Zika, Microcephaly, Autism & Ableism–In Which I Address My Fears

Dear Lily June,

Because you were born at 36 weeks, and you are now nine months, you’ve spent as much time, if not more, outside of my body as you were in me. This is mindblowing for me to consider. I hold your ever-growing body up next to my belly and imagine what it would be like if you were still, at your size, inside of me. You’d be able, at this point, to kick your way right through me. It’s not a pleasurable fantasy, Lily.

And yet, there were times early on when you’d cry and cry as a newborn, and as a terrified deer-in-headlights new mother, I’d wish I could put you back into my belly. In my womb, I knew exactly how to provide for you. I’d simply rub the stretched skin drum of my tummy and eat. I’d sing to you in the shower, read books to you in bed, and try to quell my swelling anxieties that something could be wrong with the baby body I couldn’t see.

Some part of me thought, once you were out of me, especially near the end when preeclampsia threatened us both, I could breathe a sigh of relief. I thought I could abandon the fears that you might be born too early, too frail. Or many worse things, Lily.

Turns out, when you’re an anxious person, you’ll always find a target for your anxiety. The following post is just a way to exorcise my demons of worry. I will say and get things wrong. I post this in public on purpose; I want those with more experience or knowledge than I have to correct me. And I promise you, Lily, by airing these fears to the public, I am trying to understand them, work through them, and be better than this. So I can give you the best I have to give as your Mommy.

***

We live in the time of the Zika Virus. Mosquitoes, especially in areas like South and Central America, Mexico and the Caribbean, sting a woman who is pregnant, and if she experiences any symptoms at all, they’re generally mild: a fever, a rash, joint pain, a slight redness in the eyes. What happens inside, though, is worse: Her child’s development is stunted, like a stutter rippling through the child’s mind. I don’t understand the science of thing, and far, far better minds than mine are working out the how’s and the what’s and the why’s.

What I understand are the images of the babies, with skulls at least two sizes too small, brains inside sometimes a tenth of the size they’re supposed to be, a condition called microcephaly. I understand the images of the mothers and fathers swaddling and holding their screaming babies, the families rent in pieces because of the pain and the stress and the poverty.

We were ready, Lily, to lose you once when we were told our chances were 5% that you couldn’t overcome my progesterone deficiency. I look at you, your skull the size, presumably, it’s supposed to be, and I think I have absolutely no right to worry. You are here. You are alive. You can smile as well as scream. You can wail, blink, sleep, eat your toys, stand, crawl. You are the pregnant mother’s dream. I know this. I repeat this to myself at night. Of course, every fear is relative.

***

There are 1,000 U.S. cases of Zika Virus each year. In contrast, 200,000 diagnoses are made a year in the U.S. of ASD, Autism Spectrum Disorder. According to the Autism Society, those with ASD make up 1% of the population, and new cases are discovered in 1 out of 68 American babies. According to the CDC, autism is the fastest growing developmental disability, and prevalence has increased by 6-15 percent each year from 2002 to 2010. You were born in 2015.

I Google new facts about autism and its symptoms almost weekly. I know this has more to do with my mental facilities than yours. I am obsessed, Lily, and I’m still trying to understand the how’s and the why’s of it, as well as what my obsession means.

***

There’s a lot of chatter, and I know enough about researching to know a lot of it’s misinformed. Some groups, from non-parent activists to non-doctor politicians, seem to think the rise in ASD’s prevalence is linked with preventative medicine and vaccines. Because I am not armed with the facts, and I have neither the money, the power, nor the medical degree to prove or disprove their theories, this is an argument I choose not to believe.

Others, some doctors and educators and historians and linguists, for instance, argue that ASD is not more prevalent now than it’s ever been, necessarily. They say it’s a matter of both terminology and diagnosis efficiency.  More cases only seem to appear when a set of symptoms is standardized and we know what to call that set. The push to call it a “spectrum” opens the umbrella further, and more and more cases are swept under it. The former academic in me finds this more believable, though not any more comforting.

***

What I’m most afraid of, Lily, is not who you will be, though that factors into it. I read some of Oliver de la Paz’s poems about his autistic son this morning, and what hit me hard about his descriptions of “the boy in the labyrinth” is that he seems so lonely. His experience of this world is so different from my own, I don’t know that I could work my way through the maze to find him even if I had to. Even if he were you.

And that’s the heart of it, Lily. I’m a writer. Language is the way I understand and process everything. I know, my dear, that alone it’s a faulty tool, but when so much went unspoken when I was a child growing up in an abusive family, I clung to words as my escapist reality. As a teenager, I clung to words as my emotional therapy. As a young adult, I clung to words as a way to remake what I’d been through into art, and thus as a way to make all that pain redeemed and redeeming for me. And now, I cling to words as my way to interact with you, to love, to teach.

