“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 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. 

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.)

Henry's Lesson

by T. Patrick Foster

(Below is an excerpt from my upcoming book "3 Candles."  I hope you enjoy.)

Henry’s first months with us were absolutely “normal.”  His mysterious illness in the hospital was nothing more than a scary blip on the radar once we got him home.  It disappeared as quickly as it came on.  They let us take him home.  He was breastfeeding, gaining weight, passed his infant screening tests – all very normal.  Henry had an older brother and sister to get acquainted with, and we wanted to spend time with our new addition.  So, with everything seeming copasetic and with a lot on our plates, Kristen and I gave almost no thought to Henry’s first days.

Almost.  Or, so it would have seemed from the outside.  But, like most parents, we are worriers.  Speaking for myself, I long worried about things that I thought might happen – rational or not.  So, completely forgetting about something that did happen and not worrying about the future was not in my make up.  Kristen’s either.  Our concerns didn’t get “air time,” as neither of us discussed them.  There was really nothing to say.  Early on, he seemed just perfect.  So, to talk about “what ifs” without a symptom or a reason – was just asking for trouble.  A truism in my universe about virtually everything.  I had enough trouble to deal with – without asking for more.

Though we didn’t talk “what ifs” with each other, my mind raced with them.  I was used to going through scenarios, possible problems, potential outcomes, and plans to protect from the worst.  I did that as a child, not appreciating that I had little, if any, true influence on the outcomes in most situations.  Then, I entered a profession where this process was my focus, where there were rules that I could master, and have a much more direct effect on outcomes.  This control, influence, and level of predictability felt safe for me – much less volatile, and more fair, than what I was used to.

So, it was natural for me to carry this practice with me to my family.  It had served me well, so I thought, up to that point, and it’s what I knew.  What I wasn’t prepared for was that the lack of control, lack of influence, and sometimes utter unfairness would return with a vengeance.  Unlike in my law practice, there were no rules.  Things didn’t have to make sense.  They could be unsettling.  And the flow charts more voluminous and complicated.  Non-sensical even.

It could also become overwhelming.  At any one time, I had several flow charts streaming through my head – each with different problems (virtually none of which materialized), several potential solutions for each, and all of the potential outcomes.  Sometimes it was paralyzing.  Not in that I couldn’t make a decision or take action, as I always was decisive.  I had to be.  Indecision proved dangerous, and picking a path was a way that I was able to exercise some control, or a sense of it – even when I chose what turned out to be the wrong path.  So, the paralysis wasn’t indecision; I was racing through the flow charts in my head – making serious and thoughtful decisions – without hesitation. 

The paralysis was my inability to enjoy what I had right before me.  I had three relatively healthy and loving kids, a beautiful and supportive wife, professional success, and the means to support my family and spend time with them.  When I read it now, or looked objectively at it then, being overcome with worry and anxiety just didn’t make rational sense.  But with fear, rationality goes out the window.  I learned that it can overtake us.  Any of us.  And that doesn’t mean that we don’t love our kids, our spouse, or the blessings that we have.  I did.  It just means that the fear of losing it – those things that are most important to us – can overshadow what we have.  The flow charts in my head did. 

Instead of enjoying what I had, I was planning how to keep it, and preparing myself for losing it.  To some extent, we all do that.  Those that have lost loved ones, or are living with them through illness, engage in this exercise.  Those that have been abused – in any way, shape, or form – understand the constant planning – for self preservation.  Those of us that have ever struggled with self-confidence issues also inject “worthiness” into the equation.  All of this makes it difficult, if not impossible, to truly and graciously accept the gifts we have right now.

 Struggling with this is something that we all do – regardless of our backgrounds.  Conquering it, on the other hand, is a difficult challenge that few of us ever accomplish.  I’m proud to report that Henry helped me gain the perspective, and live it.  It took my son, who had a more balanced perspective on life than anyone that I have ever met, to teach me this important lesson.  To teach me that the here and now is what’s important.  To teach me that laughing, crying, and showing the feelings that we have now is living.  To teach me that we don’t have control over much of anything.  And, that’s okay.  But, we can control how we choose to live each day.  We can choose to get rid of the flow charts and not let fear control us.  We can choose to really live life to the fullest. 

The irony is thick.  That this very big life lesson can be so clearly and cogently taught by a little boy who has been stricken with a rare and terminal disease, by a boy that has everything to complain about but doesn’t – and instead chooses to laugh, smile, and see the bright side of everything – is powerful, humbling, and nothing short of divine.  Taught by a boy that has less time than most of us will to spend on Earth, but will undoubtedly live more life than most.

So, though there were no significant symptoms to worry about in those first few months, the internal storm was fierce.  And, even then, we became eager students.  I’m glad that we paid attention because, as is apparent, there were real medical storms that we’d face.  But with Henry’s example, Kristen and I learned how to ride the storm out, appreciate every minute, and keep fear at bay.  Our greatest fear became not living life to the fullest.  So, we did.  And, so can you.  Just listen to Henry!