It Should Get Easier

This was my second attempt to write a paper for the same social science journal.  The reviewers had been disturbed by my anger and felt that I wasn't giving the various healthcare providers the same empathy that I was demanding. This time i attempted to just describe a single day--an afternoon really--of care for my child and ALL of the thoughts, memories, experience that occurred during a three hour period. What I learned, unequivocally from this round of reviews, is that my voice has no place in that journal and that is okay with me.

Lily and I arrived at the children's rehabilitation hospital at 1:15 PM on a hot July day. I had been on the phone for most of the day with the pharmacy, Lily's behavioral therapist, the United State’s Social Security Administration, the public school audiologist, and our insurance company. Lily had spent the morning at my mother’s house playing with her little sister and six girl cousins.

I was refreshed from a long weekend for the Fourth of July holiday, following a busy week of Lily's doctors’ appointments, a surgery, and an occupational therapy session. It had been over a year since Lily needed new leg braces for her spastic cerebral palsy, and I was excited to get Lily walking a little steadier.

Lily had spontaneously outgrown her leg braces at the end of May, and I mentally berated myself for not noticing until Lily's calf muscle started to deform. The moment I noticed, I made an appointment to see the orthotist. An orthotist is not a doctor, but they are a licensed provider that makes leg braces or prosthetics. We had leg braces made by women named Gwendolyn and Luanne. We went to see Luanne, who was the orthotist who made the most recent set of braces. Luanne told me I needed to make an appointment, immediately, with the orthopedic surgeon because Lily could only safely wear those braces for a few weeks longer.

I was embarrassed and scared, so I didn't ask Luanne what would happen. I left Luanne’s treatment room at the rehabilitation hospital and went directly to schedule an appointment with the orthopedic surgeon, Dr. Baca, but couldn't get in to see her until July 1.  Lily had been seeing Dr. Sizemore but Dr. Sizemore had been diagnosed with Stage Four liver cancer, and handed her patients to Dr. Baca. I liked Dr. Baca enough, but I had really liked and trusted Dr. Sizemore.

Lily's leg braces, and legs in general, had been the most stressful aspect of Lily's many health issues. She didn't walk until she was four years old, despite three hours of physical therapy every week and three rounds of painful Botox injections. Botox is used with kids who have Cerebral Palsy because it helps relax spastic muscles and tendons by paralyzing them. Lily had four previous sets of leg braces but I could never get her left foot to relax enough to fit in the braces.

After many failed attempts to find less invasive ways to loosen Lily’s left leg, Dr. Sizemore proposed the surgery to release the sheeth of Lily's calf muscle.  My husband and I had paced nervously around Dr. Sizemore's office when she first asked us to consider the surgery. That would've been Lily's fifth surgery in her four short years, and some of the previous four surgeries had taught me the unrelenting stab of regret which comes from sending my baby into an operating room with faith in the physicians, only to find that they are humans, and fallible. We had also seen friends who had allowed surgeons to perform orthopedic surgeries with disastrous results that left their children deformed and permanently immobile.

Lily had two brain surgeries when she was ten months old, to remove the right half of her brain in an attempt to control her intractable epilepsy. It was a simple decision because Lily had so many seizures, our only hope of keeping her alive required heroic efforts. The first surgery failed, so the surgeons had to go in a second time to remove a tiny bit more of her brain. The second surgery worked and she didn’t have any more seizures.

Lily also had two eye surgeries when she was 18 months old; the first eye surgery promised the hope of binocular vision if performed before the age of two. The second eye surgery corrected the failed first eye surgery, which had overcorrected her eyes and made them drift to the outer corners of her eyes.

Finally, I made the choice to schedule the surgery so Lily would have a real chance to walk. I was scared but faithful.

The morning before the surgery my older brother called. He was Lily's godfather, so I figured he was calling to wish her luck and a speedy recovery.

"I think some doctor wants a new BMW and is going to hack your kid up." I froze in disbelief as the breath left my chest.

"These doctors just want the money, and it is your job to protect her and not be doing everything the greedy doctors say." I could only muster hysterical screams and gibberish, dappled with an occasional phrase: "How dare you call me the day before her surgery. How dare you question me. You aren't at all of the doctor’s appointments. We take good care of her."

"I’m her godfather and I have to say something so when she comes to me when she is 12, and asks me why I didn't protect her from you, I can tell her that I tried."

"How dare you...” my voice trailed as I hung up the call and let the phone fall to the ground. With my hands cupped and patting my ears, I sobbed and moaned as my husband watched in confusion and disbelief. From the small fragments of sentences he could understand, he gathered that my brother had called and told me, as he so often had, that I had done something stupid.

Seconds later my husband’s phone began to ring. My brother called my husband to convince him that I was going to torture Lily so the doctor could get rich.

"No, it's not cool. I don't care if you are being honest and I don't respect the fact that you have upset my wife and that you are questioning our decisions for Lily. You don't know what you're talking about." My brother finally hung up.

