Revelation By the Outlet Shoe Store

After tolerating my bargain-hunting for onesies that would match her many awesome pants (courtesy of Grammy and Auntie), Fiona was ready for some play, so I pulled her out of the stroller and sat with her on a bench at the outdoor outlet mall. We’d just finished 9 days of triple-digit temperatures, and it was finally a gorgeous, eighty-something day. Shoppers passed by. Fiona stood propped up between my legs and craned her neck toward the sky to investigate the clouds.

But it had not been my best day. Not because we hadn’t found onesies—we had, and at steals of $2.50 each. Not because anything tragic happened. It hadn’t. In fact, that morning I got to write for two hours while Fiona napped, and for lunch she polished off (after two days of trying) the 6-ounce jar of slightly chunky, stage-3 baby food—a real feat for a kid with special needs who might have oral aversions and/or might not exactly know how to handle those chunky carrot bits. She munched. She swallowed. She smiled. She didn’t gag once.

No, the only thing about this day that made it not-my-best was me. And it started as soon as we wheeled into the first store, and I felt it, the familiar angst. I was about to buy size-3-month clothes for my 13-month kid. Again.

Fiona doesn’t grow out of clothes. She carrots out of them. That is, enough pureed carrots stain the collars that they need replacing. And something about this struck me as sad. Why? It’s not that big a deal, right? So my kid is very, very small. So every time I meet someone new, and they ask me, “How old?” and nod toward Fiona, the answer I give is always several months older than they can believe (and in time will be several years older). So what she’s small? I’ve counted Fiona’s blessings before and they are many: she can see, she can hear, her kidneys function well….

But I think there’s a biological imperative implanted in every mother’s coding to want her child to grow. Grow like a weed, kid. A fat, ever-widening, cheeky, thick-thighed weed. Grow grow grow. And kids with WHS do not abide by this imperative. Sometimes they even shrink. From time to time, they lose an ounce. Sometimes more. In the fall, Fiona will probably wear the same long-sleeved T-shirts that she wore last winter. They’ll fit her a bit tighter, but they’ll fit nonetheless.

“Racks are arranged by size and price,” the saleswoman said. “The fall stuff is against the wall. That’s on sale too,” she added, “in case you want to buy ahead!”

Buy ahead. I’d tried it before. I’d picked up outfits one size bigger than Fi was wearing in the hopes she’d fit them when the time came, and when the time came, she didn’t, and I stored them in a plastic bin. I now have an overflowing plastic bin. I thanked the woman.

I spent the rest of the hour hoping that the next salesperson and the next salesperson wouldn’t ask me the inevitable, “How old?,” which on some days I handle with honest, unabashed directness, but on this day I feared could choke me up. Because the answer leads to the inevitable, “Oh, wow,” and then, at best, “Well aren’t you petite,” and at worse, awkward silence as the stranger now stares at my daughter, not with that original smile and delight, but with suspicious eyes. I can almost see the cartoon bubble above their heads: “Why’s she so small? What’s wrong?”

I had to switch gears. I had to let her out of the stroller because she was steady whining, but I also had to switch emotional gears. To rejoice in my daughter and just sit and be. Which was why, after two onesies richer, and only five bucks poorer, Fiona and I found ourselves playing on the bench amidst the outdoor outlets of Greater Cincinnati.

There I was, holding her up in a supported stand, and there she was craning her neck to the sky. And then she leaned down on the bench, hands first as she likes to do, and stared intently at the seat. And then she pressed her hands into it. After a few moments she got on her knees. With my hands under her belly, she held a supported four-point for a solid fifteen seconds. Like getting on her hands and knees was the most natural urge in the world. Let me spell this one out: Unprompted, and after months of working on it in physical therapy, she held a supported four-point.

Look at you! I said. Oh my God! I said and beamed and teared up at my daughter, rocking a position I know a typical child half her age can achieve on his own. But when a typical kid holds supported—or even unsupported—four-point, it’s not a near-miraculous feat. It’s expected. Another checkmark on the usual milestones. When Fiona did it on this particular day, I felt elation. Pure joy. And I know that’s a catch-phrase, pure joy, but it was indeed pure, as in there was nothing else I felt in those few seconds. No worry about her size. No tallying up her next week’s worth of doctor’s and therapist’s appointments. Just rejoicing at this minor dazzling display on a park bench beside a shoe store.

