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. 

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.

The Leprechauns’ Late Visit

by Troy Foster

Every year, the leprechauns make an appearance at the Foster house.  Of course, they are so sneaky that no one ever sees them.  And they are quite mischievous.  But there can be no mistaking that they have been there, as they leave quite a mess.

This year was no different.  Well, with one exception.  They made their trek, and turbulent tracks behind, three days after St. Patrick’s Day.  And the kids were frustrated.  With each day that passed and there was no sign of the little ones, it became more unnerving.  All of them believed that they had to wear green at night – so they wouldn’t get pinched.  As they ran low on pajamas with green in them, the tardiness was taking its toll on them. 

Then, they got it.  “These leprechauns are so naughty that they will come when we least expect it,” our oldest said with a glimmer in his eye.  His face exuded confidence, hope, excitement, and anticipation.  And he explained, rather convincingly, his theory to the other kids.  They were all in agreement; the fun had not passed them by – nothing would deprive them of their St. Patrick’s Day magic.

Truth be told, Kristen and I had a long week.  In and out of the hospital, back and forth to Cincinnati, working being busier than normal – all left little time for us to prepare our house for the leprechauns’ arrival.  And, as the day came and went, I found myself justifying how it wouldn’t be so bad if the little crazy green guys just came next year and didn’t bother with us this time around. 

The justifying ended when we saw that sparkle in the kids’ eyes.  We were not going to let the business of life delay a magical moment, a memory that would be lost forever.

This morning, the kids came running into our room.  “They came, they came.  And they were crazy,” our two oldest exclaimed.  Boy, were they right.  As I walked out of our bedroom, each of the steps leading to their rooms had gold (plastic) coins on them.  They shined about as magnificently as the kids’ smiles.  As I turned to look toward the living room, it was everywhere.  The most voluminous amounts of the tiniest confetti that I’d ever seen.  There were miniature pots of gold, shamrocks, silver stars, gold coins.  It covered the floor, and made a pathway to the kitchen – where giant shamrocks hung from all of the cupboards.  And, where we later discovered, the leprechauns had placed stickers in the refrigerator.

But we were soon to discover the biggest trick of their 2012 visit.  The kids noticed – almost at the same time as I did.  My once full beard was gone – well, at least on half of my face.  On the other half, it remained.  “They shaved part of your beard, Daddy,” Luke squealed, laughing and jumping up and down.  All of the kids laughed so hard and so long, I thought we were going to need to get out the breathing machine and inhalers.  The fun continued until they left for school, but I imagine we’ll talk about it more tonight.

And probably for years to come.  Even though I know that we’ll be vacuuming up that confetti for a solid year (it is super tiny), it was well worth it.  We have another memory – another fond moment where we laughed together.  I’m so glad that the leprechauns decided to come after all!

We hope that you seize your leprechauns and other memory-creating moments every chance you get.

For other heartwarming stories and lessons from Henry’s Hope, please get Three Candles.  It’s a great read, and proceeds will help sick children.  www.threecandlesbook.com or on Amazon!  (19/20 Five Star Reviews!  And 1 4-Star.)   

Good Times - Really!

by Troy Foster

I’m not even joking.  You’ll think I’m crazy or pulling your leg after you hear about our last few days, but I mean it with all sincerity.

Today and The Day Before

I almost forgot the constant whirring noises of the machines, the bright lights, the doors constantly opening and shutting, and the parade of people coming in and out – just when things get quiet.  But, as I sit here, the familiar sounds of the IVs, heart monitors, and sites of the blinding lights and nurses and doctors asking the same questions as those before them – harken me back to when Kristen and I regularly lived in hospitals.  Today, it’s not Henry, but our little Eli that is sick.  He’s dehydrated, has some stomach things, and is in for observation, tests, and fluids.  Poor little man is sick, but he’s going to be fine soon; I just know it.

We also had a little scare with Eli's Crankaw yesterday.  He was in a car accident that could have been so much worse than it was.  The car wishes that it looks as good as Crankaw.

Last Weekend

Every single member of our family, save me, has been sick with a stomach flu off and on for the last week.  Poor Kristen was hit hard.  So there has been some form of clean up underway at our house at a near constant pace.  Oh, and just in time for our new carpet – that we got a few weeks ago.

Our poor dog, Atticus, has a seizure disorder and that flared up too.  So we have him drugged up pretty good on Valium and Phenobarbital.

The Boys’ Check Ups

Henry and Luke have recently been to the cardiologist and neurologist.  Not terrific news.  Henry’s muscle weakness has gotten more pronounced, and they think that Luke might have an arrhythmia.  Neither of those are critical, but just steps in a direction that we’d rather not take.

So What’s Good?

Now, I’m not going to say that any of this was exciting or something that I hoped would happen.  And, I would probably forgive myself (and that’s saying a lot) for being a bit down, if I was.  But, I’m not.

Maybe I’m crazy, and if that’s what it is, I’ll take it.  However, I like to think that I was open to seeing, and enjoying, the good:

·               Henry, Luke, and I made adventures out of our trips to Cincinnati.  There were secret spies, special lunches, sing-a-longs, and a detour home for a book signing.  The doctors visits happened, and the news is not lost on us.  But, what we all remember is how much fun we had.

·               We’re getting ready for Henry’s Wish trip to DisneyWorld – in between the cleaning.  And when Henry and I went to go get our haircut yesterday, Wendy (a good friend and owner of the shop) said “Keep your money for DisneyWorld.  Let me treat you to something.”  Henry said what I was thinking: “Wow, thank you!”  That was so unexpected, unnecessary, and kind.

·               The way he runs around, you would have no idea that Atticus is having health issues.  He’s enjoying life even though he has some hurdles right now.

·               Even now, as little Eli rests with the medicine and fluid doing its work, I sit here thinking about him, what a hoot he is, what fun he’ll have in DisneyWorld, and even the future.  He’s been cuddly because he’s sick, and extra sweet.  Not things that I would have experienced if things went as I planned today.

·               A good friend of ours is picking up our kids at school, their kids will have fun with ours, and help us out a bit.  People are great.  And it just made me think that we need to get those kids together more often when there isn’t a need.  They are close and no reason not to nurture that.

       My father-in-law, who means the world to so many - is back to doing his paperwork today.  I was so happy to hear that this morning.

 

So, good things are all around.  Sometimes, it seems, we just have to be mindful of them and search a bit harder than other times.  It reminds me of a verse from the Bible that I just read coincidentally – that discussed how we have the choice each day to “choose life” and enjoy it for what it is – that day.  Without worry about the future, dwelling on the past – but enjoyment of today.  Deuteronomy 30:19.

So today – a hard day in a string of challenging ones – I choose life.  And I choose to look at the good, and enjoy what I have today.  I hope that I have the strength to keep making that choice each day.  And remember to do it on the good days too!  If I just take a cue from this kid (pictured below), who could easily choose to be mad, sad, or angry.  But he just keeps on enjoying the good times.