They did the surgery; Lily healed perfectly. She wore leg braces, and walked immediately. I was grateful to Dr. Sizemore, but Dr. Sizemore had Stage Four cancer and Dr. Baca was the only other pediatric orthopedic surgeon in the city.

On July 1, Dr. Baca patiently explained to me that Lily would likely always need leg braces. She squeezed Lily's right ankle and held her index finger just above Lily's bare toes.

            "Touch my finger with your toes." Lily struggled, grunting and squirming, to flex her toes far enough to touch Dr. Baca's finger.

"See, she doesn't flex and we needs to flex to walk, and the leg braces help."

"I just have to check because there have been things we have done for years and then doctors scolded us for not stopping. But no one told us how long." I felt embarrassed and panicked, teetering on the edge of becoming all the other parents that doctors congratulated me for not being. I had grown accustomed to impressing physicians with my grasp of terminology and general wit. It was a regard I didn't want to lose.

"She needs the rigid brace, long on left, short on right, and I want a lift built into the brace."

"A lift? Really? The orthotist had us put a lift on her shoe before, and then we had to pay another $20 to have it removed because Dr. Sizemore said lifts cause hip problems."

"The lift has to be on the brace and the whole brace or else the toes tip forward. I will write it on the script." I explained that there had been a water leak the previous night under the radiology department, so Lily and I would have to come back for the x-rays to do a joint survey. Dr. Baca asked me to remind her assistant, Kathy, when we were done with the x-ray so that she could call me with the results.

After the appointment, Lily and I walked down the quiet, rainbow-lined, linoleum-floored hallway to schedule the appointment with the orthotist.

I decided to start by checking if a guy named Giovanni had any openings. Luanne often called Giovanni into the exam room to help her figure out why Lily's braces were causing her blisters. He was always quick and correct in his suggestions. I decided to skip Luanne’s mitigation and schedule directly with Giovanni. Luckily he had one opening on July 7^th, or else Lily would have had to wait until August, when she was already back to school, to get her braces.

I didn't think much about the appointment with Giovanni, because I was too busy concentrating on Lily's hand brace-that was on order-and buying a new brand of special shoes that were guaranteed on their website to be wide enough to fit leg braces. She also had behavioral therapy to help Lily learn how to follow directions, and an outpatient, sedated procedure to inject Botox into her spastic, and substantially smaller, left hand. I was preoccupied because my husband had made less money that month while we took a small vacation. One of the bills I still needed to pay from June was for the Social Security Administration.

When Lily was younger, I couldn't work and take Lily to all of her appointments. Also, the copayments and coinsurance from the insurance plan I bought from my employer equaled my monthly take-home earnings. In addition, many of the providers Lily needed to see did not participate with my employer’s insurance plan. I made the decision to quit working so that my family could fall below the poverty level to allow Lily access to better care with Medicaid.

In order to determine her benefit, Social Security used my husband’s income. He was self-employed, so Social Security would take his yearly tax returns and would divide the total by 12 months. Each February, I waited for hours at the Social Security office to submit copies of the freshly-filed tax returns. By March, our mailbox was pregnant with letter after letter from Social Security, with adjustments to the benefit. One year Lily’s dad made substantially more money, which rendered her ineligible for Social Security. Luckily, her name had come up on a waitlist for a different kind of Medicaid program that didn't factor the parents’ income into benefits. However, Social Security did require us to repay nearly $4,000 they had overpaid the previous year.

I had been calling the usual 1-800-number for weeks, but no one would answer. I tried dialing into other numbers, but no one would answer. I was afraid they would start to garnish my husband's wages or ruin our credit. And it would be Fourth of July. I didn't know if Lily would like fireworks, or if it would make her vomit from overstimulation.

After checking in at reception, Lily stopped in the playroom – an oasis for Lily between so many appointments. Lily loved baby toys but I had stopped allowing them in the house when she was six. I wanted her to be happy but also wanted to encourage her to play with more age-appropriate toys. In the playroom she went straight for the shelf lined with many moving, singing, lighted toys. She would gather them around her on the floor and would spin around and around, delighting in each song and sound, in absolute bliss.

I was reading a novel and did not notice that the 1:30 appointment time had passed, when Giovanni poked his thick, neckless head through the playroom doorway. His blue scrub uniform was covered over by a dingy apron with residue from old glue, and his stubby hands fumbled with several pieces of crisp, white paper. He didn't make direct eye contact with me; just a gaze through the corner of his eye, and as we walked, the transitional banter was light.

"Oh, good! You have a copy of the prescription. I just realized I don't have a copy and I was worried," I said.

"I have something, " he responded blandly.

"Well that is something," I replied, trying to salvage an appointment I felt was devolving after only 30 seconds.

