Filed Under Perspective

Tonight I came across a file on my computer I’d named “Perspective.” I’d forgotten all about it. When Avery was first diagnosed, I scoured the internet for hours on end, searching for medical information or the latest genetics research. Occasionally, I’d stumble upon something beautifully personal. When I did, I’d cut and paste it into my file and visit often to read the words that helped to put our new world into perspective.

These are two of my favourites.

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.

The Special Mother by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen? Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“This one gets a daughter. The Patron saint will be Cecelia.”

“This one gets twins. The Patron saint will be Matthew.”

“This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity.”

Finally he passes a name to an angel and smiles. “Give her a disabled child”.

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.”

The angel gasps – “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider any ‘step’ ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see…ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.”

“And what about her Patron saint?” asks the angel, his pen poised in mid air.

God smiles. “A mirror will suffice.”

Comments

3 responses to “Filed Under Perspective”

rheanne

January 2, 2011

You are amazing. I know you are perfectly suited for Holland, even if it is hard to be there some days. Your children are both so lucky to have you.
Lisa

January 2, 2011

Not amazing at all. I just happen to really enjoy tulips and wooden shoes. 🙂 Thanks. Your comment made my day. xxoo
Shanon

January 2, 2011

I loved these 'perspectives'.
Also, I did not know you had a child with 'unbalanced chromosomal translocation'.
Actually I did not know you had this blog, I have only seen your yummymummy posts.
And so, I have been hanging out here for a bit, doing some reading…
and I will be back!

Also. I understand that Holland can be quite magical this time of year.

Happy New Year, Lisa
Shanon

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3 responses to “Filed Under Perspective”