Welcome to Holland

This is an amazing description of how I feel and I wish I could take credit for it!! I'm glad to say that I think I've already "graduated" to part two. I think this not only describes parents of special needs kids, but anyone who's life has taken an unexpected journey.

"Welcome to Holland" By Emily Perl Kingsley, 1987

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.

Welcome to Holland (Part 2)" by Anonymous

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.

Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.

I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.

I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

　

No Rain, No Rainbows

This month marks one year since we were given Spencer's diagnosis. If you would have asked me a year ago where I'd be today, I honestly couldn't have given you an answer. But I know this, I am amazed at how far I've come and that I'm not just okay, I've found an incredible joy throughout this experience. I've matured in ways I could have never imagine, found what's really important in life and learned that life's short (no pun intended.) I've have found a truly spiritual meaning in the saying, "no rain, no rainbows."

I've taken some time to read back over emails I sent around this time a year ago and read the journal I kept in the early weeks. Don't get me wrong it was tough, but even then I had a sense of peace beneath it all.

When I went through my prenatal records and Spencer's birth records, I was angry to find out that his diagnosis was so obvious and yet everyone missed it. I looked for someone to blame and any anger I had was pretty much directed at the medical profession. Over the last year, after hearing the emotional roller coaster so many other families had because they were given the diagnosis prenatally or at birth, has made me realize we were truly given a gift in some ways. By the time we found out about Spencer's condition we had already fallen deeply in love with him and discovered his dwarfism didn't have to define him in a negative way.

The day we were given Spencer's diagnosis though I was up and I was down. I cried and cried some more and that night I didn't sleep much. I got up in the wee hours of the morning and held Spencer. As we sat in our big picture window, the light streamed in and I saw Spence look at me and smile. Yep, still the same old Spence. He was going to be okay and so was I.

Just a few weeks later, we were headed to our first appointment with the Skeletal Dysplasia clinic and ready to get some concrete answers. But we never made it to that appointment. When we arrived at the hospital, we found Spencer lifeless in his carseat. We would later learn he had had a central apnic episode and it nearly took his life. Bam! We were thrown into the not so fun side of dwarfism, the medical complications. Spencer had neurosurgery a few days later and we went through another roller coaster of emotions.

The year went on and so did the rest of our lives. The four other kids were keeping us busy and Spencer's appointments filled in any spare time we had. Somewhere in all of the chaos though I changed. I relaxed, I matured, I loved deeper, I let things go, like unnecessary housework and grudges, I found a confidence in myself like never before and I think I became a better wife, mother, friend, sister, daughter and person.

In all honesty, I don't care Spencer has dwarfism. Really I don't. I feel bad for the struggles and hurts that he'll face in life, but I know I wouldn't be the person I am today without him. And I'm not sure I would have reached the incredible level of joy in my life that I now experience.

I feel like I haven't done justice writing about our experience the last year, but it's hard to describe the changes that have taken place in us, the growth and the peace we have about it all. Bottomline though....no rain, no rainbows.