Friday, April 10, 2009

I Just Found Out That My Baby Has Spina Bifida

First off, I would like to offer you a bittersweet "Welcome to the Club". It's not a club you ever wanted to join but here you are.

No words I can say here can encompass all the emotions you are feeling right now. I know. I have been there.

Right now you probably have more questions than answers and more fear than certainty (vague and evasive answers from doctors don't help much in that regard).

Like any parent, you want answers and you want them NOW. What happened? How bad is it? What will the future look like? Are just some of the of the questions that may be driving you to the brink. Our goal here, as parents who have been down this road before you, is to give you as many answers and as much information as possible in a simple, easy-to-use format.

Information. Clear. Concise. Now.

But before we get into all the medical details let me just say, you are not alone.

It is estimated that 1 in every 1429 children born in the United States each year is born with SB.

With an estimated 4.4 million births in 2008, that means that an estimated 3048 children were born with SB in the United States last year alone. That's over 6000 moms and dads who faced exactly what you are facing - and some of them want to help.

The links in the margin are the easiest way to navigate and access the various resources offered here.

If you don't see the information you are looking for, e-mail us! Chances are we have the info but just haven't gotten around to posting it yet.

In addition to medical information, it is probably a good idea for you to seek out a group of parents who you can go to for support. Our Support Resources page lists various ways to connect with people just down the street or around the world.

Mom, dad, you can do this. Take it from me, father of little Annabelle Lucille Linden, born 8/7/8 with T5-level SB, Hydrocephalus and two clubbed feet.

It's hard, to be sure. And there may be dark days ahead . . . but it is worth it . . . it is all so very worth it.

by Emily Perl Kingsley.

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.

No comments: