Thursday, March 17, 2011

Our New Normal

I have always wanted to go to Italy. Seriously. Ever since college I thought it would be fantastic to visit Rome. The history there would be incredible. Granted, I have heard its pretty dirty and Venice canals are pretty mucky. But seeing the sights would have to make it all worth it. Right? Who wouldn't want to go to Italy?

But it will be a long time before I can consider traveling to Italy. I can't even figure out how to get broth to New Jersey. So this summer we are going to focus on camping. That is our new normal.

Our new normal does not include restaurants, but it does include family dinners. It includes being at home most of the time, and packing an ice chest when we go out. It includes making hard adjustments such as doing almost all of our grocery shopping at the farmer's markets, which requires much planning because they are not open 24-7 like the local Wal*Mart. It includes very little sleep, and feeding a bottle to a 19 month old multiple times throughout the night. It includes almost needing a nurse for child care, and wondering if we will ever get to normal things like potty training. It includes hours in the kitchen, and rethinking,...well....just about everything. It is our new normal.

I was truly blessed to be introduced to the new normal last September. A new friend knew exactly what I needed. It was divine timing. Here is the famous poem that touched me tremendously. Grab a tissue first if you are the parent of a chronically ill or disabled child. And by the way, my favorite flower has ALWAYS been the tulip. Good thing I don't believe in coincidences!


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.


  1. That is one of my favorite pieces about having a child with a disability. I want to have it done on fancy paper, with a neat font and have it framed for my house.

  2. Nichole, this morning I took some time to read through some of your blog for the first time. Till now I knew only what I read on fb, so that's just like an overview. I have a whole new appreciation and respect for the marathon you and Jason are involved in! I just don't even have words to describe it. I have learned a bit about living on a restricted diet, since I was diagnosed as celiac. But even with that, I do not have an extreme case, so it cannot be compared to what Elianna and you and Jason are going through. Like you posted - it's a different country. I would have said a different world!
    So all this to say, keep on keeping on! I will remember to pray for you more often. Ephesians 3:16-21
    Love, Auntie Martha

  3. This actually is also a very good explanation of what it is like to live with a spouse with chronic illness...and to have chronic illnesses myself. We are not doing the things we dreamed of when we met (such as world travel) and just getting out at all is often impossible. However, we do have a lot of quiet time at home. Time to read. Time to sit and watch movies as a family. I would rather be a world traveler than an armchair traveler. I'd rather be in the trenches doing something than sitting at home praying. But this is where God has us. Dying to self. Dying to our dreams. And, hopefully, living for His.

  4. I should have crabbed the tissue when you warned!

  5. I love this Nichole!! This post, this poem, the comment from Doms....:)
    Identifying with you about our new normal, to crying with you about living with a child with a chronic illness, to laughing in agreement with Dom.

    I hope you write a book Nichole, I love to read your posts- look forward to them and always leave me wanting more when one wraps up.

  6. Love it. This is the line that actaully got me choked up: "Our new normal does not include restaurants, but it does include family dinners." Think about a time not too long ago when family dinners were not an option. Praise God!

  7. Wow... I didn't think I would cry, but I did!


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