Houston, We Don’t Have a Problem

“Are there any other problems you’d like to mention?”

We were with Fiona’s new neurologist. It was late. Almost five, and we were nearing the end of the appointment. We’d driven two hours to get to the children’s hospital, and the doctor had run an hour behind, and I’d colossally screwed up the appointment time for her routine EEG, which was supposed to happen before the doctor’s appointment, so we’d ended up sitting around idly for an additional two hours without getting the needed EEG. Needless to say, when the doctor asked me if there were any other problems, my brain was a bit mushy.

“Any other problems…” I said aloud while trying to keep Fiona occupied on the examining table. She wanted to stand. Which meant I had to support her hips and keep her balanced while she locked her knees and squealed.

Any other problems. I mulled over the possibilities. We’d covered the febrile seizures. We’d covered her one weird, non-febrile seizure. We’d roughly covered the delays, which were evident. What other problems did my child have?

Justin answered the question best. “It’s tough to say what’s a problem and what isn’t.”

“What do you mean?” the neurologist asked.

Justin explained. Fiona’s life is far from typical. She isn’t designed like the average child. So sometimes it’s hard to know what’s a genuine problem and what’s just an expression of her difference.

To which Dr. Neuro said slowly, “That is a very. Compassionate. Loving. Wise. Insightful answer. From a parent of a child with disabilities.”

My husband had perfectly encapsulated the trouble with the question. The problem with “problems.” What exactly were problems? What weren’t problems? As I helped Fiona squirm into and out of a variety of positions on the paper-covered examining table, I realized that I had spent the first year or so of her life trying to figure out the answers to those two questions, and fretting a lot in the process.

It began with her birth. She was 4 pounds, 12 ounces. Was that a problem? Doctors assumed it was. I was told to give her high-calorie formula instead of breast milk. I was told to keep her home for the first several weeks, which meant I would miss my husband’s priestly ordination, the culmination of a four-year road. I listened to doctors on the latter account and ignored them on the former. She got breast milk, but I never saw Justin become a priest.

This sort of problem? not problem? fear is common, I suspect, with any new parent. Before her diagnosis, I remember calling a pediatrician, worrying about poop frequency. Problem? Nope, the pediatrician said. Not a problem.

But once it was clear that Fiona wasn’t the typical baby, once we learned of her missing genetic bits, the answers grew foggier. Were her sensitive blue eyes blinking in succession because of the sun? Or was that a myoclonic seizure? I videotaped the faint blinking. Sent the video to the neurologist. He couldn’t say for sure. We never captured it on an EEG, and after awhile, she stopped doing it. We never learned if it was a problem.

Was her lack of steady weight gain a problem? Or was that “normal” for her? The geneticist said it was normal for her, but the pediatrician wanted bi-weekly weight checks. During one, Fiona started getting groggy. Freshly minted into the world of special needs parenting, I was on freakishly high alert. I was surging with adrenalin, all a panic over how to mother this tiny, mysterious person. And when I sat in the examining room with her, waiting for a nurse to come in and weigh her, holding her limp body, watching her eyes slowly close, I was convinced: some kind of seizure!

It wasn’t, of course. It was a freaking nap.

Months later, she started crying during diaper changes when I wiped her. Was that normal “I-hate-your-freaking-cold-wipes,-mother!” crying, or was it the sign of a UTI? Because kids with 4p- can have kidney issues, and one clue of an issue is a UTI. Maybe she had a UTI!

She didn’t have a UTI. She just didn’t want me to wipe her nether regions with something wet and cold.

Unfortunately, I couldn’t necessarily rely on experts to know what was a “problem” and what wasn’t. Case in point: During one of Fiona’s therapy sessions in Ohio, the occupational therapist harped on the way that Fiona held the fingers on her left hand. Fiona sometimes rested the middle finger on top of the index finger, like she was almost crossing her fingers in a sign of good luck.

“See that?” The OT said. “That’s not…” and she paused, perhaps rewriting the word ‘normal’ which I suspect was ringing in her head. “That’s not typical.”

She suggested we get a splint. She couldn’t get us the splint because that was outside her jurisdiction, she said, but she believed Fiona needed a splint to stop her from holding her fingers in this way. She said we could take Fiona to a hospital and they could construct a splint that would keep her fingers spread apart by force.