It’s the social and communicative challenges of ASD that scare me most, and a series of questions cycle through me regularly:

  • What if I can’t find a way to convey to you what you mean to me? Will you know, if I can’t say it right, how much I love you?
  • What if we can’t bond because I can’t understand you, nor you me? What if we live in the same place, but exist in a different reality?
  • What will I do if this world isn’t built for you? What if its sights and sounds frighten, hurt, or confuse you? How will I make that right for you, so that you can love living?
  • What will I do if I had to fight those who would aim to bend you into the “normal” box and that’s all it takes to break you?
  • What will I do if other children are uncomfortable around you? How can I make them understand, as I do, your beauty?
  • How long do I have to learn what you may need before it’s too late for early intervention, and we find ourselves playing catch up? (My sister discovered your cousin Sully’s CP early and he still has a multitude of specialists he goes to weekly.)
  • What if I can’t afford the resources you need? (Again, your Aunt Loren has to work part-time to be a full-time resource for Sully, something I can’t do as our student loans make my not working a financial impossibility.) What if I focus too much on “fixing” instead of “understanding” and “aiding” you?
  • Does it make me an ableist to worry? Am I doing a disservice to all the incredible children, and all the incredible mothers and fathers of those children, with special needs?

There is so much in this world, Lily, that I want to show you. But this blog, the language I use and the stories I tell and all I’ve shared of my life thus far, what if none of it applies to you? What if we have to remake the world in your image, and I’m not smart enough or good enough to do it?

Will you be able to help me?

***

This could be maternal instinct, my prediction that something really is up. I can’t always get your attention when I want to (Is that ASD or your being a baby?). You don’t always seem to recognize your name (ASD? Baby?). You don’t always look where I point (ASD? Baby?). Your babbling and laughter are sometimes ever-present, but other times there’s a silence that seems disconcerting. You’re like a firefly, Lily: your light is a beauty to behold, but you refuse to keep it constantly shining. You pick and choose the moments that fit you to blink.

These are signs and symptoms that are small enough to mean nothing or large enough to reflect your new reality. But I don’t know, yet, how to read them, or you, or what it means for me to be your mother. I only know that I promise I’ll keep trying and learning, even if it means I’ll keep fearing, too. Whether or not you have ASD, I’ll try to keep in perspective that fears are a part of the process for every new mother. I think we all, Lily, are afraid of not being enough for our sons and daughters. I have to keep watching you, and hoping that what I see will lead me to what I need to do for you.

***

To all those parents of any children who are differently-abled, be it through microcephaly or ASD or any number of things that happen to the body: I admire you. I respect you. And if ever you needed me to, in any way that I could, I would help you. I promise to continue to read and listen to your stories, your blogs, your truths. You are raising beautiful children in hardworking and creative ways, children I hope someday will be Lily’s friends. Thank you.

Picture Credits:

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12 thoughts on “Zika, Microcephaly, Autism & Ableism–In Which I Address My Fears

  1. lindalanger6 says:

    My heart aches for you with all this obsessive worry, because I share it. I understand your worry about Lily. But remember, it was just yesterday that you wrote a wonderful piece about Lily’s accomplishments and the joy both you and she draw from them. She may not babble and laugh all the time, but we don’t either. Maybe she just wants to be quiet. Does she meet your gaze? I know when I did story I could spot the babies with problems sometimes….not meeting anyone’s gaze, not interacting at all with others. This probably won’t help much, my friend, but when I look at pictures of your incredibly darling daughter, I cannot see anything but a gloriously happy, well- loved little girl. I hope you get some feedback from people who know more than I. But know that I, another OCD worrier and Googler, am here, watching and listening, as you make your way through this.

    Liked by 2 people

    1. dearlilyjune says:

      Sometimes, Lily is emotionally interactive, but other days, she seems to withdraw inside herself. Of course, as an extreme introvert, I do the same, so maybe she’s just a lot of personality in a little body!

      I think it’s just the not knowing that kills me. If I knew what to do, I’d do it–whatever I had to. But the not knowing and the waiting game to see how she develops? At the same time I take joy in each step, I also worry!

      Like

  2. bitsfromheaven says:

    Hey there mama. Sounds to me like you’re officially in the moms with anxiety club. Also the new moms club, any moms club and finally the wtf is going on with the world club. I share your worries, as well as thankfulness. I can only give my side, but it’s something.

