“… and when …”
Dateline: The star atop the tree.
You wonder, why the children.
You wonder, why the grandchildren.
You wonder, why the newborn.
… and why not me.
Take me, with your needles.
Take me, with your tubes.
Take me, with the pain.
Take me.
Not them.
Take me.
Not my child.
Take me.
Please.
Just don’t take them.
Just don’t take our future.
Just don’t take our heart.
“… the night …”
But there comes the ill wind for the tiniest amongst us. There comes the wicked for our babies. There comes sickness to the crib.
And it brings with it teardrops on the pillow. And it brings with it a helplessness that consumes us. And it brings with it a question for our soul.
Why?
Between the Why? and the Answer, comes life. It is in the Search, that life is lived. Fueled by the Why, we grow from young to old. Seeking answers, seeking knowledge, seeking peace.
Seeking ourselves.
It was an hour and seven minutes from the end of the interview, to walking through the front door of my home. An hour and seven minutes on the Mass Pike and I-84 West.
An hour and seven minutes of Why?
After 30 some years in the business of mayhem, you harden to the upside-the-head whacks the universe hands out to humanity — the carnage we call civilization.
When it comes to the victims, I tell myself, to escape from the mayhem on my keyboard or that viewed through my lens, that the vic’s have had their time, be it long, or not so much, but they have had their time to laugh, to cry, to win, to lose, to be loved or — more importantly — to have loved.
And then I move on. To survive it, you have to move. Move on. Move on fast and not look back. Never glance over your shoulder. The result of civilization is best seen in the rear-view mirror.
But then came the drive. Then came an hour and seven minutes of Why?
An almost winter Sunday in New England. Toll highways and cold rain. Snowflakes in the headlights. Watches and warnings under the clouds.
It’s best that when you do stories like this, you do them fast. Think fast, type fast, hit send.
Move.
On.
But between me and the keyboard, there came one hour and seven minutes to think. Not good. If you think too much about what you see, about what you are told, the easiest thing is writing the story.
The hardest thing is getting up for the next one. The next story. How many times can you rip your heart out before you won’t be able to put it back? How many times can you bare it all, before there is nothing left to bear?
I can cover the car crashes and still have something left.
I can cover the wars and still have something left.
I can cover sports and still have something left.
I can cover politics and still have something left.
But when it comes to children — and I need to be witness to their hurt, be witness to the bad things done to them, and I write about it from my heart — when I put my heart back, there is a little less of it left.
If you have children, you know what I mean.
If you want children, you know what I mean.
There is a gift this way comes. Amidst all the destruction we do, amidst all the bad things we bring on each other. There is a gift our way comes.
Children.
It’s a gift from the universe that shows us, that while we can be massive jerks, we can also bring beauty, bring hope, bring love to this rock in space.
Through our children.
The greatest gift I have ever received, except for the day I met my wife, was the birth of my children.
A gift I open every time I look into their blue eyes.
A gift I open every time I hear their voices.
A gift I open every time I steal a kiss on their cheeks.
Which is why an hour-and-seven-minute drive is way too long to be alone with a story of a child bouncing around in my head. Too much time to think. Too much time to glance back to the story you just left.
Because this time behind me lies the hurt of a newborn. Behind me, is a baby in pain. Behind me is a 4-month-old baby who almost died on Thanksgiving, saved only by more than five minutes of constant CPR.
Behind me, in an ICU metal crib filled with tubes and needles, lies … Why?
Why the children?
Why her, the infant daughter of Elite Series pro Byron Haseotes and his wife, Tiffany?
Why them?
Why those who have not yet laughed?
Why those who have not yet loved?
Why them and not me, who has?
“… is cloudy …”
The snowflakes smash into the windshield, and the mist from the 18-wheeler becomes a steady fog as the holiday lights in the hills of the Mass Pike become blurs of red, blue and green.
Cruise control on high, steady in the far left lane for 70 some miles, if I don’t have the answer I will outrun the Why?
As the wipers sweep to my right, I see the face of my daughter Ashley. As they sweep back to the left, I see the eyes of my son Jimmy. And in the mist between sweeps, Evi stares at me.
“We call her Evi,” her dad, Byron Haseotes, told me, “But her real name is Evangelia. In Greek, it roughly means ‘the bringer of good news’.”
