No. 3 – Welcome to Holland

It’s important for me to say while we’re doing our best to focus on the good and trust God’s plan, it is not all sunshine and rainbows. Some days are just plain hard. Days when we’re concerned he’s getting sick and wondering if we’ll be in the hospital by the end of the week; when date nights are a thing of the past because Miller requires more care and precaution than a typical kiddo; when his therapy schedule is overwhelming; when we learn we have to find a different daycare because the current situation is perhaps no longer a good fit for his needs; when our kiddo misses sleepovers or weekends with his cousins; or watching Miller get a kick out of other kiddos running and playing around him and wishing with all my might he could do the same.

It can be hard. But so far, nothing compares to the first few weeks after his diagnosis. A fellow mito mom sent me a progressive essay and it describes my feelings so accurately:

“Welcome to Holland” by Emily Perl Kingsley, c1987

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.

We didn’t sign up for Holland, but we’re doing our very best to find the joy in it. We have the bittersweet situation that allows us to be mindful, to soak up every day with our miracle boy, and celebrate every inchstone.

Miller Man is tested out a tricycle at West Texas Rehab and did pretty well! He was pretty focused. 😉

As our little blessing sleeps soundly in his bed, I’m grateful for a wonderful weekend with our tribe celebrating birthdays, new additions, and friendship.

I hope you have a blessed week!

Jac