Chapter 4-Walk With Me

Walk With Me-Four

When Josh was nine months old we bought a house in Ransom, Il. Pop. 400. Richard would be turning five and needing to start school. Being a one-car (or rather one truck) household moving from the country to a small town was a nice compromise.

Even though I was convinced that Josh had normal mental faculties, his physical development was noticeably delayed. He couldn’t roll over by himself. He couldn’t sit unaided. He needed help in all areas of his life.

Because he had been in the high risk center for the first two weeks of his life, I was required to take him to a developmental specialist every three months. By nine months there had still been no diagnosis. I knew, when the doctor requested that Hank and I come without Josh, that we were going to hear bad news.

Once again my mother came out to help. She stayed with the boys and Hank and I traveled to Peoria to meet with the developmental specialist. I was way more prepared than Hank was. I knew Josh’s diagnosis before the doctor ever said a word.

I come from a big family. I grew up with six sisters and a brother with scads of nieces and nephews. But I also have aunts, uncles, and cousins, too many to count. We are a close family, a loving family, and I grew up with several cousins that are disabled. I am so blessed to have them in my life.

At no time in my memory have I ever thought of them as disabled. They are who they are. I was taught to always see the inner person. I’ve never felt a smidgen of embarrassment at how someone looks, or talks, or moves.

I didn’t realize growing up with that mind set would prepare me for the life I was now going to live. But I bless my family; all of them, for teaching me that love comes first. Disabilities don’t matter, heart does.

The doctor was blunt to the point of cruelty. I still remember him telling us that Josh had cerebral palsy, he explained what that meant, and while we were still trying to absorb his words he hit us with, “You don’t have to raise him. They have institutions for these cases.” I was afraid my husband was going to slug the doctor.

I’m a mild person. It takes a lot to make me angry. That was my child he was talking about. Nobody was going to take care of Josh but me. He was mine. My responsibility and just because he had a diagnosis of cerebral palsy meant nothing to me. A disability doesn’t frighten me. It didn’t then, and it doesn’t now.

We left and I cried all the way home. Not because I’d been told Josh was disabled but because the way the doctor had broke it to us was absolutely horrible. And I tend to cry when I’m angry. I was boiling mad with no place to put the anger.

Mom put it in perspective for me when I got home. She said they tell us worst case scenarios. That way we’re prepared for the worst and grateful if it’s better than predicted. That may be, but I still think that sometimes a person only has hope left. When you get hit with the worst news in the world please, please allow hope to stay. It can be a powerful ally.

A diagnosis didn’t change how I treated Josh. If anything it triggered what I call my bull-headed mode. I don’t like being told I can’t do something. My reaction to such a challenge is pretty much, “oh, yeah? Watch me.”

I’ll say this now, and you’ll probably hear me say it often. When you’re faced with a problem analyze it, learn about it, listen to experts, do whatever you can to become educated about it; then follow your gut even if what you decide to do is in opposition of what others tell you

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