Insights and inspiration for raising a child with disabilities

Life will never be the same because there has never been anyone like you…ever in the world.
– Nancy Tillman, “On the Night You Were Born”

Welcome to Holland
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.

Just For Today
by Sally Meyer

Just for this morning,
I am going to smile when I see your face…

and laugh when I feel like crying.

Just for this morning,
I will let you wake up softly in your flannel p.j.’s…
and hold you until you are ready to stir.

Just for this morning,
I will let you choose what you want to wear…
and I will say how beautiful you are.

Just for this morning,
I will step over the laundry to pick you up…
and take you to the park to play

Just for this morning,
I will leave the dishes in the sink…
and let you teach me how to put your puzzle together.

Just for this afternoon,
I will unplug the telephone and keep the computer off…
and sit with you in the garden
blowing bubbles.

Just for this afternoon,
I will not yell once, not even a tiny grumble when you
scream and whine for the ice cream truck…
and I will buy you one, if he comes by.

Just for this afternoon,
I won’t worry about what you are going to be
when you grow up…
I will simply love you for the joy you bring me

Just for this afternoon,
I will let you help me make cookies…
and I won’t stand over you . . . trying to ‘fix things.’

Just for this evening,
I will hold you in my arms and tell you the story of how you
were born…
and how much we love you.

Just for this evening,
I will let you splash in the bathtub…
and I won’t get angry when you pour water over your sister’s
head.

Just for this evening,
I will let you stay up late…
while we sit on the porch swing
and count all the stars.

Just for this evening,
I will bring you glasses of water…
and snuggle beside you for hours…
and miss my favorite t.v. show.

And tonight when you are sleeping safe and warm in your bed,
I will think of the mothers and fathers
who mourn for the children they have lost.

I will remember the parents who sit by hospital beds,
watching over the little ones they love.

I will weep for those parents whose children are cold,
hungry and suffering,
and …. this evening,
when I kneel down to pray,
I will simply be grateful for all that I have
and not ask for anything…
except just one more day.