Holland

After hearing the news about Vivian's heart, I sat in my hospital room. My midwife popped in to say hello. She didn't know the news yet. One look at her kind eyes and I fell apart. Though that implies that I was together in the moments before her arrival, and I wasn't. I was a sad, broken-hearted mess.

I managed to tell her the news. I'm certain my eyes were red and puffy. I know there was snot on my face. She sat at my bedside in her characteristically calming way, rubbing my hand in hers, and told me a story. It was a story about going to Italy. In the story, I boarded a plane with my bags packed, tour guide book earmarked, thoughts of Venice and Florence and gelato floating in my head. But on the way there, I found out I wouldn't be landing in Italy. The plane was going to land in Holland. Not what I'd planned for or packed for, but still, Holland is a nice place. So I'd buy a warmer sweater, maybe a raincoat, and instead of Venice's canals, I'd be walking along Amsterdam's.

As Olga told me this story, I thought, What I'd give to be anywhere but this stuffy hospital room. I would give anything to really be in Holland, right now, with my whole life in front of me. My mind took me back to my visit to Amsterdam seven years earlier: the Van Gogh museum, coffee with milk at a canalside cafe, the Pancake House for dinner (both nights), french fries with curry ketchup, that park...what was it called?

But I wasn't in Holland. I was in a hot hospital room with a view to a garden I could care less about and a baby who should still be cooking in my belly. A baby who was in the hospital's NICU with a little heart unable to support her life unless she underwent major surgery. How in the world did I get here? I don't want to be here. I was in a place I had never planned on going.

I didn't know then that the story Olga told me is the anthem for the special needs world, a story written to explain what it's like to be on a different path than you expected. Of course, I didn't know then that Vivian's heart was just one of many issues we'd be dealing with, and I would understand this story on an even deeper level in the not so distant future.

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One morning this spring, with Vivian's heart surgery behind us, I spoke to a friend on the phone. And I started crying because it hit me. Her heart was fixed, but now what? What about her eyes and her hearing and her gross motor skills and her mind and her nose and her eating and, and, and...? It was overwhelming to have gotten through something so monumental as major heart surgery and still have so much left to deal with. Stuff that couldn't be fixed with surgery.

My friend asked me to hang on - there was something she had just read, and she wanted to share it with me. She came back on the phone and read me the Holland story. We both cried quiet tears, she as she read, and I as I listened. I needed to hear it, and I needed someone who didn't live it to understand what it might be like.

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If you haven't read the story "Welcome to Holland" by Emily Perl Kingsley, I posted it below or you can read it here.

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One day a couple of weeks ago my google reader listed a blog in its suggestions, which I randomly clicked on, one handed, as I fed Miss Vivian. That click took me to the words of Jennifer Graf Groneberg, who wrote a book titled Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome. Of course, the title caught my eye: Holland.

I have just devoured this book. The author's words describe such a personal experience and yet I found myself saying Yes! Oh, I get that. I remember thinking those exact words in my own brain! I highly recommend reading this beautiful book. And her lovely blog Pinwheels.

This was one of my favorite passages:

Then Avery makes a new sign, one we’ve practiced, but I haven’t seen him do on his own before. Swinging side to side, hugging himself, back and forth, proud. He’s saying, baby.

That’s the sign I want to use to tell [my friend] what it’s like being Avery’s mom. Big love, big joy. Let go. Hug yourself and swing your body and smile and expect that the world will receive you just as you are, and it will. It will because you make it so, with all your heart and your whole body, smiling, swaying back and forth so fast and pure that the surety of it makes you dizzy. (p.213)

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There are moments, minutes, now and then, when I long for the typical.

Moments when I long to not know hospital life; long to not manage appointments with eight specialists and counting; long to not have our play interrupted by the need to do this exercise or that one, put the hearing aid in - in - in, patch the eye...

But those are just moments. The other hours and days and weeks and months I don't wish it away.

Being on this different path, being in Holland, makes me wonder: Would I be savoring my life as a mother as much if my experience were typical? I'll never know, but I don't think I would be. I would never have wished for Vivian to have these challenges, but at the same time, I can't imagine her being any more perfect or wonderful than she is. She is the perfect baby for Vince and me. She brings happiness and joy to so many.

So we're in Holland. And it's really quite lovely.