I often hear parents of special needs’ kids say, “My life is better for it.” Meaning they genuinely feel they live richer lives as a result of their child’s health and/or developmental challenges. But in this, my first year as Fiona’s mother, there were a heavy handful of times when I did not feel this mantra was true, when I wished with everything I had that I could dig and dig in the dirt of some archeological field somewhere and discover, in my gloved hand and metal shovel, the missing pieces of the short arm of Fiona’s chromosome four. I’d stick those pieces into all her cells and “fix” her.

Namely, I did not feel the “My life is better for it” mantra the night I watched her lips turn blue as the clock ticked into the fourth minute of a tonic clonic seizure.  It was eleven p.m.  It was her second seizure. She stopped seizing before the ambulance came, but I spent that night with her in the E.R., and for a week after, I lived like I’d been hit by the emotional equivalent of a Mack truck, numb and joyless, feeling that no small number of daily delights could eclipse the agony of what I’d just seen in my daughter’s short breath, her repeated vomiting, her uncontrollable seizing, her bluer and bluer lips.

I realize that other mothers of special needs kids have walked with their kids through even more dire circumstances, that Fiona and her dad and I might be in for even tougher moments in the future, that maybe I’m a rookie and a tonic-clonic is really nothing to write home about. But I’m still relatively new to this. And blue lips do me in.

On the park bench on our shopping day, after she finally dropped from her supported four point, and after I pulled her up to standing, and while she got into playing with a crinkly bee toy that I like to pretend is her “favorite” but for which she seems to express only mild enthusiasm, I thought about the seizure. And in conjunction, I thought about the moment I’d just had—my deep, brief, tear-struck elation. The two seemed linked. The low making the high. The low of learning Fi might never walk creates the high of seeing her handle herself on her hands and knees, giving me a glimpse into a possibly crawling child, a possibly mobile child.  For this, I was ecstatic. For this, I was thankful. For this—not just Fiona’s four-point but my gratitude—I was blessed.

I don’t know whether my life is “better because of Wolf-Hirschhorn,” but I know that it is more intense. Fiona’s syndrome offers more regularly the striking realization that this life is fickle, uncontrollable, fragile. And it offers the unabashed raw delight in the minor victories I would have otherwise taken for granted. And so I think it offers more obviously the thing we all have—the opportunity to awaken to the profoundness that is always right in front of our eyes.

Also, those onesies I bought—they were size 6-months. Go, Fi, go.

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The Partial Glossary of Words Not to Use with a New Mom of a Special Needs Baby

The pediatrician’s generic “How To Introduce Your Baby To Solid Foods” pamphlet told me not to worry if my child spits out all the food on first try.  So, at Fiona’s 7- or 8-month mark, I readied her for her first spoonfuls of pureed sweet potatoes, and predictably, she thrust the bulk of it out of her mouth and onto her chin, giving herself a rocking orange goatee.

I reported this to a friend and I explained with relief that apparently “typically developing kids” push first bites of food out of their mouth too, that Fiona’s refusal to swallow was not necessarily a sign of “oral defensiveness,” not necessarily a warning of g-tubes to come, which many of Fiona’s WHS peers need for nutrition. I was relieved to know that all kids could have some rough patches with the complex consistencies of watered-down, blended veggies. And my friend, well-meaning and kind, said, “I guess you can chalk that one up on the normal spectrum!”

She said it cheerfully. But I cringed at it: the word normal.

This was a few months into Fiona’s diagnosis. I might have been a little sensitive. I’d already had the brilliant appointment with the geneticist who used all the right words. Words that made me feel that Fiona’s lot in life was not abnormal. Just different. Words like “genetic deletion,” which were descriptive and accurate, rather than “genetic defect,” which was evaluative and crude. Words like “cognitive disability,” which seemed surmountable and elicited compassion, rather than “mentally retarded,” which seemed to drop Fiona into a cardboard box, tape it up, and label it “Outcast” in Sharpie marker. After that meeting, I became astutely aware of the language surrounding Fiona, and of the power that language had over anyone who used and heard it. Especially me.

Weeks later, I talked with this same friend about another, not-so-positive doctor’s appointment, and then mentioned how there were some words that made Fiona’s situation feel manageable to me, and other words that didn’t. “There should be like a glossary,” I told her. “For doctors to read.”

“I’ll take that glossary, please,” she said, and then laughed nervously, which made me realize—maybe she knew she didn’t always have the “right” words for Fiona’s situation. After all, the territory of disability was new to her, and new to my many of my friends and family members, and new to me too, at least in this personal, intimate way. And while I was getting this daily crash course in disability perspective, others were not. Others might want some guidance on what helps and what hurts.

