Tag Archives: coping

Holland…

WELCOME TO HOLLAND

by
Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

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.

 

Emily Perl Kingsley is an American writer who joined the Sesame Street team in 1970 and has been writing for the show ever since. Her son Jason Kingsley was born with Down Syndrome in 1974.

I’ve written about my son who was born with a cleft lip and palate, cerebral palsy and developmental delays before.  This poem captures the feelings I’ve had for 30 years since his birth…

 

Monday Musings on Tuesday…

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Yesterday was one of the tougher days I’ve had in awhile.  I know lots of you love Halloween, but it’s never been a huge favorite of mine.  I don’t really know why, never liked the creepy craziness of it, I guess.  I like cute, sigh…

October 31 is also the day my dad passed away.  He just never woke up that day in 2000 after an apparently massive heart attack, but my parents lived in Arizona at the time so I hadn’t seen him since their anniversary that spring.  And then suddenly he was gone.  Sixteen years ago…

And yesterday morning was my chemotherapy orientation meeting which consisted of pages and pages of possible side effects from the two drugs I will get, ranging from the mild and uncomfortable to the truly dire.  I’m lucky that I will only have four sessions three weeks apart, beginning this Friday.  One of my best friends is going with me for moral support.

Surgery, maybe because I’d had it before, was nowhere near as frightening to me as the thought of putting these strong medications into my veins to search for minute cancer cells that might be lurking somewhere in my blood or lymph system.

My hair should fall out sometime in the next few weeks, just in time for the holidays.  Perhaps I will lose a nail or two.  I may lose my eyebrows and eyelashes, but maybe not.  I odered a wig which I think looked a lot like my hair.  When my hair starts to come out I’m going to shave it off and wear the wig.  I wish I could find the humor in that, but I can’t just yet.  Maybe later.

The only really funny thing is that when I called my insurance company to check on coverage for my “cranial prosthesis” the person I talked to on the phone said the cost would be covered.  They will pay several hundred dollars for a wig but they don’t cover the cost of my flu shot!

So right now I’m reminding myself that chemo is going to increase my chances of not having a cancer recurrence by a significant amount.  I’m trying not to get too freaked out about getting through the next few months of holidays, trying to stay healthy, doing everything that needs to get done when you’re the mom and grandma, and cope with the fatigue and side effects of chemo.  My last session will be January 6 and I leave for Maui on January 20, with one slushy saline-filled boob and a bald head, but hopefully I’ll be done with treatment!

I’m tearing up as I write this and questioning whether to publish.  But a good friend recently told me I shouldn’t censor my feelings and worry about being entertaining.  I did say I’d be honest with you if you joined me on this journey, even if it’s not always fun and funny.

And maybe it’s not so much about the treatment, maybe I’m just missing my dad…

A lovely lady…a shopping encounter

My lovely virtual friend Jacqueline Oby-Ikocha graciously allowed me to share a very moving story that is so fitting for this month of October. Please check out her blog for more wonderful stories!

a cooking pot and twisted tales

Strength & Courage Quotes 12

Whats on my mind you ask?

This evening, I went grocery shopping with the children and as we traipsed lazily down the aisle, a young, tall, slim, beautiful lady passed me by with a young child.

The first thing that I saw was her hair that was shaved to the scalp and she wore the skin-cut with pride.

I tried not to stare, but I knew. My spirit grew disquietened.

In my heart, I knew that this lovely soul is battling for her life.

We walked past her and continued our shopping but my mind couldn’t focus.

After a while, I backtracked several aisles down to find her. I felt a bit nervous that she might not appreciate my disturbing her peace, but a little voice in my heart said Go! So I continued.

I approached tentatively and out-rightly told her that I noticed her shaved scalp and she confirmed…

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