When Sam was young, people regularly gave me a copy of "Welcome to Holland" - an essay by Emily Perl Kingsley on what it is like to give birth to a child with disabilities. It is a wonderful essay and you can find it here:
Welcome to Holland
Someone also gave me a book written about the same time called "Hope for the Families" by Robert Perske and illustrated by Martha Perske. 30 years later, it's still in print and available at Amazon.com. The illustrations are beautiful. One of the very first things he says is "Accept the fact that the 'child of your dreams' never was and never would have been. All parents must acknowledge this sooner or later. Your problem: You must do it sooner."
Sam wasn't what I was expecting, but he was pretty terrific. No one gets the child they were expecting, life just doesn't work like that. These two thoughts helped me come to terms with the reality of being Sam's Mom and got me started on our wonderful 33 years together.
Chapter One of my life is the 30 years before Sam was born. Chapter Two is the almost 33 years we spent together. Now, if my mother is anything to judge by, I may have a Chapter Three! She's 86 and beginning to consider slowing down.
My plan, once I got used to the idea of being Sam's Mom, was that he would die before me but close to the end of my life. Then I wouldn't have to wait very long to join him in Heaven.
Once again, life has thrown me a curve ball.
This is rather a shock. I knew in my head that he was dying, but I really didn't believe it in my heart. In the last couple of years, I did try to look ahead and make a plan for surviving him, but I was too busy taking care of him to really think ahead much and it felt like giving up. And, honestly, I can't imagine a better way to spend my days than being Sam's Mom.
Only suddenly, unexpectedly, here I am, Sam-less and healthy. Four months and counting into my new life and I'm ready to look around and figure out what to do with my days until I see my boy again.
It's not what I was expecting, but it's got some rather intriguing possibilities.
No one gets the life they plan on. Life just doesn't work like that.