Raising Amy

The nomination of Governor Sarah Palin has, to some extent, spotlighted the lives of parents of offspring with Special Needs. Certainly most of those parents do not have the luxury of handing over the care and rearing of their Special Needs child to nannies and caregivers, nor would most of us want to.

I say us because I am the mother of a 37 year old daughter with Down’s Syndrome, the Cadillac of disabilities. I have been blessed. My Amy does not suffer with any of the medical problems that sometimes are part of the package of Down’s Syndrome such as a bad heart. She is funny, loving, artistic and my best friend. She has her step-father wrapped around her little finger and is the delight of her niece and nephew.

When a baby is born with Special Needs, friends and family don’t know what to say or how to behave. Frequently what should be an occasion of joy turns into grief and mourning. Certainly there is grief for the child parents spent nine months anticipating. That baby didn’t arrive. That baby was a dream they dreamt which will swim to the surface of memory from time to time as they get older, but the birth of each flesh and blood child should be celebrated and friends and family, instead of dabbing their eyes or pulling away, can help the parents by creating a cocoon of love and acceptance.

When my daughter was born she was not diagnosed immediately. Her father and I had six days to fall in love with her and I’ve always considered that a blessing. That diagnosis changed everything and nothing. She was still a baby and a very good baby. I remember that the wives of some of my father’s Flight Test buddies came to our apartment to pay a visit. I wasn’t sure if they’d come to condole or to celebrate. It was very uncomfortable. At the time it angered me, but looking back from the vantage of 37 years I am mature enough to realize that they were doing the best they could. Perhaps the notoriety of Trig Palin will change how people handle the birth of all babies.

I cannot speak to disabilities beyond Down’s Syndrome and even at that each child is unique. I have worked with students with a wide range of challenges and found things to love in each of them. Some of those students stretch parents emotionally, physically and financially. That is why the love and understanding of those who love the parents is so important.

In 1987 Emily Kingsley wrote a moving account about what it is like to have a Down’s Syndrome baby. It is easy to substitute any disability for Down’s Syndrome. It so captures my own experience that I share it here.

"Welcome to Holland"
By Emily Perl Kingsley, 1987.
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.