though throughout the year, parents often hear the "I want that for my birthday," the requests noticeably intensify in the weeks leading up to the actual day.  Virtually every commercial ended with the request - seemingly less about the particular toy, book, or other thing - and more about the fact that he was about to get something very soon!  And, again like most, Henry never really cared what the actual gift was, or how many there were.  He was just happy that it was his birthday.

There were also differences.  Stark differences that we are able to forget, or really deny thinking about, for most of the year.  But not on his birthday - certainly not this one.  Unlike most four-year olds, Henry can't eat foods (except for bananas, grapes, and black beans).  So though most celebrate with cake or their favorite meal at their favority restaurant, that's not in the cards for Henry.  It's easy to overlook how involved we, as a society, are with the cake.  From the selection of the cake, the favorite character to top it often more important than the flavor, to the delivery of sweets to the classroom - the dramatic lighting of candles - ending with a song that unites everyone in celebration of our birth - of us.  It's a big deal.

An even bigger deal, I think, if you can't enjoy it.  In years past, Kristen and I have done other things to make the day extra special.  We made a cake out of non-edible things.  Last year, we went to the local cafe and asked them to put a candle in a banana, and come out and sing "Happy Birthday."  Both were big hits.

This year, we knew very early on, that it wasn't going to be so easy.  In prior years, he was either the youngest or his younger brother was a baby.  Not this year.  Eli could eat a whole cake if we let him.  So, Henry had been asking to "try a taste of special birthday cake" for months.  As with a lot of things, Kristen and I hatched a plan - without even saying a word to one another.  Henry was going to have cake this year.  Was it responsible?  Good parenting to give cake to your child who is allergic to virtually every ingredient in birthday cake?  (And trust me, we have looked, but can't find any cakes with black beans, bananas, and grapes.)  Were we weak parents or doing something more for us than our little boy?

Without any in-depth discussion, we both agreed that his auto-immune disorder was the least of his worries (never thought I'd write that - maybe that's why Kristen and I don't verbalize it).  Having foods that he's allergic to would create long-term problems for his digestive track.  Long term.  This wasn't something we could worry about.  Because he also has a degenerative form of mitochondrial disease, the doctors told us to think of Henry as an 80-year old man - a shortened life span, but unpredictable.

So, we focused on short term.  I got a cake mix to make chocolate cupcakes (he asks for chocolate a lot - which may have a lot to do with our tastes) - with pirate cupcake holders - and sprinkles.  Kristen went and got store-bought cake - with with heavy icing.  Henry asked "Do I get to have cake?"  Our affirmative answer almost brought tears to my eyes before the words left our mouths.  Henry lit up, and started running around.  It meant so much to him.  So, we put candles in, turned out the lights, put him at the head of the table, gathered around, and sang "Happy Birthday."  Henry blew, with all of his might, to put out the flame atop his "4" candle, insisting that he needed no help.  But he did.  He was having a lot of breathing issues this week, and breathing treatments weren't helping a bunch.  He didn't notice that I blew with him, standing from behind.  Though Luke did, he winked at me and didn't say a word.

Then, we dug in.  Just like at any other four-year old party.  Henry kept smiling.  No one said anything when we saw that, though he had cake all over his hands, he had simply taken two licks of icing.  He had taken the cupcake wrapper off of the cupcake, discarding the untouched cupcake and cherishing the pirate holder.  He knew, at some level, that eating the cake and cupcake would make him sick to his stomach.  But, he got to "eat" cake - just like any other four-year old.

Bad parenting?  Poor choice?  Irresponsible?  We don't think so.  It was a big day for Henry!  Well worth whatever anyone outside looking in might think.