The idea never made sense to me. Really? A splint? My daughter is missing 120 genes. Perhaps an unusual way of holding her left fingers was just one way that those missing genes manifested.

I felt the issue would eventually correct itself. But in the coming weeks, the OT pointed out the fingers.

“How often are you massaging her hands?” she asked me, her mouth frowning and her brow furrowed.

“I don’t know. A few times a week.”

She scowled and said immediately, “You need to be doing it every day.”

After the OT left, I put Fiona under her play gym, went to the kitchen, slid my back against the wall, and cried. I was nursing Fiona, attempting to spoon-feed Fiona various new textures and tastes, changing her diapers, doing the four, five, six sessions of tummy time a day. I was carrying her in a front pack because I’d read from Dr. Sears that it was good for cognitive development. I was sticking her in her Bumbo chair and wrapping a giant scarf around her middle so she could stay upright and placing her in front of dangling objects so that she could grab at them, as the Early Interventionist suggested.

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I was reading books to her. Playing music for her. Singing to her. Dancing with her. Taking her for walks. (I was also working.) I maintained a long list of activities that the therapists told me I should be doing regularly with Fiona.

But no, I hadn’t been massaging her left hand with regularity. So the left-handed, cross-finger thing was my fault. It was a problem, and it wasn’t fixed because I wasn’t doing the work to fix it.

This belief went against my instincts. I could not stop every little atypical thing that Fiona did. I could not make her “normal.” To do so was to violate who she was. She was missing 120 genes. They are little architects, genes. When several go missing, the others do their best to create a person. But they can’t get everything exactly as they would have if all the genes had shown up to the meetings. Hence difference. Compensation. “Atypical finger-holding patterns.” She would not be the same as the typically developing kid. She’d hold her fingers differently, she’d spend longer amounts of time in this developmental stage and that. She’d need more response time. She’d really like music. She’d love people’s faces. She was who she was. She is who she is. I have learned not to problematize my daughter’s being. I have learned to dismiss the people who do.

A friend of mine once told me that he hated the world problematize. We were in graduate school, all of us surrounded by amped-up academic lingo even in such settings as a dank, grimy-floored bar. We used fancy words. We intellectualized. So one night, at the same bar, we were all listing the graduate school vocab that most got under our skin, and he said “Problematize,” and everyone scowled in agreement, including me.

But in this case, it’s a useful word. Problematize. To consider or treat as a problem.

I realized at some point in mothering Fiona that, if I chose to, I could consider my daughter’s syndrome and all its manifestations problems. Which meant I could problematize her entire being. She is not on the standard growth chart. She goes through phases where she doesn’t grow at all. Her sitting is wobbly because her nervous system is more challenged than most people’s. Probably because her brain is made differently. She still drinks formula, still can’t chew, still makes the same mmm mmm sound again and again, rarely opens her mouth to make vowel sounds, and fixates like no one else I know on nylon straps. She snakes them again and again through her fingers obsessively.

These are not problems. They are a part of who she is. They are areas my husband and I and her host of therapists work on with her. With time and effort, she will continue to grow, and her sitting will gradually become more stable, and she will someday, probably, eat enough from traditional food that she won’t need infant formula, and hopefully she’ll chew and, who knows, maybe vocalize sounds other than M. She might even put down those nylon straps one day for a different tactile delight. I can’t be sure. But I’m not going to “problematize” any of it. We work on it. We give her the best chance at moving from where she is to maybe where she’ll go next. But it’s not a “problem” anymore than it’s a problem that a typically developing 5-month-old baby doesn’t yet walk. It’s how they are made. And this is how Fiona is made. And none of her differences needs a splint, a binding device to make it otherwise, a device that says more about other people’s own needs to normalize my daughter, to jam her into a container in which she will never fit, than it does about my daughter’s differences.

Which has me wondering: What is a problem? Because, let’s get real here, we do have problems. The world of genetic deletions isn’t a happy fortune cookie saying of “She’s just different!” So how does a new parent tell what’s a problem and what isn’t?

Only days into Fiona’s life, I was changing her four-pound-something body into a newborn diaper—she was so tiny that I had to roll down the top of the diaper at least an inch and overlap the tape. I saw her spine. Through the fog of new-mother sleep deprivation, I noticed it wasn’t straight. It curved oddly to one side of her body. I chalked it up to the wacky flimsiness of being a newborn. But a quiet, steady whisper inside me knew something wasn’t right.

