Dear Ellie,
It’s a very important time for our family to reflect today…
February 18 was your brother’s birthday and he died 11 days later on March 1. We have always chosen to celebrate his
life. I know by now that you know
the story well- he was born a year before you (in 2009) and lived for a short
time in the NICU, as he had a spontaneous genetic mutation that was discovered
in week 17 of gestation. The fact
that he lived at all was miraculous but being his Mom, I wanted more… I wanted
him to live as I fell in love with him the moment I laid eyes on him (actually even
before that, when I first felt him kick in church at 20 weeks). I knew that if Kyle were to leave the
hospital, he would be special but that’s all Kyle ever was to us was special-
we loved him for all of his extra needs.
Over the years, I have been given pieces of literature- some
fiction, some non-fiction, some insensitive, some beautiful, and some that have
been helpful in the grief process.
But just recently, our cousin Michelle told me about this poem and it
resonated so much with me. In
fact, since she’s shown it to me in December, I have been rereading it several
times (and perhaps it has to do with my new job working with children who have
developmental delays). For both
reasons, I find it significant, relevant, and emotional (because afterall,
there are so many places to answer, “I know, I understand”):
Welcome to Holland by
Emily
Perl Kingsley.
I am often asked to
describe the experience of raising a child with a disability - to try to help
people who have not shared that unique experience to understand it, to imagine
how it would feel. It's like this......
When you're going to have
a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch
of guide books and make your wonderful plans. The Coliseum. The Michelangelo
David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager
anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says,
"Welcome to Holland."
"Holland?!?"
you say. "What do you mean Holland?? I signed up for Italy! I'm supposed
to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change
in the flight plan. They've landed in Holland and there you must stay.
The important thing is
that they haven't taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different place.
So you must go out and
buy new guide books. And you must learn a whole new language. And you will meet
a whole new group of people you would never have met.
It's just a different
place. It's slower-paced than Italy, less flashy than Italy. But after you've
been there for a while and you catch your breath, you look around.... and you
begin to notice that Holland has windmills....and Holland has tulips. Holland
even has Rembrandts.
But everyone you know is
busy coming and going from Italy... and they're all bragging about what a wonderful
time they had there. And for the rest of your life, you will say "Yes,
that's where I was supposed to go. That's what I had planned."
And the pain of that will
never, ever, ever, ever go away... because the loss of that dream is a very
very significant loss.
But... if you spend your
life mourning the fact that you didn't get to Italy, you may never be free to
enjoy the very special, the very lovely things ... about Holland.
As I researched the above poem more, I came across a blog…
from a parent of a child with special needs who felt like the entry into
Holland in the initial poem was glossed over. So she added a preface (which probably was necessary,
especially with cases like Kyle when the time in Holland is cut far too soon):
Parents of “normal” kids who
are friends with parents of kids with special needs often say things like “Wow!
How do you do it? I wouldn’t be able to handle everything---you guys are
amazing!” (Well, thank you very much.) But there’s no special manual, no
magical positive attitude serum, no guide to embodying strength and serenity .
. . people just do what they have to do. You rise to the occasion, and embrace
your sense of humor (or grow a new one). You come to love your life, and it’s
hard to imagine it a different way (although when you try, it may sting a
little). But things weren’t always like this . . . at first, you ricocheted
around the stages of grief, and it was hard to see the sun through the clouds.
And forget the damn tulips or windmills. In the beginning you’re stuck in
Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the
plane into the airport thinking
“There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”.
The airport is covered with signs in Dutch that don’t help, and several
well-meaning airport professionals try to calm you into realizing that you are
here (oh, and since they’re shutting down the airport today, you can never
leave. Never never. This is your new reality.). Their tone and smiles are
reassuring, and for a moment you feel a little bit more calm . . . but the pit
in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it
yet, this will become a pattern. You will often come to a place of almost
acceptance, only to quickly re-become devastated or infuriated about this goddamned
unfair deviation to Holland. At first this will happen several times a day, but
it will taper to several times a week, and then only occasionally.)
A flash of realization---your
family and friends are waiting. Some in Italy, some back home . . . all wanting
to hear about your arrival in Rome. Now what is there to say? And how do you
say it? You settle on leaving an outgoing voicemail that says “We’ve arrived,
the flight was fine, more news to come” because really, what else can you say?
You’re not even sure what to tell yourself about Holland, let alone your loved
ones.
(Although you don’t know it
yet, this will become a pattern. How can you talk to people about Holland? If
they sweetly offer reassurances, it’s hard to find comfort in them . . .
they’ve never been to Holland, after all.
And their attempts at
sympathy? While genuine, you don’t need their pity . . . their pity says “Wow,
things must really suck for you” . . . and when you’re just trying to hold
yourself together, that doesn’t help. When you hear someone else say that
things are bad, it’s hard to maintain your denial, to keep up your
everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to
home, and you can’t admit to yourself how terrible it feels to be stuck in
Holland, because then you will undoubtedly collapse into a pile of raw, wailing
agony. So you have to deflect and hold yourself together . . . deflect and hold
yourself together.)
You sneak sideways glances at
your travel companion, who also was ready for Italy. You have no idea how (s)he’s
handling this massive change in plans, and can’t bring yourself to ask. You
think “Please, please don’t leave me here. Stay with me. We can find the right
things to say to each other, I think. Maybe we can have a good life here.” But
the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw
misery, of saying it out loud and thereby making it reality, is too strong. So
you say nothing.
(Although you don’t know it
yet, this may become a pattern. It will get easier with practice, but it will
always be difficult to talk with your partner about your residency in Holland.
Your emotions won’t often line up---you’ll be accepting things and trying to
build a home just as he starts clamoring for appointments with more diplomats
who may be able to “fix” it all. And then you’ll switch, you moving into anger
and him into acceptance. You will be afraid of sharing your depression, because
it might be contagious---how can you share all of the things you hate about
Holland without worrying that you’re just showing your partner all of the
reasons that he should sink into depression, too?)
And what you keep thinking but
can’t bring yourself to say aloud is that you would give anything to go back in
time a few months. You wish you never bought the tickets. It seems that no
traveler is ever supposed to say “I wish I never even got on the plane. I just
want to be back at home.” But it’s true, and it makes you feel terrible about
yourself, which is just fantastic . . . a giant dose of guilt is just what a
terrified lonely lost tourist needs.
Although you don’t know it
yet, this is the part that will fade. After you’re ready, and get out of the
airport, you will get to know Holland and you won’t regret the fact that you
have traveled. Oh, you will long for Italy from time to time, and want to rage
against the unfairness from time to time, but you will get past the little
voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find
their own way out of the airport. Some people navigate through the corridors in
a pretty direct path (the corridors can lead right in a row: Denial to Anger to
Bargaining to Depression to Acceptance). More commonly, you shuffle and wind
around . . . leaving the Depression hallway to find yourself somehow back in
Anger again. You may be here for months.
But you will leave the
airport. You will.
And as you learn more about
Holland, and see how much it has to offer, you will grow to love it.
And it will change who you
are, for the better.
No matter how many times I read either poem, I keep coming
away with the same conclusion… Despite being so thankful for even having 11
days in Holland, I just wish I had more time to spend there.
I love you Ellie, just as I loved your brother.
Mom