My twins were never in the same play group, class, or even grade. They were together only in the womb, the NICU and, later, our home. They were on complete opposite ends of the spectrum. Why couldn’t they meet somewhere in the middle? I often asked myself. Born 16 weeks premature, my baby girl had her struggles, but I knew she would prevail. My instinct was right; she did. Relentless in my efforts to somehow change the course of his outcome, I knew my baby boy’s struggles would be permanent. And they were—a mother’s intuition.
Now, 23 years later, I still wonder what life would have been like. Seeing neurotypical twins is a reminder of what they (and honestly, I) did not have. It’s a reminder of everything that was missed, how nothing was typical—and, ultimately, how it has affected my daughter.
What would it have been like to bring my healthy twins home, memorialize their milestones in their baby books, and open our home to visitors wanting to celebrate them? What would it have been like to take my babies to the store or a friend’s home, to smile rather than cry, to savor each moment rather than worry about the next?
What would it have been like to experience my babies developing typically? What would it have been like for my baby girl to have a playmate, a best friend, a partner in crime—to grow up like I did with my brother, who is 15 months older than me? What would it have been like for her to grow up without the constant flow of nurses and therapists in our home, visits to the hospital, or doctor and therapist appointments?
What would it have been like to not worry about my son’s future—or about my daughter’s, for that matter, as the only sibling of a brother with multiple disabilities? What would it have been like to not feel guilty?
When they were 10 years old, I drove the three of us home from yet another doctor’s appointment—an appointment I was hoping would bring a different diagnosis for my boy. It was during that car ride that I realized my daughter already understood what her future was going to look like.
“Mommy…do you think Matt will ever get married?” she asked.
“I’m not sure, why?”
“Well, while we were in the doctor’s office, there was something on TV that said kids like Matt will probably never get married or have children.”
I held back tears.
“It’s okay, Mom,” she said. “He will live with me when you and Dad can’t take care of him anymore.”
“Oh, Sweetie,” I said. “I know you love your brother. But you will have your own life and your future husband may not want your brother to live with you.”
Without hesitation she said, “I wouldn’t marry anyone that didn’t want Matt, Mom. We’re a package. We’re twins!”
In these 23 years, every one of my daughter’s accomplishments has been met with celebration and happiness—but deep down those same accomplishments were always bittersweet for me. She felt it, too, because she wanted her brother to be able to accomplish the same things. I knew she felt it, and it makes me sad still. She has watched me move through this journey, and she wants me to be wholly happy—not the half-happy I am because I wish her brother could be beside her. She gets it, and she always has.
I sat down to write this essay about what it was like to raise twins when one has a disability. But, ultimately, it’s an essay about my daughter. My son is the happiest boy. His innocent smile is the most beautiful thing. He is our light. But my daughter understands and feels more than any mother would wish for her child. It’s been a long and complicated path, and yet despite this, or perhaps because of this, she has grown into an amazing young adult. Her journey, our family’s journey, has grounded and humbled her, given her strength and understanding, and taught her compassion and kindness firsthand.
Will I ever stop wondering what it would be like if my twins were both neurotypical? Maybe. One thing I won’t have to question is who will take care of my son when my husband and I aren’t able to. My daughter chose to take on the responsibility of making sure her brother is safe in the future. That is a responsibility she has understood for a long time, though it’s not what I hoped for her future. It’s something I think about all the time, and I know she thinks about it, too.
Despite these worries, I wouldn’t change either of my twins for anything. The reality of life and her future responsibilities can seem overwhelming, but my daughter will approach all of it with the same compassion and strength her brother has helped her learn from the beginning. My twins will always be on opposite ends of the spectrum in many ways. I will always worry about them equally, too. But they give light to each other. And while my intuition about my son was correct, it was also correct about my daughter. She will prevail, she will keep him safe, and she will be okay.
Main Image: Ceilann's son and daughter dancing at the beach when they were 5.