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.  

“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 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.

My Heart Breaks; Henry's Heart is Just Fine!

Henry and I just got back from his visit to the cardiologist.  It was a quick visit, he had a couple of tests, and is now at home while I do a little work.  

The good news:  His heart remains to be structurally sound.  He has a murmur and low blood pressure, both not biggies.  And he might have an arrhythmia – which wouldn't be a big deal either because the doctor reassured me that they can treat most with medications.  So, he is wearing a little heart monitor for a day or so.

With all of that good news, it's hard to believe that it was one of the most sobering and difficult appointments for me.  Maybe it's just me or maybe I was in a fog of denial because of the sleep apnea and now that I sleep . . . .  Anyway, it was the talk of the future that was difficult.  The cardiologist (and geneticist) put together a plan for Henry, what to look for, what to expect, and when to schedule his next appointment.  They said that we should anticipate that he will have cardiac issues given the severity of his deficiency and since the heart uses so much energy.  That he will continue to need more sleep, may become tired more easily, and may need to rest more regularly.  At some point, they will likely continuously monitor his heart and he might need oxygen (given that his lungs have shown issues and his oxygenation levels fall already).

But, not now.  That's for later.  And something we should be aware of.  For now, the cardiologist (Dr. Jeffries) said it best "this is about quality for Henry – packing as much good stuff in as we can – without going overboard."  So when I asked the question that Henry was dying for me to (could he play soccer), Henry looked up anxiously.  Jeffries, good with kids (or Henry at least), said "well, of course he can.  But Dad, he probably should be goalie or play on one end of the field because that's the most important position."  Henry smiled and looked to make sure that I heard the doctor.  And when he was again entranced in the TV in the room, Jeffries told me that exertion will wipe him out for longer and longer periods.  He's not concerned with his not being able to play for now – just that it will take a toll on him for the days that follow.  We already see that with visits and other fun stuff – but, it is so worth it.

And, Jeffries wants to see Luke again – another echo – probably every 6 months for him.  Older, asymptomatic mito patients get a little more attention, he told me.  They'll develop a plan for him too.

I'm all about planning and setting expectations, but today I just wasn't expecting it.  In looking back, all of the other "things" that Henry has have just snuck up on us.  His G-tube (now G-J tube); we know he'll have that forever.  His steroids/breathing treatments (doc said forever on that).  The medicines, his glasses, regular tests, treatments, and procedures.  Infusions of different medicines, etc.  It's just kind of grown on us.  Never thought I'd be pulling syringes out of my backpack or medical tape out of my pocket – instead of pacifiers or other kid crap.  Guess I would have preferred that the things in the future (heart monitors, cardiac meds, etc.) just grow on us too.  Looking ahead was too difficult today – maybe because I looked farther than Jeffries and team articulated – a place I refuse to embrace.  Never will.

To end with something fun, attached is a pic of Henry eating some black beans at Chipotle.  We love this place.  It's Henry's favorite, as black beans are 1 of 3 foods that he can eat - and Chipotle's are the best.  They are sponsoring a fund raiser for Henry's Hope next week; so, if we didn't love them already (we did), we do even more.  (For more information about the fundraiser, visit www.henryshope.org.)

A Failed Experiment

by Troy P. Foster

When we first learned that Henry couldn’t eat food, it was mostly sad for us.  He was too young to really care.  And, every time that he ate food, he became sick, lost wait, or ended up in the hospital.  So, being no dummy, Henry couldn’t be bothered.  He was more than satisfied “holding” some food or making an “experiment.”  The experiments were very impressive pieces of art, and included every condiment imaginable.  My favorite was a biscuit with tobasco, ketchup and mustard – topped with whipped cream, craisins, and oyster crackers.  All in all, Henry really wasn’t phased by being limited to a feeding tube diet.  Until lately.

In the last year, actually, Henry has grown more and more interested, and more and more persistent, in his desire to eat.  We think that his interest peaked when his younger brother started eating solid foods.  As a big brother, Henry wants to be able to do what Eli does.  Everything.

