Since Noah was born I have been looking into different things to do with HIE (Hypoxic Ischemic Encephalopathy) which is what Noah suffered at birth.
I stumbled across a group of people on Facebook whose babies had suffered the same thing. All in different degrees. Some were only mildly affected and have gone on to have small if any long term disabilities, some, like Noah, are very severely affected. And there are many in between. Although we all have different individual stories and babies some of our questions and emotions are very much alike. It definitely helps to know you are not alone and there are people who can truly understand what you’re going through.
Some of the people I have met have blogs like the one I made for Noah. I was reading one ladies blog and she posted a story she had come across. It really hits home with me and I wanted to share it with you.
"Welcome to "Holland"By Emily Perl Kingsley, 1987. 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.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"
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.”
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ReplyDeleteWhat a beautiful perspective.xoxo
ReplyDeleteKat I was sent this link by a friend and I had tears in my eyes in awe of someone who has the strength to look at life the way you do. I then realised that Noah was the boy who spent weeks next to my son (Blake) in HDU. I said hi to your husband a few times but I was too scared to ask anyone what your situation was. I knew it was bad when your family was allowed in. I wish I had introduced myself now. I have often wondered what happened to you all. Now I know. Anyway, I hope you continue to find strength in your journey. Good luck.
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