Dear Rob and Angel,
You invited people who care about Charlie to email their thoughts. I had been bouncing back and forth for a long time to send you this or not. But since you have invited, here it goes. The reason why I was so hesitant is simply you don't know me. I didn't want to seem intrusive on your family's life. So you have some connection to who I am, I am Doug Benson's cousin. I have a daughter just about Charlie's age.
Charlie's story has had a great impact on me. I've spent nights bawling at the computer screen, my heart going out to you. I don't check the blog near as often now, only every 6 weeks or so. Once I showed my mom your blog and she started crying too. See, it hits so close to home. My sister was born with mental/physical disabilities associated with microcephaly. And your story brought back so many memories, the J-Peg, the not knowing how much of her surroundings she could take in, the tumbleform chair, the wheelchairs, the times when you know she recognized you somewhere deep in her.
You may have already received this story from someone else, but if not, enjoy! I think of this poem every time I read your blog. My mom received it sometime after my sister was born, and I remember her passing it along to others in similar situations.
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
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
But there's been a change in the flight plan. They've landed in
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
But everyone you know is busy coming and going from
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
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Through time, the blessings out way the strife. I feel I am really inadequate to speak about this since I was never the parent, only the sibling. I probably don't know a quarter of what this really entails, but I do recognize the affect it has on you, your family, and all those around you. My prayers are always with you. (Attached is a picture of my sister and I. I tried to find one with our brother too, but simply couldn't find the one I was looking for).