After Lindsey was born, I held her seven-pound, eight-ounce form in my arms and dreamed about her future. My ears could almost hear her first word—“Mama,” of course! I couldn’t wait to teach Lindsey her ABCs, read Dr. Seuss, play patty cake and peekaboo. I pictured her wearing white tights, her hair tied in pigtails and sporting a huge grin as she headed to kindergarten. I just knew my daughter would graduate top of her class, go to college, get married, and eventually, have a baby of her own. In those sweet moments, I could almost smell my future grandchild’s baby powdered body.

I was ecstatic when Lindsey’s development went according to the guidelines. She rolled over, crawled, talked, and walked on time.

But at sixteen months, life changed. Lindsey suffered a grand mal seizure.

Antonio Guillem/Shutterstock
Source: Antonio Guillem/Shutterstock

Afterwards, she developed essential tremors that caused her hands, arms, and head to shake. She couldn’t coordinate her muscle movements. Activities that were previously enjoyable: coloring, flipping a book’s page, sliding puzzle pieces into correct slots, turned exasperating. A doctor discovered low muscle tone and recommended physical therapy. We enrolled her in preschool, then kindergarten. Teachers, with solemn faces, said Lindsey had difficulty making friends; she wasn’t keeping pace with her classmates.

Oregon Health Science University (OHSU) doctors observed Lindsey for nine months. For me, their evaluation was totally unexpected.

They said Lindsey was mildly mentally retarded, that she had a short in neurological system and would never process information the same as her peers. They said it was from an unidentified syndrome, most probable, from a birth defect. And they told me, as an adult, she would likely live in a group home.

I left OHSU holding Lindsey’s small, six-year-old hand. My girl chattered as we walked, her pigtails bobbed side-to-side. How could those doctors make such predictions when she was just a kindergartner? They don’t know what they’re talking about! My daughter’s gonna be fine!

[Antonio Guillem Shutterstock]
Source: Antonio Guillem Shutterstock

It turns out, though, those doctors understood. More than I could. The gap between Lindsey and her peers widened. On the day Lindsey graduated from high school, instead of a diploma, she received a certificate of attendance. My husband and I were elated, but we wanted more. Despite her intellectual challenges, we wanted Lindsey to live an independent life, to find purpose, to experience love. Fortunately, Lindsey wanted these things for herself, too.

At nineteen, without warning, Lindsey had her first sexual experience. We’d discussed responsible sexual practices, but when it came to the actual moment, no birth control options were used. We worried Lindsey could be pregnant. She worried too, saying that although she could love a baby, she couldn’t be fully responsible for one. She was afraid, because of her tremors, that she might drop it, that she might not wake up in the middle of the night (because she was a heavy sleeper), and that an infant would require more care than she was capable of providing. Besides, she told me, “I don’t want to pass my disabilities on to someone else.” All were excellent reasons not to conceive a child. My daughter made sense.

When it turned out she wasn’t pregnant, Lindsey opted to have a tubal ligation. She called it her “Flop-on” operation because she couldn’t say fallopian tubes. And she didn’t trust that she would faithfully use other birth control methods. I respected her choice, but the decision still made me sad. My daughter would never feel the flutter of a baby growing inside her womb. She’d never hold a newborn of her own.

On the day my daughter’s tubes were tied, relief and grief overwhelmed me. Lindsey would never again worry about an unexpected pregnancy, but my future dream, the one where I held my daughter’s child, would also never become a reality.

Lindsey is now thirty-seven. She lives in her own apartment and is the proud mama to two plump cats. She works part-time and is happy with her life. But a little over a month ago, Lindsey’s cousin (my sister’s youngest daughter) delivered her first child. Shay was barely eight hours old when I got to hold her in my arms. It was a moment I’d looked forward to. Still, I was uncertain how I’d react when I gazed at my great niece’s perfect little face. Would I feel envy? Regret? Sadness? Would dreams of grandbaby love come rushing back?

But all I felt was joy. Pure joy. And so did Lindsey.

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The Special in Special Needs

When Your Daughter Won’t Have Babies

She'll never hold a newborn of her own.