Support for all members of special needs families

5 Questions for a Parent of a Child with a Rare Seizure Disorder

Hope for a Sea Change cover art

Sometimes Life in the Different Lane pushes you further than you ever thought you could go. I’m honored to interview my friend Elizabeth Aquino, author of the memoir Hope for a Sea Change and A Moon, Worn As If It Had Been a Shell, her blog. The exquisitely written Hope for a Sea Change chronicles the first year of her experience with her daughter’s life-long struggle with epilepsy. I am indebted to Elizabeth for her candor, openness, and generosity in doing this interview.

1. You had mentioned that you came to like people you “wouldn’t otherwise have dreamed of knowing or even liked.”  What other aspects of having a child with a disability have you experienced that you wouldn’t have if Sophie weren’t in your life?  

I honestly look on my life before I had Sophie as another one entirely, so everything that’s happened since seems marked by her presence. I know that I would never have made my home in California and discovered the part of the world where I am happiest despite however many hardships I face. I love the Pacific ocean and the temperate air and the easy access to desert, mountain and sea. I also love the accessibility of progressive ideas about health and natural medicine and acupuncture — alternative medicine in general — that I never would have learned about nor embraced had I not had Sophie and sought alternatives for her.

2.  What was it that caused you to feel “a strange sense of relief despite having handed my baby to a stranger,” especially since it sounds like you hadn’t gone into the room with her?

It’s difficult to articulate how powerful and life-changing Dr. Frymann was and became in our lives. She was old and very stooped and small, even then nearly twenty years ago, yet she exuded peace. I’ve very much learned to trust my instincts since meeting and entrusting Sophie to Dr. Frymann. I think she embodied all that was inarticulate inside of me, my dread at how Sophie was being treated, my intuition that she was being harmed and not helped, etc. When she took Sophie from me, I felt relieved somehow of the burden, that someone was finally going to help us.

3.  You had written if someone told you that you would eventually make California your home, and that you would have two more children there, you would have “shaken my head and laughed.” At what point did you decide to make the move?

I made three trips out to southern California for six weeks at a time over about two years when I was still living in New York City. The osteopath’s treatments were really helping Sophie, and I found going back to dark and cold New York harder and harder, even though I did love living there. Sophie seemed to thrive during her times in California, so my husband and I thought it might be good to just move out temporarily to give it a go and commit to treatments twice a week for as long as it took. When he got a transfer and promotion with his job, and his company actually paid for our move, it seemed destined. Still, we didn’t expect to stay forever, but one year turned into two and then three — and now we’re working on the seventeenth!

4.  Did Sophie’s disability affect your decision to have more children?

Yes, it did. I’ve written quite a bit about that, but deciding to have another child was both terrifying and entirely impulsive. I knew that I had to have more children. I wanted more children. When Henry was born and developed normally, I began to think that I should have at least another so that we weren’t always defined as the family with one disabled and one not — that sounds terrible to me now, but at the time I wanted Sophie to not only be a part of a larger family (more people to love her!) but also to give Henry support as we aged. That kind of thinking came much later, though, when it became more and more apparent that Sophie would be dependent on us for the rest of our and her life.

5.  If you could go back and tell your younger self anything to prepare her for the parenting experience ahead of her, what would you say?

Hell, I don’t know. Run away now to Bora Bora and don’t look back? In all seriousness, I’d probably advise my younger self to get marriage therapy and individual therapy sooner. I’d accept help — any kind — and I’d exercise more.

Thank you, Elizabeth!



4 thoughts on “5 Questions for a Parent of a Child with a Rare Seizure Disorder”

  • What an honor to be interviewed here, Tanya! Thank you! I should have said as well, in answer to the last question, that I would tell my former self that I would know love in a way that I never might have, that I would find inner strength during the darkest times and that my daughter Sophie would teach me far more than I could ever teach her about love and life.

  • Elizabeth, thank you again. I am forever in awe of you.

    Ilonka, thanks for being here. Your support is always invaluable.

  • Great interview! I often wish we had had a third for those same reasons, but cannot imagine how we would have pulled it off.

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