Amanda’s Story

(This was posted on the Bereavement Message Board)

I am often asked to describe the experience of raising a child with a disability, or being a parent who has experienced a loss- 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.

– Emily Pearl Kingsley

I lurk on a Bereaved Parent Message Board. I do not post much these days but some how find comfort in reading.

I have noticed a few things in the past 3 years. There are things that the Bereaved Parents talk about that no parent should ever have to worry about much less discuss on a Message Board!

1. Did you put your baby’s middle name on their headstone?

2. What outfit did you bury your baby in?

3. Concerns over Airport Security with Cremated Remains

4. I must not be a mother, I never got to feel that Love.

5. Happy Angel Day. Instead of Happy Birthday.

6. Poems and Songs about the death of a child are everywhere on these Message Boards.

Here is one I recently found that I like

Little Snowdrop

The world may never notice
If a Snowdrop doesn’t bloom,
Or even pause to wonder
If the petals fall too soon.
But every life that ever forms,
Or ever comes to be,
Touches the world in some small way
For all eternity.

The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says that we love you.

– Author Unknown –

Holidays are very hard, especially Mothers day and Fathers day. There are many posts about how to deal with their own pain for these holidays and also how to deal with Society not recognizing that they are indeed parents.

But whats hard for me is seeing the new names the new losses on these Boards. Moms and Dads everyday join this exclusive club that no one wants to be a member of.

Kim