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.
Holland is ugly. Holland is full of storms, full of disappointment, full of obstacles, full of fear. But Holland is also beautiful. Holland is full of rainbows, full of tiny successes, full of hope. Holland isn’t always fun, heck, Holland is rarely fun. But Holland is, in so many way, far, far richer than Italy. I’ve been to Italy. I go there every day with Small 2 and Small 3. There’s not a day that goes by where I don’t wish I was there with Small 1 as well, but I know that she is meant for Holland, that her heart, and her spirit, are too big for Italy.
We have no map for Holland. We’ve tried out a few, but none were quite right. I so wish for a map, for a plan, for answers where there are only questions. Here, in Holland, I find our way by following the scenery, letting it lead us where we need to go, struggling to alter it, change it, overcome it, and sometimes even ignore it. After many years of fruitless searches, I gave up looking for a map; we came to a point where the scenery would be the same, regardless of the route. We are fortunate, for our scenery is not as challenging as that of some other people we have met here in Holland. For this, I am ever so thankful. Yet our scenery is different enough that we are here, and not in Italy.
In the midst of all the beauty of Holland, surrounded by windmills and cobblestone roads, stands my little girl. She is looking at me for direction, and instead of having the answers she needs, I myself am lost. I cannot pick her up and spirit her away to Italy, much as my heart yearns too. I cannot shelter her, hide her underground and convince her there is nothing but Holland, that there is no such thing as Italy. She knows. She sees Small 2 and Small 3 enjoying Italy every day. We have crossed that bridge, the bridge of realization. Small 1 knows she is not like all her friends, not like her brother and sister. Some days, I want nothing more than to go back to the days when the only explanation she needed was “Your muscles are special. They don’t work quite like other kids’ do”. On those days, being a parent in Holland sucks. It sucks big, hairy, smelly, old man balls. There is nothing pretty about telling your child that this is her reality, and that you, her mom, her hero, her "fix it" person, cannot fix this. It is ugly, and it sucks, and nothing you do can change that.
Some days, too, I wish her heart was just a little bit smaller, that she wasn’t as brave, as determined as she is. While she fills me with pride every day, she also breaks me. She is convinced that she can get to Italy, that if she tries just a little bit harder, she’ll make it through airport security, and be on that plane. I break, and she breaks, a little more every time she gets turned away at the gate. It pains me to see the dawning realization in her eyes, as she slowly becomes aware that she may never get to go there. She will hopefully, eventually, end up in a part of Holland that looks a lot like Italy, that feels a lot like Italy, where she can live and laugh and love as if she were in Italy, but the reality will very likely still be part of Holland.
The very best thing about Holland though? The love. Thank God for the love. There is more love in Holland than one could ever imagine. It mixes with the tears and fills up the canals, rolls over the dikes, falls from the sky like a gentle rain. Everywhere in Holland, there is love. The love is what makes Holland bearable, just as it is love that makes any place home.
As a parent in Holland, there is love to give us strength, but sometimes no amount of strength that can make Holland bearable. Sometimes we are given baggage that we cannot carry, loads that we cannot shoulder alone. Sometimes we break. Lots of times, we break. And when we break, there is more love, love to mend us, to heal us, to pick us up off our feet and help us carry on. Love to once again see the beauty around us, to see the wonder that is Holland.
Today, I'm particularly greatful for this breaking love. It won't take us out of Holland, but it makes it easier to be there.
((hugs)). Thankfully, Gage hasn't asked to go to Italy yet, but I know its coming and it breaks my heart.
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