Remembering The Early Years

What do I remember?  My daughter, Mel was born in 1996.  I remember knowing at the moment I heard the words Myelomeningocele, that life would now be different.  I loathe the way the doctors tried to talk above my head, until they knew I understood with word.  The room got so quite.  The next day, my Obstetrician seemed to rush in and out of the room.  Releasing me quickly but so quietly; so unlike when my first child was born.

Neighbors stopped by but their visits seemed very short. Apprehension, uneasiness and worry were all around.  So many questions, so many doctor visits.

I quickly researched and found out 80% of kids born with Spina Bifida have a non-verbal learning disorder.  Seizures, Braces, Shunt Malfunctions, Wheelchairs, Learning Disabilities,  so many things to think about.  And in those first few days, like all parents I assume, I decided I was going to do all I could to help my girl beat the odds.  The neurosurgeon hinted that the first shunt could be the only, I hung on those words.  So far the shunt has lasted.  I remember hating one of the first Spina Bifida christmas parties.  How dare they bring in cute dancers with legs that worked.  How I needed and appreciate the support network the Spina Bifida Association brought.  I remember hating the commercials about folic acid.  Why did I not get that information sooner? Why did they have to discover this after my child was born.

I remember the first time I read the poem  “Welcome to Holland”

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 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…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 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.

That was my life and the words rang so true.  The confusion, the learning, the meeting new people, the asking why, the grieving and the fact that I would not change one minute of my life as I LOVE Mel just the way she is.

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One thought on “Remembering The Early Years

  1. Hi. I’m glad you found my post on wheelchairs of interest. I know those feelings about why people not telling you about certain things, and if you’d only known this or that. Honestly, I had premonitions about my daughter, and was so paranoid I’d end up with a special needs child. Don’t know why, but, alas, it happened. Anyway, I hope you and your child had a nice Thanksgiving.

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