Welcome to Holland

Welcome to Holland

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.

– Emily Perl Kingsley

 

This poem spoke to me more than anything else I read when we first got Eliza’s PWS diagnosis. It was such a shock, and it was so hard for me to embrace the new journey without mourning the loss of the one I had planned. And to be honest, for a time I couldn’t even bear to be with my friends who had just arrived in “Italy.” I was so jealous, and it hurt so much! But the thing I love about it most is that it speaks to the beauty and wonder that comes with this new adventure. I can truly say that the eleven months since Eliza was born have been filled with both the deepest despairs and the deepest joys. They have come hand-in-hand and have been carried along with a love I had never before known.

Eliza has expanded my village and stretched my heart. She has introduced me to some of the kindest and smartest women I have ever met throughout her weeks in the hospital and also opened my eyes to the people and blessings that have been there all along. Hard times so often bring out the best in us, and they almost always bond us to a sense of community that is quite simply astounding. They shift our perspective to the eternal but also to the present, and that is such a gift.

But while I do love “Holland” as Kingsley puts it, I also still grieve for Italy. Even now. It’s not an everyday thing, but there are still moments when the grief overcomes me again…when I’m angry and jealous and just really, really sad for all the struggles Eliza has had to face and will have to continue to face in the future. And I believe Kingsley when she says that a part of that will never, ever go away.

I suppose like any unexpected detour, the magic happens when you accept that while the plan has changed, you can still appreciate your company and open your eyes to an adventure you hadn’t expected…when you can listen to the still small voice inside you and trust that while you may not have known it at the time, this journey was laid out for you long ago and with lots and lots of love. That you can bring friends, get lost, ask directions, and forge your own path. And that you can listen for the gentle breezes whispering sweet reminders that you are exactly where you are supposed to be!

But it also reminds me of something else: this journey we are on is temporary, and what follows is eternity in a place far better than Italy…far better than anyplace we can imagine! So in the meantime, I hope I can soak in all there is to see and leave a footprint for future travelers that speaks to the very special, very lovely things awaiting them in Holland.

 

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The stars that shine when darkness falls

“Mama!” he cried. “Why, oh, why is the night so dark?”

Mama snuggled close, and then said, “So the stars can shine their twinkling light. That’s why the night is, oh, so dark. Now it’s sleepy time, little duckling.”

Then Little Quack shut his eyes…and went to sleep.

– Little Quack’s Bedtime by Lauren Thompson

Amelia picked this book for bedtime last night, and although I’ve read it dozens of times, its closing pages resonated with me in new ways. Darkness in our lives often closes in when we least expect it, but it carries with it a new perspective. The stars are there all the time, but we only see them when night falls. And when we do, they mesmerize us, leaving us in awe and reminding us of the tremendous expanse of the universe in which we get to make our own marks. It reminds us that we are all connected, that we all sleep under the same canopy of twinkling lights.

Exactly eleven months ago, we found ourselves unexpectedly in Room 8 of the NICU we would live in for weeks to come. It was without question the darkest time in our lives, full of fear and a deep, deep sadness that seemed to cover everything in our world. I remember those days and the darkness that pervaded them so vividly. I never knew that kind of fear and helplessness. But I also remember the stars…the beacons of light and love that shone from all around us…our family, our friends, our community, and our church. They had been there all along, but I had never experienced the depth of that love until I had truly been in the depths of despair. And like the stars in the sky, it left me in awe. It still does.

And here is what I’ve learned: darkness is inevitable and often terrifying, but it is also a lens from which we can witness the glory of the heavens. We could not see the stars if the sun were always shining. And so I hope that I can allow it to enter into my life when those moments come (and they always do). Because it is a gift in its own way…one that stretches our hearts open wider and lets the twinkling light of love shine through. Because it reminds us of He who created the heavens and the earth.