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 5th 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.