But for Evi, the good news has yet to come.
Tiny Evi, just turned 4 months old the other day. She is living a life counted in days, so that every tomorrow reached is a victory.
Is a gift.
In the four months that has been Evi’s life so far, only ten days have been spent out of Children’s Hospital Boston. Ten days back home in Centerville on Cape Cod with Mom and Dad and her 2-year-old brother Byron III.
Ten days wrapped in pink, instead of tubes and bandages.
In the four months that has been Evi’s life so far, the last time she was held, the last time she was in her mother’s arms was two and a half weeks ago, as I write this.
“The last time I got to hold her,” Evi’s mom, Tiffany, told me, “I wouldn’t let go … couldn’t let go. Evi had all these tubes and wires connected to her, I was afraid to move, I just sat there with her in my arms talking to her. I just sat there so long in one position that half my body fell asleep, but I couldn’t let her go. Couldn’t give her up.”
Click the cruise control up a notch. An hour and seven minutes of trying to outrace the, Why? I’m making my own tracks in the left lane snow, the race for the Why makes the Mass Pike speed limit only a suggestion ignored.
Through the snow covering the outside driver’s side mirror, I can only see Evi. And inside the minivan I hear the splashing as I plow through the new fallen snow, but it is Byron and Tiffany that I am listening to.
Byron: “You have no idea what it is like to stand there, helpless, and watch your child turn blue.”
I don’t.
I never want to.
I’m the one who should be blue. Not them. Not the kids.
Tiffany: “Evi can go to a bad place real quick.”
And Evi has, several times now, in the four months of her life.
I am not going get technical here because to do so would be to label Evi as this or that disease, or sickness or symptom, and she is not that.
Evi is a baby and a human being worthy of dignity and not labels. But she is also a fighter of enormous strength and resiliency, and after much discussion with Mom and Dad, and with a little bit of conversation in the minivan between me and the universe, I will tell you this about Evi.
Evi was born with ASD — Atrial Septal Defect. There was no wall between the two top chambers of her heart. She was also born with an LPA sling — Left Pulmonary Artery sling — which basically means that her two pulmonary arteries, instead of coming up and branching out into a “T” with one going to the left lung and one to the right lung, both arteries went to the right and then wrapped around her tiny bronchial tubes and pretty much crushed them.
Byron: “An LPA sling is rare, but what it did to Evi’s airways is very, very rare. Because her arteries were wrapped around her airways, the airways didn’t develop as normal. In fact, the airways were the size of the holes of a plastic coffee stirrer … and they would collapse … a lot.”
Tiffany: “We were told there may be only one other child in the world with the same condition that Evi has — the way the LPA sling affected her airway. Evi is painting her own path in life.”
In the short four months of her life, Evi has had numerous surgeries and has been on the heart-lung machine … twice.
“We take 10 steps forward,” Tiffany says while looking over to Byron, “and 20 steps back.”
“It’s like Groundhog Day, DB,” says Byron as he blesses himself and kisses the gold cross he wears around his neck.
“… there is still a light that shines on me …”
Byron and his family have moved out of their home on Cape Cod to a tiny two-bedroom apartment just down the street from where Evi is in the Cardiac ICU. The apartment in downtown Boston came furnished and with a price tag of $5,400 … a month.
Tiffany: “By being here we are able to be with Evi, seven days a week. We switch back and forth, me one day, Byron the next. Go up there around 8 a.m. and stay until 7 p.m. Sometimes I’m just thinking so much about her, worrying so much, that I will get up out of bed at 9 or 10 o’clock at night and walk back down there to be with her.”
Byron told me that Evi could be in the Cardiac ICU until April — another four months.
“You take one day at a time. We are told you have to give it time, but it kills you to just stand around helpless. We just have to watch and wait.” Then Byron blesses himself and kisses the gold cross on the chain.
Tiffany: “Byron struggles with this … struggles a lot with this,” as I look over at Byron he turns his face from me and silently walks into another room. I write that down but have a hard time seeing what it is I’m writing. “I feel completely helpless, too, like a bystander to my child; it makes you feel hollow inside, but the only thing I can do for Evi is to be there for her, be strong for her because I believe she can feel my presence, can hear my voice, use my strength in her battle to live.” And her voice trails off … as does my note taking.
