When We Were So Strange

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I think it was difficult in the beginning because the sky had fallen, the worst thing had taken place – something happened to my child. Whether it’s a mosquito bite or a brain injury, mothers just worry. And when something significant happens to your baby, it is terrifying. Especially when it’s something you’d been quietly worrying about for months, in secret. I didn’t push because, after all, no one is going to say, “oh yeah, it does look like there’s something wrong with your 3-month-old.” Not even the pediatrician saw a reason to worry. I just KNEW. And then of all the things to bring her brain malformations to light, it had to be seizures. The worst. The doctors said she was going to die before she saw age ten. The grimness of our hospital visits had me convinced that she wouldn’t make it through the winter. I remembered being surprised when she made it to her first birthday. It seems so silly now that I see how healthy she actually is. But in that first year, I didn’t have any sense of safety anymore. Suddenly I felt like any disaster could happen at any time and I was on hyper-alert. I scrutinized my son for signs of problems because they said my daughter’s issues were genetic and I worried there might be something I hadn’t noticed. The worry just never ends. I didn’t trust my body, I didn’t trust my husbands genetics with mine, I worried it was something I ate during my pregnancy or that I didn’t eat, I didn’t know why this happened or who to blame. I desperately wanted to aim my blame towards something, just to know where it might come from again so I could keep my family safe. I felt like a weak little mouse carrying her babies through a through a forest of owls. I was confused, scared, and on top of everything people everywhere were telling me how “sorry” they were, that we would need to take some time to “mourn,” to “grieve.” The neighbor said he didn’t see any of “those kinds of kids” when he was growing up because they “hid that sort of thing” in his day. One of my friends said if it were his daughter he would put her in a home. My parents were heartbroken. They cried. Everyone kept saying how strong we were to keep going. How amazing we were to be her parents instead of, I don’t know – what – driving into the river??? It was crazy. But I doubted myself.

The very first time I tried to tell ‘the public’ about her was one of the most awkward experiences of my life. We were in a hotel restaurant overlooking the sea, in one of those retirement/vacation towns on the coast. Mark and Jack went to the bathroom and it was just Lydia and I sitting there at the table. I was cooing at her, holding her, and noticed a kindly elderly couple at the adjacent table. They were smiling at us. Grandparent-types, you know. The woman asked, “how old is your baby?” I told her. We chatted, as you do, about sleepless nights and wonderful baby smells. Things were going well so I decided to mention the discovery of her recent medical complications. This was the first time I’d said anything to strangers about this. I think I said something like, “well, this girl, she does have some neurological issues too.” They sat right up in their chairs and asked a few more questions like, “is she okay? What will they do?” These weren’t the things I had imagined that they were going to say. I thought they’d say something like, “oh yes, my grandson, he has down syndrome.” Or, “yes, yes, they are all blessings my dear, things will be different, but fine.” Instead, they looked increasingly uncomfortable as I went on to explain seizures, medications and further testing. By the end they looked almost gray they were so pale but I just couldn’t stop talking. I kept thinking they’d find something to relate to in what I was saying. Like, “oh don’t you just hate hospital food?” That sort of thing. But When I finished, the woman gave a long pause and then asked, “Isn’t there anything they can do?” This was and still is one of the most hurtful things anyone has ever said to me. I just shook my head and said, “well, no,” in total confusion as to why she would have asked that.

Mark and Jack came back to the table and I stood quickly to take Mark’s arm and steer him towards the door. “I think I just ruined that couple’s whole evening,” I whispered. I know they had ruined mine, along with any sense of being able to just, I don’t know, make small talk about my daughter’s medical issues? I don’t know what I was expecting. In those days I didn’t know it was so awkward or that we were so strange.

Now things are a lot better for us. We are still strange to some people, but we’ve found a place to belong in the local United Cerebral Palsy community. And there are my dear friends around the world that I’ve met online. I still want to scamper under the leaves sometimes, but it turns out that Lydia brings in more and more love to our lives. And I’m okay with that.

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