Thus! I present to you!

The Partial Glossary of Words Not To Use With a New Mom of a Special Needs Baby

Defective—Broken. A glitch in the gizmo. A gadget gone in the trash. An Out-Of-Order sign scotch taped to the vending machine. Something you curse and kick or kick out because it was meant to serve your coffee-drinking, lawn-mowing, smoothie-making needs and now it’s defective and now what will you do.

As in when this Slate.com article mentions “the burden of raising a gravely defective newborn.”

Synonyms: Imperfect, Flawed, Malfunctioning.

Alternatives: Disabled, Challenged, Different

Disorder—Chaos. Mayhem. The alphabet rearranged. Atoms disobeying the rules. Collisions. Catastrophe. Oh, I’m so sorry. A misfortune. The stars have fallen. The sky has fallen. The world is not as it should be.

As in, disease, disaster. Dis her. As in, “Her disorder keeps her from holding her head up.”

Synonyms: Malady.

Alternative: See Condition (Appendix).

Retarded—Backward. Stunted. Slow. The herb in your garden that just won’t grow.

As in, “Retarded cuz you can’t swing the bat, cuz your face should say woof, cuz you eat chalk from the tray, clay from the can, cuz you know why you are. Am not, are to. I’m rubber and you’re glue…” As in, “What are you? Retarded?” As in, “Rosa’s Law Asks Senate to End Term ‘Mentally Retarded.'” As in, “A doctor and social worker told [the family] that [their daughter] would not qualify for a transplant because she is ‘mentally retarded.’” (USA Today, January 2012)

Alternative: Delayed; Person with Cognitive Disabilities; Person with Intellectual Disabilities.

Appendix: Alternatives to the Partial Glossary of Words Not To Use with a New Mother of a Special Needs Baby

Condition

The state of her being: asleep in the cradle, arms cast above her head, eyes crescent slivers closed to the world of cars and commentary, little hiss of breath from nostrils the size of peas. A paused pendulum on the clock, holding this second of just is. Of is-ness. Take this. It is, her being, just fine.

How about you? Any words you prefer or wish to ban?

The Beginning: Four Pounds Twelve Ounces

Here’s the beginning of our story with Fiona:

“What a little peanut!” the midwife said as my baby dangled above my half-naked body. Peanut–it was the nicest thing anyone would say about the thing that fast became the focus of my baby: her size. Knee-deep in a birthing pool with my glasses off, I couldn’t see my child, nor as a first-time mom could I differentiate between small newborn and really freaking small newborn, of which my daughter was the latter. Then the nurses whisked her away, and there was silence, and when I asked if my baby was okay, repeatedly asked, please, is my baby okay?, the nurse with me wouldn’t answer.

*

But minutes later, our nameless kiddo was on my chest, nose smashed from the squeeze, looking wide-eyed and stunned by the world. All was well, and I was exhausted, and here she was, this person my body knew intimately for 40 weeks but a person I was nonetheless just meeting now.

*

But I could still feel it: the cloud of concern that hung over the room, the nurses’ worries, the why is she so small?, which spiked my stress hormones and is the reason I don’t have a good sense of what mothers mean when they talk about the post-birthing bliss if you go au-natural.

“She’s got good tone,” said the first pediatrician, holding her in his two hands, inspecting her back. “Her ears are typically set.” He kept looking at her. “The question is, why’s she so small?” I was sitting in bed, jamming a chicken salad sandwich into my mouth, reveling in the fact that, for the first time in 40 weeks, I was eating a meal without guarding my gag reflex. I was ravenous. It was the best chicken salad on the planet. I didn’t have the focus to think aloud with him.

Then he said, “maybe something genetic.” I tried to ignore this. It sounded surreal, foreign, untrue. Too rare. Not my story. Not our family’s story. Must be the medical community worrying for no reason. Still, we stayed the night just to be sure she was well.

*

The second pediatrician wanted to know about the placenta. Was anything awry about the placenta? Too small? Not equipped to feed wee Fiona, who now had a name? I had no idea. I told him I’d seen the placenta, and as it was the first placenta I’d seen in this world, I had no idea if it had been a good placenta or a bad one. It looked like a piece of rare meat.

If it’s not the placenta, he told me, then it’s the baby. “You see,” he said before offering a metaphor that every beginning doctor in med school should learn never, ever to use, “It’s either bad seed or bad soil.”

