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

By Troy Foster

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

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

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

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

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

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

And then . . . .

My kids challenged me even further!

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

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

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

And Luke Took it Even Further

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

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

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

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

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

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

Giving Up On Debates for Lent!

By Troy Foster

Another debate on Ash Wednesday – really, is that what we needed?  Is nothing sacred anymore?  I got up this morning, remembering that we’d get to take the kids to church this evening.  Luke and Lily are at the age where they get what it’s about, and Henry – though not at the age – seems to get everything a little early.  So, I had a smile on my face first thing.

I enjoy the Lenten season, but an added bonus this year – Henry getting his ashes.  And understanding what it means.  So, we had the “talk” after dinner.  By this time, it was obvious that we were going to have to split up.  Our youngest had no interest, and Lily was checked out too.  It was Luke, Henry, and I.

The conversation on the way was the best.  After clearing up that the ashes were not from a burnt trash bin we saw earlier, the kids talked about what they wanted to do.  Henry “I love God so much, and I’m going to pick up trash all over the world and make people love Jesus.  Okay, Heavenly Father?,” he asked as he looked up and hands clasped together.  “And you need to stop drinking Diet Cokes, Daddy.  Not just for the 40 days.  If it’s something we shouldn’t be doing anyway, you think God wants us to start it up again?”  What is this kid a preacher?  Anyway, it was fun.

After we got our ashes, Henry pulled my hand to the pew to kneel and pray.  All three of us did.  It was awesome, cute, and spiritual.

Then, as we’re driving home, I remembered that there was a Presidential debate.  Having worked in national politics, I am the geek that watches these things, the State of the Union, and everything else political.  But honestly, I’ve grown tired of them.  It would be different if there were substantive discussions and genuine disagreement about the issues.  Instead, the pre-planned barbs that are planted in the most inappropriate places, making them transparent, the personal digs, and the “sky is falling” tone taken by each if any of the others were to be elected as if he is the only choice – have all become too much. 

The utter lack of civility and respect isn’t presidential.  And on Ash Wednesday – is certainly ironic.  So even before we pulled in the driveway, this political junkie gave up a second thing for Lent – the debate.  I’ll go ahead and end the day on a high note – getting ashes with my sons and even being lectured about my Diet Coke habit.

If you want to read more inspirational and uplifting stories about Henry and his terrific perspective, check out Three Candles (www.threecandlesbook.com.).  It’s a good read and getting rave reviews.  Part of the proceeds go to Henry’s Hope (www.henryshope.org), a foundation inspired by Henry to help sick and terminally ill children.  Henry has a rare form of mitochondrial disease, which is degenerative - but his spirit and attitude will never rest.

No Bread for Henry, or Me

by Troy Foster

Bread – as in body of Christ, that is.  Don’t worry, I’m not going too deep here.  Just a self-realization that I came to a few weeks ago.

As a family, we attend church each Sunday.  While each of us has our own dilemmas with faith, from time to time, we’re no different than anyone else in that respect.  And we enjoy going to service, and our church community.  The kids have great friendships there, are learning about tenants of our religion, and are in a place where they can ask us questions and begin to form the foundation of their personal relationship with God.

But, there is one thing that I do not enjoy.  And that’s communion.  It used to be my favorite part of the service, and I really looked forward to it each week.  Before attending our current church, I was a faithful Roman Catholic – so, I worked hard to be able to receive communion.  Communion was a spiritual experience, a time that I felt truly closer to God.  At peace and happy.

Communion is a little different for me now.  And, it’s completely my fault.  Though communion is an open table at our church, I remain planted in the pew.  Others seem to be experiencing what I once enjoyed so much.  I just sit and watch.  Watch, as if in protest.

You see, Henry’s mitochondrial disease and eosinophilic disorders prevent him from taking communion.  He is allergic to the bread and the juice.  Yet another thing that Henry is excluded from.  Something else to be different about.  And, it would seem that communion, of all things, should be something that the little guy should be able to partake in – if things were fair.