Once in the room, I recited my understanding of the prescription while Giovanni struggled, through bifocals, to decipher it. Giovanni stood and leaned on a salmon-colored cabinet in front of us. Lily sat quietly next to me and played with her electronic tablet.

"Where are her other braces?"

"Oh, I didn't think to bring them… uh… she outgrew them months ago and Luanne said not to put her in them." This was a lie, but I assured myself it was okay. I panicked under the stress of not being able to get a handle on how to work well with Giovanni. Shame started to creep over my body as a red-hot sweat. I was sure my face was beet-red, but had little time to ruminate, as Giovanni pontificated.

"I can't do a lift on the brace. You put it on the shoe."

"No, no. Dr. Baca was clear about the lift having to be on the brace, not the shoe. Dr. Sizemore said the same thing the last time Gwendolyn, the orthotist at CAPS, put one on. They both said the lift on the shoe causes damage to the hip joint."

Giovanni scratched his scalp with the edge of his pencil as he shook his head and studied the script with a furrowed brow.

"But then you can't get the brace in the shoe with that much on it."

"We buy special shoes--" I stopped short with Giovanni's obvious disapproval.

"I tell people ‘you go to the sporting good store and buy the cheap –‘"

"No, no, we've tried and have never gotten her into shoes. We tried tennis shoes before and Luanne said they weren't firm enough, so we bought Slingbacks and they worked."

"I don't know. I mean, I can't make something that is not going to work," he said, unable to make eye contact with me as sweat beaded on his forehead.

At a loss and growing in anxiety, I offered: "I don't know. I'm not an orthotist or an orthopedic surgeon, but you ask seven orthotists and they give you seven answers, and none match what the surgeon says." He shook his head and scoffed as he turned to leave the room.

"Ah, I don't know about that but cool out here. I'm going to go call Baca and see – we can cast her in no time – let me call." Once Giovanni was out of the room, I dreaded the wait. I texted my husband:

"Orthotist just got shitty with me." He replied with a sad face emoticon.

Giovanni returned within a few minutes, to my surprise, and asked me to place Lily on the casting table. Lily had been playing quietly on her tablet computer since they had arrived in the room, undisturbed by the heated talk between Giovanni and me.  He placed cotton stockings on each of Lily's legs, filled a small plastic tub with warm water, and retrieved two foil-wrapped packages of fiberglass casting bandages from the salmon-colored cabinet.

"Baca is in surgery, so I will get the cast and then we will work it out."

Lily was moving her legs to the music on her electronic game.

"She's going to have to hold still when I do the cast," said Giovanni as he looked into my face. I wondered how many kids with disabilities he had worked with in his 30 years at children's rehab? What part didn’t you get that Lily might be incapable of holding still? Was this going to be one of those healthcare encounters where a professional blamed me for poor parenting when Lily wasn't cooperating? Would I have to explain that Lily was missing the half of her brain responsible for impulse control and following directions?

"Just do your fucking job!" I screamed in my head, trying not to repeat it aloud.

Perhaps Giovanni could sense that I was nearing the end of my patience, and his tone suddenly shifted. He began to sweetly talk directly to Lily for the first time.

"What color or pattern would you like for your braces?" he asked as he slowly wrapped the casting gauze around each leg.

"Dark sky and purple," Lily replied.

"An excellent choice. I like your style."

Once the casts were complete, Giovanni walked Lily and me back to the scheduling desk. He couldn't see Lily again until she was already back in school. Both Giovanni and I knew that wasn't going to work, because it takes weeks to get a child back into braces, full-time.  There were hours of adjustments and wearing schedules that have to be followed to ensure that skin breakdown doesn't occur. Tender child’s skin quickly blisters in the hard plastic braces. Giovanni made a special spot for Lily in an already busy day. I was grateful both and remorseful I had been arguing with him. I felt confused.

Was I right to argue with him? Was I wrong? Was I a good mother? A bad person?

On the way out of the rehabilitation hospital, I remembered I was supposed to tell Dr. Baca’s assistant that we had the X-rays done. I suddenly felt insecure and fearful about what had happened with Giovanni, and hoped Dr. Baca’s physician’s assistant, Kathy, could offer me clarity in addition to the results of Lily’s joint survey.

We had to wait several minutes to talk with Kathy and I debated whether we should just leave or stay, and whether I was out of line trying to talk to Kathy without an appointment. Was I crossing over into being one of “those parents” that healthcare professionals dread because they are needy and naïve?

"I just wanted to give you a heads-up that we had an intense appointment with Giovanni about the leg braces. He tried to call Dr. Baca but she was in surgery. I just want to make sure you guys can work this out."

"Okay, Dr. Baca will be in tomorrow and I will have her talk to you first thing," said Kathy in a placating tone. I, however, sensed an undercurrent of disapproval, but decided to thank Kathy and take Lily home.

I cried the entire drive.

"It should get easier the more times you have to do all this stuff," I thought.