He meant, either I’d provided ninth months of bad nutrition for my baby, or my child began from a bad seed. Which made her a bad plant.

When he left, I cried. I tried to eat. The lactation consultant tried again to get Fiona to latch. I cried some more.

Then I decided he was just a jerk. This helped. And we took our release papers and fled the hospital.

We drove home slowly in the right lane at rush hour, surrounded by fast-whizzing trucks and SUV’s, and I sat in the back with my baby. The world seemed too hard and fast and sharp-edged for the softness of a newborn. I did not know then how lucky we were–that she’d had no complications, had spent no time in the NICU, was swallowing her milk, that she was well enough for all the doctors and nurses to send her home.

*

Three days after her birth, still stressed by her smallness and the uncertainty of it, we saw our family doctor. He said she was the most alert newborn he’d ever seen. “She’s perfect,” he said. “She’s the perfect size for her!” the nurse agreed. I sighed in relief. I now consider this visit a blessing: it offered us two months of ignorance, two months of normalcy, two months to see our daughter as a perfect being rather than a series of pathologies to address. Every parent deserves this. I thank God for a doctor’s cluelessness.

*

She wouldn’t latch. This became the focus of motherhood. Getting that tiny mouth around the boob. We tried, she refused, we drop-fed her, I pumped. But she ate. Two ounces at a time. And she never spit up. To burp her, I learned to bounce her vigorously. Other mothers warned me at first, then stared amazed at a just-fed baby, bouncing in my hands, keeping everyone’s clothes puke-free.

*

Two months old, she gave her first gummy, wide-mouthed smile. But beneath the fatigue of three and four feedings a night, I still had the nagging feeling. The echo of that first pediatrician’s concerns. “Maybe something genetic.” “Bad seed or bad soil.” Tests on the placenta had come out fine. “But the other doctor said she was perfect,” a well-meaning family member countered. Still, my husband and I made an appointment for another pediatrician and I sweated it for weeks. I think I knew something was coming, a shift in our parenting, in our lives.

*

Thus began the chain of appointments: the pediatrician found the heart murmur. We had an appointment for an Echo. The Echo found ASD and pulmonary valve stenosis. We got her blood drawn. I was convinced she had Turner’s. Then Noonan’s. Both genetic syndromes that made for small babies and heart anomalies. She gave us her first giggle in the meantime: On September 11. A child of irony.

When the doctor called with the results, we had a flight to catch in three hours. You know the story: short arm of chromosome four. We learned the name: something with a hyphen. Our mouths couldn’t get around that second word. Hirshel? Hersh what? Without having the time to dive into the internet, we left for a vacation with family, where aunts and uncles and cousins and great-grandparents met her for the first time, held her, adored her, loved her, and nobody said one thing about her seven-pound frame. She was almost four months old.

*

“So we have a special needs child,” I said to my husband, not really knowing what that meant, not knowing how limited, or unlimited, her life would be, but accepting it. My husband was steering the pram around the neighborhood. Fiona was sleeping. A strange calm descended. A calm I don’t always have, but a calm I go back to in the darkest times.

*

And then I tapped my fingers hesitantly on the keypad of my laptop and googled it, her syndrome.  It was past ten-o-clock, and I should have been asleep, and all the windows were dark, and the internet dealt me its cold, clinically-termed blows. I read about the seizure disorders. The kidney and heart troubles. Read the words “moderate to severe cognitive disabilities.” Probably read another way to phrase that, but I refuse to type it here. And I read that “some kids even walk and say a few words.”

Even. As though a few words and some independent steps are victories. This was before I realized that yes, they are. This was before I could appreciate, could even peek an inch into the seriously heart-expanding life I was in for. Instead, I wept with a kind of panicked, this-can’t-be-real fear, the kind that happens only a few times in one’s life, that grips you by the throat, that makes it so you think maybe you can’t breathe. You probably know the kind of moments I’m talking about–the ground seems to break beneath you, and there is nothing to grasp onto, nothing to steady yourself in a life that is suddenly alien and upside down and what is this? This death of your old way of being? The windows were black, the ground broke, the internet glowed with its surreal bad news, and I was floating in the darkness.

And then I read that we–my husband and I–had a 33% chance of losing her in the first two years of her life.

I went to the kitchen and sobbed, and she was sleeping upstairs, and the sadness was no longer the selfish reaction that my baby wasn’t, would not be perfectly able-bodied, but that my baby could suffer, that I already loved her so much my heart broke at the thought of losing her in the next two years.

