Thursday, April 13, 2006

If You Could Read My Mind

I had been avoiding her call for weeks. Yesterday, as I typed up my “To Do” list for the week, or my “Basic Weekly Plan” as I call it, her name reappeared. The issue that is causing this procrastination, are the transition plans for Dear Son after high school. The transition plan, documents the family’s wishes for their child’s future, when they leave the school system. She wants to know about my “vision” for my child’s future and specifically, “What do I want my child’s day to look like, when he exits the public school system?” From there, they will spend the next four years, developing his high school goals, around that vision.

It’s not that I don’t think it’s a good idea, but at fourteen, it’s a little late to ask me what my “vision” for this child will be. My dreams for Dear Son were buried a long time ago when I was picked up like Dorothy in the Wizard of Oz and tossed into the wonderful world of healthcare. As Dear Son lie bedridden, I find the calls for his future planning quite heartbreaking. But the breaking of a mother’s dream, was insulted by the school system, long before now. When Dear Son was in elementary school, I had to endure every school handout of fall football tryouts, along with basketball, baseball, soccer and every other sport you could imagine. In the meantime, I was still waiting for Dear Son to take his first steps, “alone”. Dear Son’s notebook, that was attached to the back of his wheelchair, was filled with these daily reminders, of what was never to be. I asked repeatedly for these not to be sent home to the Physically Disabled classroom or even just to Dear Son, however my request fell on deaf ears. It seems it would be “discriminatory” to “not” give each child the same information. Sometimes, it’s more important to be kind, than to be right.

My dreams for Dear Son are like a lot of Moms. To see their son grow up, date beautiful girls, have his first kiss, go to college, watch him get married in a church and have a family of his own. And in that order. I dream of my son doing what he loves and seeing the joy in his face. I want to be there when he buys his first home or has his first son or daughter. I want to be a Grandmother, of course. I want to see my son in my grandchildren’s eyes and see the world through their rose colored glasses as we make play dates in the park.

Instead, I will watch him deteriorate, doing less and less as the days goes by, instead of more. I will see the fire in his eyes slowly fade away and eventually burn out. I will be left with the ashes where a grand fire once was. I will watch his eyes when we are out somewhere, when he looks at other girls his age, and they ignore him like the plague. As handsome as he is, the normal girls have no time for him due to a nasty twist of the gene. If he was normal, these same girls would be tying up my phone lines, at all hours of the day and night. I will watch him on our daily walks around the golf course, on the jogging trail, as the other teenage boys run past him as they get in shape for their high school sports, never looking down at him in his wheelchair, but staring straight ahead. I will watch his eyes look up to them as they run by, imagining himself running beside them.

My dreams are different now and have been for some time. I want to take care of him at home, for the rest of his life. I want him to be comfortable in a sea of love and know that regardless of what parts of his body no longer work, that in his mother’s eyes, he’s everything she ever wanted in a son and that he will forever be the light of my life. I want him to know that there is no where else I would rather be, than taking care of him.

So tomorrow, I will make that call and tell her my wishes. And when I do that, a little song will play softly in the background, to the old Gordon Lightfoot song called, “If You Could Read My Mind” with the some of the words changed for my son. It would go like this,

If you could read my mind, Son,
What tale my thoughts could tell,
Just like a super hero story,
That all the young boys love.
And when you get to the part, where you can walk,
And you could then be free,
Then you would run and play.
And if you could, then I would cry,
Because my son, I’d be so glad for you.
But it is, not to be.

If I could read your mind, Son,
What a tale your heart could tell,
Just like a super hero story,
That all the toy stores sell.
And when you reach the part, where the heartaches come,
The hero would be me,
But heroes often fail.
And you won’t read that book again,
Because the ending’s just too hard to take.


zoe said...

Dream Mom I am sorry for the dreams that you will not have. I have the feeling though that you are not a woman who will measure her life by what she has lost but by what you were given. A beautiful son who you have loved with all your heart. Your life as a mother has been unique and unlike most other moms. Most people could never imagine--but you have had to. Given the challenges that you and your son are facing it sounds to me like you have made a good plan--I think a "sea of love" is a good place to be. Special prayers go out to you this week as you develop his transition plan. God Bless you both!!

Wrkinprogress said...

I am plenty old enough to remember Gordon Lightfoot, and that song of his always got me the most. Dear Dream Mom -- how privileged I feel to be able to share in your life. Thank you, dear, sweet lady, for having the courage to live your life out loud and in the now, sharing with us strangers who have come to love you and Dear Son as much as our own family members. May this day bring you peace and unexpected joy.

With love and admiration,

zoe said...

"You loved that beautiful son of yours with all your heart"-with your whole heart even though your son was not whole--physically or mentally and for a lot of people that would have been enough to walk away or to to give up. You did not. Your learned how to love him, you learned to see his beauty in spite of what he did not have and what he has lost. You have learned to glean everything positive from a small moment--a dirt hole, a christmas play, Gretchen Wilson, and all of the other stories you have shared with us. In those small moments a beautiful life has been lived and you have gotten to share that with your son. Yes, you will know when the fire leaves his eyes because you know him like no other and it will be painful. My heart goes out to you and I pray that God will give you what you need to endure when that day comes. As He has for all the other times you have endured. You have been the very best mom for the very best son and today take joy in that!

star firstbaseman said...

What a sweet, heartfelt post.

Judy said...

When I was at Duke, many years ago, there was a young man with some form of Muscular Dystrophy. His fraternity brothers clearly cared very much for him and made sure he didn't miss out on too many opportunities to participate in college life. They got his wheelchair places I certainly wouldn't have expected. It was a great thing to see.

I don't know what your son's dreams are, but I hope the folks at his high school will truly listen to you and help you to plan for them.

dki617 said...

Well, you did it again, Dream! I'm sitting here bawling!

I understand the lost dreams. Alyssa was about one and a half when I realized she'd never be able to cross the street alone. And she was about two when I realized she'd never be able to drive a car or ever be able to care for herself. Now here she is - 12! - and I wonder if she'll ever be able to feed herself with utensils.

When people talk about dreams for their children, they so often think of different dreams than you and I. Dreams that we gave up on a long, long time ago.

Nichole said...

Dear Dream Mom,

Tonight I discovered something wonderful and something tragic. Your blog.

My own dear son has cerebral palsy. This would explain why the tears poured down my face as I read this particular entry in your blog. You so eloquently put into words all the things I want to say and all the emotions that I am feeling.

Thank you for sharing yourself, and your Dear Son. Thank you for educating others about what it is like to be special needs, and to parent someone with special needs. And lastly thank you for the tears, because with each one I am reminded that I am not alone.

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