But they aren’t.  And mind you, Henry does not care.  He barely knows what communion is.  And, I don’t think that my “protest” is some misdirected anger at God.  I know that there is no spiritual soup Nazi that is doing this to Henry.  I think that I stay seated because I want to publicly (though silently) cry out for Henry; as I join his team in not eating the bread, I am one less person that makes him different.  It’s definitely not a choice between Henry and God.  In fact, I have felt closer to God since Henry was diagnosed than I had in years.

And in keeping my seat, I don’t forget what the time is about.  I’m very mindful that it is the time that we thank God for his sacrifice, and I do thank him for it – just without the bread and juice.  But also during communion, I’m saying a prayer for my little Henry.  Hoping that God will find his own special way for Henry to give the same thanks.  I’m sure that he will.  Because even though life, and the world, aren’t always fair.  God is.

Though I know my protest is a meaningless symbol of my love for Henry, I won’t judge myself for being a little childish in dealing with my feelings on this.  I know, with every fiber in my being, that God understands.

Just Say Something

by Troy Foster

In a nutshell, that’s my advice to any of you that have a loved one (friend or family member) that is hurting.  It sounds like common sense, but you would be surprised.  Along with my experiences, two friends going through their own junk drove this point home this week.

Think about it.  None of us want to see someone that we care about enduring pain – physical or emotional.  Most of us want to make it better.  And know that we can’t.  Most people want to say something, but are petrified that they will say the wrong thing.  That their words will be inadequate, taken the wrong way, or seem cliché or trivial.  And some people (more than you might think) feel so uncomfortable with the depth of the issue, they avoid you altogether.  Until you are all better.  They’ll self-justify.  You are strong.  You’ll make it just fine; he/she doesn’t need my help and they don’t need a distraction.

From our own experience, I can relate that it is all misguided.  When we found out that Henry had mitochondrial disease and learned that it was degenerative, the silence was deafening.  Friends that we had known for years – some that we hung out with regularly – had no reaction.  Said absolutely nothing. 

And some, many fewer, but quite a few were no longer in our lives.  It was gradual.  No more invites out from couples.  No more play dates with the kids’ friends.  No more phone calls from some friends that would call regularly.  We had made concerted efforts not to talk about Henry, his condition, or our feelings in social settings – so, I knew it wasn’t that we were bringing down the party spirits.  Now, I’m not that fun in the first place – so maybe it was coincidentally when that was discovered.  But in all seriousness, even though we didn’t say anything, some people were reminded of this uncomfortable subject by our presence.  I’ve since read about this, and how it happens subconsciously with many folks.  And, I get it.

But, it’s still lonely.  When we found out that our older son had the same disease as Henry, our reach of friends was substantially less.  Safe to say that many “close” friends three years ago may not even know about Luke’s diagnosis.  For the avoiders, our friendship probably wasn’t a good match.  And, we have been brought into circles of different folks that aren’t afraid that our sons are sick.

For those that don’t avoid, there is hope.  Say something.  Anything to your friend or loved one that is hurting.  Your fears that it will be inadequate and won’t make things better are probably right on some level.  Your words will not, in all likelihood, erode the pain.  But, the very fact that you said anything – however inartful – means so much.  It says that you are thinking of them.  You are on their team.  They have someone there – no matter what happens.  It can mean all the difference in the world.

I’ll end with a quick example that happened this week.  In the ups and downs that we all have, this week I’ve been a little down.  Worried about little Henry.  Concerned about what will happen.  Wondering if I’m doing enough – for him and the rest of the family.  It’s all natural, and I’m not beating myself up for having those feelings.  Sucks, but it is what it is.  I don’t talk about it much (outside of my therapist – who makes every dime I pay her).  But a friend said to me, completely unsolicited, “you are a good dad.”  The same friend will randomly ask me how I am, or tell me that he admires my strength.  And another friend, who is less comfortable saying things so directly, tell me the most random stupid stories when I’m down.  I know what he’s doing.

Saying something means so much.  Don’t worry about what you’re saying or how effective you think it will be.  Just say something.  It will mean so much.