Welcome To Holland

This was written by Emily Perl Kingsley in 1987. There is no better way to describe the experience of becoming the parent to a child with special needs:

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.

Keeping My JOY When Family Life is Difficult

I have been thinking a lot about joy lately. JOY. That’s not a word used very often today. We talk about being happy or good. “Yeah, I’m good.” But joyous? Doesn’t the word ‘joyous’ evoke something different inside you? When I think about how it is to be ‘joyous’ I feel like it’s something I really REALLY want; like it’s more than just being happy or content or fulfilled. Like it’s all three of those things plus more.

My emotions can be so up and down. One week, I feel empowered, optimistic, strong. I conquer the world, take care of the kids - one in a high chair and helpless, the other in a wheelchair and helpless - feeding them breakfast, lunch & dinner; entertaining them; developing lesson plans for home-schooling while on summer break; giving infusions and administering medications; scheduling all the doctor appointments for all the various doctors they each have. I cook; do the laundry; go to the grocery store; I try to be a good wife, a good friend, a good daughter.

Then, in a matter of a moment all of that rolls down the drain like dirty bath water and I am overwhelmed, feeble, exhausted. I can’t fathom getting organized enough to make myself coffee let alone getting breakfast going for the two of them. And then, when I have the both of them crying and needing my attention…? It’s all too easy to get sucked into the depressing role of the harried mom who hasn’t had a chance to shower, one needy baby on the hip, the other wanting to eat (but mom needs both hands free to feed her), the kitchen sink full of dishes and no food prepared for dinner for when hubby gets home from a long day’s work.  Just re-reading that is exasperating.

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In 2007, I went through my “religious revolution”. I grew up catholic, went to catholic school K-8^th grade, went to church, had my baptism, communion & confirmation like a good girl. After middle school we pretty much stopped going to church except for holidays but we were still believers, Pope-sters. But then, my daughter happened. A very uneventful pregnancy turned into a Nightmare on Hospital Road (the hospital she was born at is actually on such named road!). My just-barely-under-the-radar anger I had developed starting around the age of 15 or so exploded and I was on the attack against anyone, including God Himself. Oh, I cursed Him; hated Him. How could He let this happen?? What did I do?? What did SHE do??? Why, why, WHY?!? Long story short, I was very hateful and bitter and most of all depressed. A very deep and very real depression settled over me. It came in fast and furious, whooshing dust and dirt up around me in filthy clouds and like a betrothed lover, never left my side. It engulfed me. I walked this earth in the middle of this foul bubble; everyone could see me and I could see everyone else but I always had this grimy lens to look through. I always felt out of place. I would hear people laughing and see them having fun but I felt like I was juu- u- u-ust out of reach of having that for myself. This bubble would not let me out!

Then I finally opened the door to Jesus. He had been knocking and knocking, patiently waiting for me. And I felt brand new. Like a whole different person, truly. I wonder still how in the world did I survive all those years with so much pain in my heart. Truth be told, I almost didn’t. There was a close call in the middle there. But here I am still.

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And I want to be joyous! I want to figure out a way to feel that joy as much as possible. During those “Why ME?!?” moments that can sometimes stretch into hours and days, I want to know how to find that joy. In John 16:22 we read that no one (or no circumstance) can take our joy from us. In other words, my life doesn’t have to work out the way I planned it to in order for me to be happy. Having two children with life-long chronic medical issues is upsetting, and there will be times that I will feel overwhelmed, but do I have to let it take my JOY from me? Can I let it go?

That’s a huge endeavor I’m asking of myself: let it go. Submit to God, bring my worries and anxiety to His altar and leave it there for Him to take. I think writing this is a beginning to me being able to do that. I work it out in my head and put it down on the proverbial paper. I also get some feedback from some of you and it’s a beginning.

So thanks for listening.