Henry’s strength – in coping and dealing with his illness – translates, unfortunately, quite directly with his interest in eating.  He has been relentless.  Asking Kristen and I if he can “try something,” in the sweetest of voices – over and over.  His initial requests were met with unequivocal denials.  Soon, we found him in the closet with a mouth full of Oreos, chocolate lining his lips.  Or, that a handful of crackers that he just wanted to hold – would suddenly and inexplicably disappear.  The dogs caught a lot of heat, as did Henry’s siblings – all of them.

In the months that followed, Kristen was the first to break.  I learned, indirectly, when the oldest kids, our self-appointed informants of everything, told me that she had let Henry have a bite of coffee cake from Starbucks.  Then Henry, not doing himself any favors, started suggesting that he and Kristen head to Starbucks alone.  Neither the snitches nor Henry knew that Kristen and I had already talked about her slip, which made her “the” target for all of Henry’s pleas. 

I didn’t want to cave.   Henry was allergic to all of these foods.  And, letting him eat them would cause, without question, long term damage to his gastrointestinal track.  It also significantly increased his chances of developing stomach cancer.   But, as his birthday approached, his requests came at both of us.  They were non-stop.  He is good, and though his persistence is tiresome, it sure makes me happy to see given what he faces every day.

So, on his birthday, I too fell.  Truth be told, he doesn’t really want to eat much – a couple of bites is more than enough.  He wants to be able to say that he’s eating and to taste different things.  On the day he turned 4, he had exactly two bites of cake.  We, of course, let him brag about how much cake and ice cream he ate.

A few weeks later, we were at the Children’s Hospital to have Henry see the psychologist.  He has been asking about things a four-year old should never ask, or at least should never be relevant for such a young guy.  And, the program requires participation in therapy, which is terrific.

We shared our lapses with the psychologist.  I had expected a brief scolding, a reminder of the ramifications for Henry, and suggestion that we work with our therapists about our issues in not letting him eat.  But, not even close.  Dr. Mellon (hilarious and ironic) because Henry asks if he can eat him, shared something different.  He asked us whether we thought letting Henry try foods once a week or once every two weeks would increase the quality of his life.  That, if he doesn’t get sick outwardly with those infrequent “tries,” maybe we could forget about the long-term affects.  What?  I think that I would have preferred to have the conversation that I anticipated.  For me, Dr. Mellon was asking us to accept that long-term is not likely in the cards.  In his office, it felt like giving up.  And, we won’t do that.

When we talked privately, Kristen had a better take on it – as usual.  Team Foster is not giving up, and we’ll keep fighting.  But, if he can enjoy the ceremony around trying something every week or every other week, it would mean so much to him.  And, on balance, if we have to deal with a higher risk of cancer or damage to his GI system, we will.  We hope to have to worry about those long-term issues, but can live like it.  Holding onto that for ourselves, it seemed to me, was very selfish.

So, that week, we began his “taste testing.”  If Henry sits at the meal table and doesn’t beg for food during the day, he got a point.  After seven points, Henry gets to try something.  We let him “redeem” his points on the weekend – so that we could make a very big deal out of it.  And, we did.  All of the kids played a role, offering their favorite suggestions for Henry’s next adventure.  Henry was so pleased, and only went one day without earning a point.

It was a living life in the moment lesson that we embraced.  Something two first-born, conservative parents would never do on their own.  It was worth it. 

Until, Henry started getting sick.  Even with the small amounts of food that he was exposed to, very infrequently, he started getting sick this week.  We have stopped the taste testing, and are sure that he’ll get back on track with his pure formula diet. 

He knows why we’ve stopped; he doesn’t like being sick.  And we’ve modified that rewards to little toys or choice of movie.  Henry is on board with that, but his heart just isn’t in it.  Of course, that’s hard for us to see.  Henry still holds out hope though.  Two days ago, he asked me if I could “magic it so that he could eat any food.”  (The kids think that I am magic – whole different story.)  When I told him that I couldn’t, and expected to have to explain that I don’t have super powers and talk more about him not being able to eat, Henry interrupted me and said “Oh Daddy, I’m sorry.  Tell me when your magic gets stronger.”

He’s still a believer.  Magic, miracles, and things that just make us laugh.  He helps us believe in that every day.  Despite our failed experiment!

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.