My Life in Holland
My Life in Holland
Hello everyone! I'm new to this site but I'm a blogger at heart so I thought this would be a great way to introduce myself and meet others on a journey similar to mine. My caregiving story is long and sordid. Put simply, my life "did a 180" 12 years ago. Everything changed.
I am a mom/caregiver to an (almost) 11-year-old boy who was born with a rare chromosome disorder. He is non-mobile, non-verbal, g-tube fed, trach dependent and 100% dependent on (mainly) me. I have family around to help me but I'm such a control freak that I rarely let them do so.
The picture above is of my son, Will, on his 10th birthday. He needs a full support wheelchair and is very small for his age. We keep him at home (homeschool) and only travel for doctor appointments. He is a kidney transplant recipient and is immunocompromised. So I am a true STAY-AT-HOME mom (and love it)!
I've been reading blogs and watching video chats on this site so I know many parents/caregivers felt the same way I did when their "special needs" child was born. I felt lost and scared about the future. Yes, I thought "why me?" many times. It took a long time for me to understand what happened. I found comfort in these beautiful words:
Welcome to Holland
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, 1987. All rights reserved.
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