It wasn’t a panic. Wasn’t an anxiety-ridden, Nervous Nelly pulling her hair out. It really was a quiet, steady whisper. Scoliosis.

This, I later learned, was my gut instinct. A thing that, up until having Fiona, I had never realized could be so freaking wise.

After we had a diagnosis, I told her pediatrician about the spinal curve.

“Well, I can’t tell until she sits up on her own,” she said.

But how long would that take? Sitting independently?

I took her to a chiropractor. “Oh yeah, I can feel it,” he said. “You’ll need an orthopedist.”

Finally, I convinced the pediatrician to give us a referral. X-rays revealed a 30-degree curve. But the ortho said that all we could do was watch it. The curve wasn’t harming her at this time. But we had to keep an eye on it.

So now we watch it. Her scoliosis is no longer a “problem” because we’re doing all we can do for it, and it causes her no harm. It was a problem when nobody was tending to it. It was a problem when it wasn’t getting the attention I knew it needed.

Now, it’s not a “problem.” Now, it’s another manifestation of missing 120 genes. And when I cringe at it during her bath time, I know that’s just me, making it a problem.

On Fiona’s medical records is a diagnosis: Failure to Thrive. It’s a harsh term, not easy for a parent to hear. As a priest-friend of mine, a new father, recently commented, “It’s like they’re telling you your kid has refused to participate in creation.” I laughed. He wisely encapsulated the cruelty—and the absurdity—of the phrase.

“Failure to Thrive” in Fiona’s case means she doesn’t gain the weight that doctors expect her to gain, and I know it’s useful for insurance purposes. For arguing that insurance cover things like that infant formula we still give her. But I shrug it off as inaccurate for Fiona. It thrusts her beside a ruler that isn’t hers. She will never gain at the rate of a typical kid. That’s not how she’s made. Thriving for Fiona is measured by a different yardstick. No medical professional seems to have it. Instead, Justin and I have had to make it up as we go. Our current stick probably goes something like this: Is she happy? Is she progressing, however slowly? Is she either gaining weight (again, however slowly) or maintaining her current weight? Is her immune system handling illnesses? Again, is she happy? Do we feel in our guts that all is well with her?

If “yesses” on all fronts, then Fiona is indeed thriving. She’s participating in her own unique expression of creation. And our job, as her parents, is to see this and love this and continue to cheer her on.

Here’s Fiona at 9 months, thriving in the sun….

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4 thoughts on “Houston, We Don’t Have a Problem

  1. Heather, you and Justin are dealing with the issues or “problems” just like every other new parents. (Even though yours are more) No one knows better than a parent that something is not right or needs special attention. It does not matter if it is Zoe,Seth, Gregory,Alex, Breanna,Trevor, Camerin, Andrea, or Fiona, only you will know when something special is needed or needs to be addressed. The smile on Fiona’s face shows contentment and just how happy she is with her great parents. The star in her eyes is God saying I am a special gift .

  2. I swear that phrase, ‘what is a problem and what is just an expression of her difference’ made me nearly cry. I had to stop reading, go have a shower and think about it, then come back and read the rest of your post. It hit home right in my heart. My daughter Lyla is now 5 but when she was very young and undiagnosed, she was very unhappy and fragile. Close family and my husband were concerned that there was something wrong and I would say maybe this is just part of Lyla’s personality and we just have to learn to live with it. Of course then we found out that she has a rare brain disorder and has quadriplegic cerebral palsy but she was crying because she didn’t understand her body and she was afraid. Since then I still find myself saying, this is just part of Lyla’s personality or this is just part of Lyla’s impairment and sometimes we have to stop trying to fix everything about her that doesn’t fit with what we expect. For example Lyla will never walk, I am now in a place where that is fine by me. Walking would put so much unnecessary pressure on the rest of her skeletal system that it would do more harm than good. And yet still in the early years we persevered with a walking frame because of society’s obsession with walking. Maybe society needs to change its attitude to people who can’t walk instead of trying to change them and force them into their mould of what a person ‘should’ be able to do. Our kids are unique and have unique challenges and differences. We need to help teach society to celebrate these differences, (while admitting that sometimes they suck), instead of always looking to fix them.
    So glad I found this post and I’m looking forward to reading more in future x

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