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This would lead to my asking Mattie what he wanted to be. In years past, Mattie always talked about wanting to be a daddy—not simply a father, who wasn't necessarily close, but a daddy. He was going to have seven children and had already named them. The oldest was a namesake, Matthew Joseph Thaddeus Stepanek Jr., who would be called Tad. Second would come Kathryn Hope, to be called Katie Hope after his sister, Katie, and his favorite word (and also his friend Hope, who he was fine with being his children's mother). Third and fourth would be Steven Blaine and Jamie, after his brothers, Stevie and Jamie. Since "Jamie" was not just his brother's name but also one of Sandy’s daughter's names, she'd be a girl. Her middle name would be Margaret after his great-aunt Margaret, who died around the time he was born but had been very good to me while I was growing up. Mattie liked that he and I played Parcheesi with the same dice Margaret and I had rolled when I was a child.

Fifth came Patrick Noah ("Patch," for short), followed by Theresa Rose, or Tessie, which was going to be Mattie's name had he been a girl. Mattie planned on giving Tessie to me, and when I'd tell him his wife wasn't going to like that, he always explained that he'd make it up to her by letting her name the seventh child whatever she wanted, with the proviso that if she didn't choose a name within 30 days, the right to give a name would revert back to him, and in that case he would choose Sophie and Sadie since the youngest children would then be twin girls.

Pure fun as all this was, the idea of Mattie's fathering children wasn't totally in the realm of fantasy, and he knew that. Mitochondrial diseases like his are invariably handed down through the mother because virtually all of a person's genetic code for mitochondria comes from the egg—there's essentially none in the sperm. Thus, Mattie knew that if he made it through adolescence—and one doctor had even told him that adolescence would be a make or break point for him because the body goes through so many changes at that time—he could have children and not risk passing on his disease.

But as night shifted toward dawn that morning on the pier, Mattie didn't talk about having children. Instead, he went "off script" and said that sometimes he worried about what he would do if I died before him. He told me that if something happened to me first, he'd go into his room and stay there until he could come out and cope, that he'd end up having to shave a very long beard because that's how long it would take him to be able to move on. But he would move on, he said, because "you can't lie down in the ashes of another person's life." He talked about how after a time it would be okay to laugh again, to play with friends, to have fun.

Of course I nodded in agreement while he spoke, and did what a mother does in my situation—told him that I'd stay here as long as I could. While a prognosis is something of a moving target, the one I had been given left me with a vague “six months to ten years.” But Mattie wasn't looking for an answer from me. He was setting me up.

"If I die first," he said, "you have to do the same thing—move on—because I could go before you, Mom."

I wanted to pull Mattie away from this line of thinking. His whole life was spent on the edge, yet we had always managed to skirt it, to find some semblance of stable footing and keep our focus on daily living. Now here he was looking over the edge, but he was just a boy; it was my responsibility to keep him looking in the other direction.
FROM: Oprah's All-Time Favorite Guest Revealed!
Published on May 20, 2011

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