Finding perfect love in imperfection

WaterproofMascara2 image
The author's son and daughter.

Waterproof mascara does not work. Trust me on this, because I am someone who should know. I've cried at hundreds of medical appointments, during so many holidays spent at the hospital that we were on a first-name basis with the ER nurses.  

"Happy Fourth of July! Wait, didn't we see you here on Mother's Day?", a medical assistant once said to me while fastening an ID bracelet around E.'s ankle. 

She could have died, but she didn't. She's as tough as anything, my daughter.  

Sometimes, she'll be throwing up-choking, even, a little bit, her eyes brimming with fat tears. And then one minute later she's shaking it to a Beyonce song, grinning. She dances mostly by bopping her head back and forth like an unburdened teenager; it's easier for her that way. 

When she was just an infant, we learned about my daughter's diagnosis, a rare partial chromosome deletion which occurred at conception. The genetic counselor flatly explained that she anticipated severe impairment. The extent of it was unknown, but it likely would affect her motor skills, speech and overall cognition. When asked if our child would ever eat typically or carry on a conversation, she stated crisply, "I can't predict the future." 

I still remember how the room was arranged, how it smelled like rubbing alcohol. And those hard plastic chairs. 

"It's a lot of missing DNA," she continued, shaking her head vigorously. The counselor, who I never saw again, handed my husband and I a thick packet of research studies detailing the handful of other children who have been documented with this specific genetic deletion.  

Right away, when we got home, I hunched over the kitchen counter to go through the material. One study featured a girl who was learning to tie her shoes at age 12. After that, I stuffed all of the crisp papers into a bright red folder. I still haven't read the rest.  

I had to grieve, and I did. It wasn't the grief of a physical death, it was something more invisible. It was the grief of having a vision of what our lives would be, and then having that upended. 

I don't know why I thought I was owed anything, especially perfection. It's a tough world we live in, filled with all kinds of injustice. Most of us have at least something to grapple with, something heavy.  

I had done all of the precursory genetic testing during the pregnancy. I also followed all of the standard advice. I took my vitamins, ate nutrient rich foods, and avoided too much coffee and mercury-laden tuna. I wanted healthy children, and based on the results of the prenatal screening, I expected to have them. 

Truthfully, I had hoped for near-perfect children, but I didn't even know it at the time. Ones who were born healthy and had a tendency towards nice manners, with an innate concern for other people's feelings. Quiet(ish) ones who would write me love notes filled with drawings of hearts and rainbows on clean sheets of construction paper, just like I did for my parents.  

My raucous, unexpected pair of humans are certainly beautiful. But not in the ways that I had anticipated. 

My 5-year-old son A. has more energy than anyone I've ever met. Now in Pre-K, he has what is likely a photographic memory-he can map out South America and Africa, identifying where most of the countries are located within each continent by memory. He's been reading for years now. When he was a toddler, he asked me a lot of questions about God.  

A. bucks against many daily, mundane tasks, like taking a bath or putting on his socks. Most days, I can out-fox him with exuberance and slapstick humor and good old fashioned limits. The harder days are full of deep breathing and splashes of prayer (whatever I can remember from Hebrew school) and actually, more complaining than I'd like to admit.  

He's my typical child. 

And then there's my youngest, E., who has the genetic difference. She's now almost two-and-a-half. She is just starting to walk with the help of ankle braces. Her words are few, although the list is growing by the day. She cannot tolerate food-so she lives off a slow drip feeding tube which pumps formula directly into her stomach. It runs nearly 24/7. She often throws up multiple times a day, which sometimes involves retching and gagging and, even bile.  

My brave-hearted husband and I have learned all kinds of skills in order to care for our children. We make extremely loving, slightly disorganized nurses. We measure out syringes of medication, we administer therapies, we do a whole lot of laundry. When one of the kids starts yelling or nearing a meltdown, we put on a great album, like the newest by Sylvan Esso or sometimes classic Miles Davis. It usually turns the whole thing into a dance party, but not always.  

True, little E. may not fit most American beauty standards, but she is gorgeous in her own way. When she smiles, her whole face is how June feels here in Minnesota: sunny, bright and full of potential. In those moments, which are many, everything is possible. With E. lighting up our kitchen, I feel as if even American politics might somehow work out okay. And of course, that's saying a whole lot. 

Because I'm a mother, I am surrounded by people who have children and/or who are expecting more. When I talk with these women about their pregnancies, they often say, with remarkable predictability, "All I want is a healthy baby."  

This hits me straight in the gut. Of course, there was a time, not that long ago, when I would have answered that question in the exact same way. 

But I don't see it that way anymore. Why is a healthy person the gold standard, the best type of person? Are there just two types of people- healthy and unhealthy? It's an insinuation, in a way-the good type of people and then the not so good ones.  

I just want to meet someone, anyone, who can say this and mean it, "I want whoever is there. I want what I have." And then keep on meaning it while the child grows into an adult. 

Because more and more, I want my son exactly how he is, with his wild brilliance, his hyperactive joy. On most days, want my daughter as she is too, feeding tube, special education plan, sunny smiles, and all. I want this life, not any other, even though sometimes it is terrifying.  

Witnessing my daughter's scrappy resilience every single day, how she keeps bopping, grinning, blowing kisses to people in the grocery store-no matter what happened the day or hour or minute before-it's like living with an inspirational speaker. Except she doesn't talk much.  

And she doesn't even have to.  

Emma Nadler is a psychotherapist and writer who lives in Minnesota. Her work has been published in Kveller, among others. She also keeps a blog called Itty Bitty Yiddies ( http:www// ) about her wild, sweet, unexpected family. 


Connect with us

Sign up for our weekly newsletter featuring issues and events in the Jewish world.