can be a sad cycle that feeds off itself, and Jaymee was not exempt. As long as she kept onhoping that Logan would be different from one day to the next, she wasn’t letting herself move on. As much as I hoped to shield Jaymee from the truth—that if Logan
did
change from one day to the next, it would likely be for the worse—I couldn’t bring myself to do it. I can’t do it in my personal life, and I can’t do it in my professional life. I have been asked by family members of ALD families in denial, begging me to reach out and shake them into reality, but that’s not what I do. I cannot see myself soliciting anyone in that regard.
Understanding where you are emotionally each day benefits you, as well as all other people in your life. But being in touch with who and where we are requires effort. Asking yourself probing questions from time to time can be difficult, even painful; but it cannot be wrong. Being so busy that you can’t see anything other than what’s in front of you doesn’t allow for the time needed to be where we want to be. Investing in yourself is never a mistake.
So, yes: I was concerned to see Jaymee trying to reach out to Logan every day. She meant well, this I knew, but by putting unrealistic expectations on herself and Logan, she was attempting to create hope that did not exist and was setting herself up for disappointment. I understand that she had no choice; she felt she had to do
something
. To simply stand by and watch as your child loses his or her abilities would be unconscionable. Jaymee was a caring and concerned mother, and it wasn’t in her to be anything less. But in this particular situation, there could be no response from Logan’s side. No response, meaning wasted effort and the destruction of the hope Jaymee had invested. But through it all, there was little I could do or say; how could I tell my wife not to help our child?
Chapter 7
IN JAYMEE’S EYES
W HEN I SAT down to write this book, I had always intended to have a chapter written by my beautiful wife, Jaymee. The hope was that she could write something from her perspective, to give her thoughts on what we went through.
When I broached the subject with her, I tried to do so as sweetly as possible. “Babe, would you consider writing a chapter?”
“Sure,” she said. “Give me a couple of hours and I’ll email you something.” She sounded interested enough, and I was pleased, especially in light of the fact that it took me more than just a couple hours to write chapters.
A few hours later, the promised email arrived. It was just five paragraphs, describing her past and her current feelings about ALD. It was clear that, while she was willing to put her feelings down into words, the idea of working over it and polishing one’s personal thoughts for public consumption wasn’t one that appealed to her.
I can’t say that I blame her. Maternal instinct is far more powerful than any of us will ever imagine. Not many will understand what it means to have your child not recognize you anymore. His vision and hearing start to go and he believes that every person he meets is his mother. I hope that most of those reading thishave not experienced tragedy of this magnitude. For those who have, I wish you all of the peace and joy that life can offer going forward. Seek joy; while it never compensates for the pain and loss, it sure as hell beats experiencing the bad stuff.
All the same, I decided to write something about Jaymee, after discussing with her several of the issues that have plagued us throughout this experience. These are issues that, if they could be understood by others, might actually change their point of view about parenting their own kids. Don’t get me wrong; this is not a self-help book. It is a direct extension of my love for my family, nothing more, nothing less. I would not be who I am today if not for them. The secret to life truly is just love—everything else will take care of itself.
Jaymee grew