A Community Helps

Nearing the end (hopefully), I can’t stop thinking about all of the things that have helped and hurt us along the way on our hip journey. Foam wedge- helped. Bean bag chair- helped. Trying rice cereal for the first time days before surgery- hurt. Traveling anywhere- really hurt. The thing that helped me the most, not so much Stella, was the online communities of other parents around the world battling hip dysplasia. I can see how this would be unexpected. Hip dysplasia is a physical birth defect making everyday life hard to manage physically. My daughter’s body is a bit different compared to others and it seems like we have been living in a world that is just not structured for someone like her. Everything needs adaptation and everyone stares but these physical challenges are nothing compared to the loneliness and helplessness you feel inside when there is an unwanted, life-changing diagnosis. These communities, they are everywhere and are flooded with worried Mommys and Daddys just like me. They are worried about their little’s upcoming surgery or x-ray. They are struggling to get out the house efficiently. They are yearning for a single day of normalcy just like me. There is a place where you can go to say “I am miserable lately because of my child” and no one judges you or “I am happy because I went to the grocery store and no one made a comment” and everyone feels what joy something so simple brings to families like ours. You cry for people you do not know and you feel genuinely excited for their triumphs. We are so alike compared to those in our everyday lives. The DDH communities have taught me a valuable lesson: when you are going through something difficult, someone else is going through something quite similar. Find them and talk to them. You’re not alone.

Here is my favorite quote shared by someone in my favorite group:

“I’m often asked to describe the experience of raising a child with a disability, 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 guidebooks and make your wonderful plans. The Coliseum. The Michaelangelo 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, board the plane, and off you go. Several hours later, the plane lands. The stewardess 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. You’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 guidebooks. And you must learn a whole new language. 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 awhile 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.
Yet everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. 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 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 go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”
-Emily remembering 1987 From The Womanly Art of Breastfeeding

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