I blast through the 15-mile-per-hour Mass Pike EZPass lane at 40 — don’t care if my EZPASS triggered the green or red light — turn left into Connecticut, adjust the cruise control … up.
As we sat in some sort of Starbucks kind of coffee joint, Byron told me two things that floored me.
One, that for Evi, he was giving up a love that he had tried for his entire adult life to become — a Bassmaster Elite Series angler. “I can’t do it, DB … can’t be away from Evi that long and can’t leave all the caregiving on Tiffany’s shoulders. I called B.A.S.S. and told them I won’t be on the tour this year.”
The gift for Evi, from Dad.
Because what it means, and Byron knows this, is that he may never make it back. To the Elites. To his dream. To do so, he has to come all the way back up the ranks … climb back through the minors, once again, to make the majors. To once again do all it takes to be the best in the world.
“I know, but I can’t leave Evi.” And once again, in a crowded coffee joint, Byron blesses himself and kisses the gold cross around his neck.
Then I ask this, “Dude … how in the world are you affording this — $5,400 bucks a month for a furnished shoe box, and what — five or six months in Cardic ICU before Evi can even get out on the floor?
And Byron looks down at the sugar packets on the table, looks to his left at the snow and rain falling in Boston, to his right at a lady adding non-dairy creamer to her to-go coffee cup and then trying to get the lid back on tight, and then he looks up at me and says, almost in a whisper, “Ah … my family … ah … you know, DB … they own Cumberland Farms convenience stores and, you know, ah … hmm … we also own … ah … Gulf Oil Co.”
I can just look at him.
He just shakes his head, yes.
And then he tells me this: “DB, we are doing OK, very fortunate that I can be here every day for Evi … my family’s business affords me that. But it’s not about the money, it’s about Groundhog Day and how this never ends, the outcome with this kind of stuff is usually never good, no matter how much money you have.”
Byron starts to stir his coffee, coffee that he has added nothing to.
“It kills me, DB. You know, we can’t even hear Evi cry. During one of the surgeries they bumped one of her vocal cords — it’s only the size of a human hair — and she lost her ability to cry. My baby doesn’t cry. There is some noise, but I can’t even hear when she is in trouble … pain … or hurts.”
At this point, they do not know if the condition is temporary or permanent.
“I would give up every dime I have for her not to be going through this,” he says as he continues to stir black coffee, “but she has made me a better dad. Made me live more for the moment — every precious moment with her, my son, my wife. Evi has taught me just how precious life is.”
Byron only gets halfway through blessing himself as his hand stops to wipe his eyes.
And that is the gift Evi gave back to her dad.
“… shine on until tomorrow …”
But there will come another gift from Evi. A gift from one little fragile baby, to all those around her.
“DB, Tiffany and I have talked long and hard about this. We are fortunate that we have the financial means to be here with Evi all the time, but there are tons of other people here with sick children, very sick children, who not only have to face that but also all the financial problems that go along with that.”
And then came the gift that Evi will give to all.
“Regardless of how this all turns out, Tiffany and I are going to make a large financial donation to the hospital to help these other parents with sick children. These parents need to catch a financial break, and we are going to give them one.”
One hour and seven minutes, and I’m finally in my own driveway.
One hour and nine minutes, and I’m in my son’s bedroom. He is away at a volleyball tournament.
One hour and ten minutes and Tiffany is talking inside my head, “I never picture Evi not being with us; I always picture Evi there with us in the future … picture her playing … picture her watching TV … picture her asleep in her bedroom.”
Then time goes backward as I walk around my son’s room, and go across the hall to my daughter’s old room, and I see them as only a parent can … as the infants I once cradled.
And I see them as children around the Christmas tree and realize that Evi gave me a gift as well.
Evi gave me this, showed me the true gift was not the present given to Dad, the gift was the child who handed it to me.
Children are the most important gift that the universe hands out.
Then I blessed myself.
And kissed the cross that hangs above my daughter’s bed.
And wished that some day Evi would sit around the family Christmas tree.
And grow up to be the gift she was meant to be.
“… let it be.”
Let It Be
The Beatles
Merry Christmas,
db
Don Barone is an award-winning outdoors writer and a member of the New England Outdoor Writers Association and the Outdoor Writers Guild of the U.K. You can reach db at www.donbaroneoutdoors.com.