    We have a child on the autism spectrum. She is all grown up now, but still has unique challenges all her own. No matter what, don’t ever worry that you aren’t bonding with her. I worry more about our daughters ability to form meaningful relationships with others, but as sure as I am about our love for her, she is beautiful inside and out. One day she will find someone who loves all of her, just as we do. Not to say it’s always peachy good fun fun, but I cherish her, as you do LilyJune, to the moon and back…

    Liked by 2 people

    1. dearlilyjune says:

      Oh, the anxiety club is one I’ve long had a membership card to (as I just wrote to you about on YOUR blog). Thank you for sharing your experiences with your daughter with me; it helps to know someone who’s been there.

      I got blind-sided by so much when I was pregnant–my low progesterone, my preeclampsia, my nephew’s cerebral palsy–that I think I’m still waiting for the other shoe to drop, metaphorically. Of course, my personal anxiety ramped up when I lived through a tornado and realized I have so little control over ANYTHING.

      I just want to be a good mother. I just want to give Lily a good life and a happy family. It’s why I write these letters–to let the bad out of me and share the good. I hope she understands that someday. I hope, if for some reason these letters don’t speak to her, we’ll find another way.

      In the meantime, finding people like you who can help me keep things in perspective is priceless. I don’t know how to ever repay you.

      Liked by 1 person

      1. bitsfromheaven says:

        I never wear shoes, therefore there is no way to drop the other. I prefer slippers, having only recently upgraded mine to the water-proof variety. I cannot begin to tell you how much I too understand! My under one ‘ranger’ was born three weeks early, fluid around my heart, liver problems etc. and DNA testing, etc because he had fluid in kidneys and blood in his bowels in-uterine (probably not correct terminology) so uhhhh yeah! At least we can never accused of being neglectful 💜

        Liked by 1 person

  3. dearlilyjune says:

    Oh, the anxiety club is one I’ve long had a membership card to (as I just wrote to you about on YOUR blog). Thank you for sharing your experiences with with your daughter with me; it helps to know someone who’s been there.

    I got blind-sided by so much when I was pregnant–my low progesterone, my preeclampsia, my nephew’s cerebral palsy–that I think I’m still waiting for the other shoe to drop, metaphorically. Of course, my personal anxiety ramped up when I lived through a tornado and realized I have so little control over ANYTHING.

    I just want to be a good mother. I just want to give Lily a good life and a happy family. It’s why I write these letters–to let the bad out of me and share the good. I hope she understands that someday. I hope, if for some reason these letters don’t speak to her, we’ll find another way.

    In the meantime, finding people like you who can help me keep things in perspective is priceless. I don’t know how to ever repay you.

    Like

  4. bitsfromheaven says:

    Hi again! I wanted to mention that (and I say this with a bit of regret on my part for my kids) if you have family ask them for help to socialize LilyJune. I wish we had family near by and I truly believe my kids would have benefited immensely by having them around, and to take them into the world. They have the benefit of not having our issues and view the world as less of a threat and more as an adventure.

    Liked by 1 person

    1. dearlilyjune says:

      I wish we did have family or help around. Our closest family member is over an hour away, and with Lily being so young, it’s not a drive we’ve made often. I do want her to, as you’ve said, view the world as “less of a threat and more as an adventure.” I’ll have to figure out ways as I go to make that so!

      Liked by 1 person

  5. Patricia says:

    This breaks my heart. At a time when you should be basking in the sunshine that is your daughter, you are fraught with fears.If her doctor has not told you that Lily is below where she should be on the developmental scale, let go of your worry and hug Lily tight. Babies and pets (sorry to compare the two but they are both dependent on us) can pick up on our emotions. You and Ryan are loving and caring parents, you will love your child through everything. There is something to the saying “There is nothing to fear but fear itself.” It is good that you are voicing your fears. When I lived alone or was alone overnight, if I heard a noise, I would think of the worst thing that could happen. Once I faced that fear, there was no more fear. I have no problem being alone. I don’t know if that applies here but if you fear something is not right, check it out with Lily’s doctor. They know about mothers as well as children.🌻

    Liked by 1 person

  6. Debbie Diljak says:

    First-time mamas usually do worry a lot, so you are in good company there. That doesn’t mean you need to worry, though! Enjoy your small, sweet one, and since you don’t have family near, try looking for a mommy/toddler group to join in your area. If you can’t find one, think about asking another mom or two who have babies to join you for coffee or a meet-up at a park when the weather’s nice. It might help your anxiety, and LilyJune may enjoy it, too.

    Liked by 1 person

  7. Allie P. says:

    For what it is worth: http://www.sciencealert.com/researchers-have-reversed-autism-symptoms-in-mice-by-flipping-a-genetic-switch

    I’ve had my share of parent-noia. Although my logical brain read the stories that disproved a link between vaccines and autism spectrum, I still took the day off work to monitor my son’s reaction. It was one of those times I felt it was better to be cautiously paranoid than confidently wrong. I had all the fears you have. Unfortunately, they never go away.

    Liked by 1 person

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