My husband hugged me and said, “If our time with her is limited, then I’m just going to make sure that I love her the best I can, every day.”

It was wise, a lesson I’d learned plenty before. Cherish what you have, when you have it. It did not erase the sorrow, but it offered me a way forward. I wiped my eyes and agreed. She would be our blessing, no matter how long we had her.

*

The geneticist was a delightful red-headed cherub. That’s what we called him. The red-headed cherub. He opened a binder, showed us a diagram of 26 chromosomes, all looking like overly-xeroxed copies of broken, black ramen noodles. He pointed to number four. He didn’t tell us anything new. But he told us in a way that made me feel like this life of Fiona’s was just fine as it was. “A deletion,” he called it. Not “a defect.” “A genetic anomaly” rather than an “abnormality.” “Possible intellectual disabilities,” he said. Not “mental retardation.” “She’ll probably always be small,” he said. “She probably won’t learn to crawl or walk when other kids do. But we won’t put limits on her.” And then he and his superior outlined more tests–kidneys, eyes. They’d start with a swallow study.

The geneticist explained that swallowing was a relatively complex thing. That the mouth has to push the food forward in one way and backward in another way, and meanwhile guard the airway, and this was a difficult cognitive skill. So the greatest risk to Fiona right now, he told us, was swallowing. Could she swallow? Or was she silently choking on her own spit? Many kids with WHS silently aspirate, he told us. This could cause her lungs irreparable harm.

I nodded through all of this, and thought what a feat it was to swallow, and admired all the people I saw walking on the street today who were chatting on the phone and looking at the clouds and worrying about their finances, all while swallowing, automatically, any fluid in their mouths. And rather than bemoan that my daughter might not be able to swallow, I reveled in the amazement that was swallowing, and humanity’s overwhelming adeptness at it! We were geniuses out there! All of us! Swallowing!

Afterward, my husband and I took Fiona into the family restroom for a diaper-changing, where a floor-length mirror was warped on the wall so bad it could compete with a funhouse. “Look at this,” he said, all giddy, and I walked over and stood on the adult-sized diaper changing table, and got my head level with his, and saw that his forehead was ginormous and his mouth microscopically small, and my forehead was microscopically small and my mouth ginormous, and we laughed and laughed at the body and the craziness of difference and the okayness of those differences.

*

I’d later learn that plenty of parents have not been blessed with such a positive genetics appointment. For a child with WHS, the prognosis was once “doom and gloom,” as some parents say. Your child will not walk, will not talk, will have no personality. Will be a vegetable. This was what parents were told, and the outdated research sometimes perpetuates, even today. I know parents of three and four year olds–kids who are now saying mama and running around at lightning speed–who were told the same. Your child will be a vegetable, they were told. And now they boast on blogs and on facebook and in person that their kids have defied the doctors.

But my heart breaks for the parents who have to process that kind of news. And it breaks for parents of children who are more limited–perhaps nonverbal, perhaps non-mobile–but are still far from “vegetables,” a term that is ableist and crude and should never be used to describe even the most disabled of people, because what knowledge do we have to say we know when the divine lightbulb in our beings shuts out? And now I’m ranting. And I’ll stop.

I’m grateful beyond words that our geneticist was realistic, nonjudgmental, and open to the many possibilities that Fiona could have in store for us.  And that after he asked, “Is this your first?,” and after we told him yes, he offered a hearty Congratulations!

*

Everything a parent can take for granted got stripped away. This was not as painful as it sounds. We found ourselves rejoicing at the good news that the ENT doctors relayed: She could swallow her own spit! She could swallow breast milk, formula! She was protecting her airway! After a black spaghetti-like tube had been sent up her nostril and down her throat, and after doctors watched on video the two holes of her esophagus and her airway as she screamed through the feedings, the world seemed eternally optimistic! And it also felt surreal–we were elated over a bodily function most of us take for granted.

But this is our life now. This is our baseline. We rejoice over small things.

That day, we treated ourselves to Eggs Benedict at a fancy breakfast joint. And from then on, I repeat this to myself as a victory, as a reminder of all our blessings: she can swallow her own spit! Her kidneys are functioning well. She has heart anomalies, but they aren’t causing concerns right now. She can see well, she can hear well. She can swallow her own spit. Thank God. And now, our task is to help her develop as best she can. And love her.