My Perspective: Melinda Watson, Mother of Luke and Rachel

LRBF“A dream is a wish your heart makes when you’re fast asleep.” Disney may have gotten that one wrong unless as last night’s dream suggest I wish I was on a sinking ship chatting with my third grade teacher while living at my house that is not really my house.

Joking aside, don’t we all wish for things? Things for our future? I’m not talking about being president or curing cancer but “normal” things at the appropriate times in our lives…I wish I could get my ears pierced (that goes for the guys I went to high school with in the 80’s), I wish I could go to a certain college, meet the right person, have kids, have our kids be happy, get a bigger house, have our kids leave, get a smaller house….you get the idea. Sometimes, we get our wishes and sometimes we don’t. When we don’t, we just shift them to something else. Now when our children don’t get their wishes, our hearts break a little, but we talk to them, pray with them, and show them how it will be okay.

I remember like yesterday Luke realizing he couldn’t play baseball or go to A&M while Rachel wished for friends and a boyfriend. Over and over, I’ve given the speech about how they are different and special.

Parents of handicapped children often are seen as aloof and criticized quite a bit for not being more “involved” in their child’s school especially in the upper grades. Well, to be honest, it hurts to see the “normal” girls with their chatter and giggling. It is torture to take Luke to his high school’s baseball games because we wish we were watching him out on the field. I’m not without fault—as a teacher, I criticized parents for putting their multi-handicapped child in summer school, thinking they just wanted free babysitting. Now in their position, I know how very wrong I was. I can’t stimulate Rachel on my own everyday all day—there are no days at the pool, vacations, friends who come over, or trips to the movies. She needs more than her wheelchair, recliner and bed. This is when my older parent self would like to smack my younger know-it-all teacher self.

So, what would you do if you had to quit wishing? I mean for the “normal” things. I can’t wish my husband Sam and I could go on vacation because that means the kids will be gone. I can’t wish to go back to work because that means the kids will be gone. I can’t wish for that retirement home by the water because that means the kids will be gone. I can’t wish to leave Houston because that means the kids will be gone. A doctor asked me this week, “What is your plan for the future?” My plan is wishing the future wasn’t going to happen.

Melinda and her husband Sam are parents of Luke and Rachel, both of whom have Batten disease. To hear more of the Watson’s story, click here

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