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Wednesday, March 9, 2011

You may ask yourself, how did I get here?

Sometimes we can plan and plan, but life does not exactly follow the road map that we have drawn up for ourselves.

I know this girl who just had a baby. Her plan was to do a home birth. Also part of her plan (and I'm just supposin' here), was to deliver the baby at or near 40 weeks gestation. She ended up having a c-section in a hospital at 43 weeks.

I know all too well how birth plans can go awry. You can read about my experience with Elise in this post, Why birth plans are Crap.

I remember when Elise was first diagnosed, one of my many laments was, "this is not how it was supposed to be." I had had visions of making gingerbread houses with Elise, not poking her fingers 10-12 times a day. Licking cake batter out of mixing bowls, instead of holding down a screaming baby to give her a shot. Slumber parties, dropping her off at a friend's house to play... you get the picture. With her diagnosis, certain dreams and ideals I had about the fun I would have with my little girl were dashed.

It took me the better part of a year to realize that this was just not true. Maybe at that moment in time, it was our reality (and may be for you too if you have a small child that has just been diagnosed), but as Elise got older, and we became more experienced, we got the courage to try things we never thought possible at diagnosis.


Take pre-school, for example. Even a year ago, I would have told you that there was just no way. But then, an opportunity came up... a school located a 20 second drive away. A teacher with type 2 (who had to leave at Christmas, but was replaced by another teacher that has two type 2 parents). A staff that was loving, caring and open to learning about what our needs were. Add the wonderful Dexcom to the equation, and we were able to take a huge step in letting go of our fears and uncertainty.

Our life may look nothing like how I had envisioned it was I first saw that positive on the pregnancy test, but it's okay. I know that God has not given me more than I can handle (though on some days I have a hard time believing it), and that there is nobody out there who was better made to be Elise's Mom... exactly the way she is.

And while our plan was to go to Italy, sometimes our road map leads us away from where we thought we were going, and takes us to a new place entirely; like Holland.

I think it's time to remember why Holland is such a great place to be:

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.
c1987 by Emily Perl Kingsley


Why Holland is so beautiful

18 comments:

  1. Beautiful post! I often have these same thoughts...I'm sure we all do at times...and have to stop and remind myself that as much as I'd love for my little girl not to have a D it has really given me the opportunity to learn so much about her and given me a different perspective on life. Holland is definitely beautiful :)

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  2. Holland is indeed beautiful! I used to hand that story out to parents as I was an educator of children with special needs and never in a million years did I fathom that same story would bring me comfort some day.

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  3. PS (I haven't gotten an email from you timm.heidi@gmail.com - you won the giveaway on my blog)

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  4. I often say, "I can't believe this is my life," but yes, Holland is beautiful and Italy isn't perfect either :)
    I enjoy your blog.
    Thanks for putting words to many of my feelings!

    Julie

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  5. I was first introduced to that poem when I was pregnant with Adam and found out he had a cleft lip. I often remember thinking "this is NOT how it is supposed to be." And....I've had that feeling a lot over the last few years. But, he is such a wonderful boy, I can't imagine my life with out him and I agree...Holland is beautiful.

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  6. is it okay that you still cry while enjoying Holland? I keep feeling like I can't catch my breath. I feel like their are reminders everywhere that it's different. I think having one child with diabetes and the older one without makes it so obvious how different and yet how similar things are...wow, just having one of those days over here.
    Thanks for sharing this post Joanne, I've never read it but certainly need to today!

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  7. What a beautiful young lady she is turning into :) Holland is splendid indeed!

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  8. AMAZING post, Joanne! Elise is beautiful and you are too.

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  9. What a great poem! This is often what I think and was the first thought in my mind when Natalie was diagnosed, "This was not part of my plan for my daughter." Still isn't, but slowly learning to deal with it and live with it.

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  10. Sometimes, we need to be reminded about just how special Holland is. Thanks for reminding me. :)

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  11. Beautiful post and beautiful little girl you have there!

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  12. I've always loved that story. Holland is different but not terrible. :) Good post.

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  13. your Holland is super beautiful :)

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  14. First, that picture of your daughter is amazing. What a cutie! So happy that you see that diabetes isn't a lockdown situation. My daughter, Ava (9), sleeps out, plays soccer & volleyball, skis, went on Space Mountain roller coaster for the first time 6 weeks after diagnosis and is going to a two week sleep away camp this summer. Elise will lead a wonderful, rich life because you will have given her all the tools she needs to take good care of herself. You have a beautiful family.

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