Hope springs eternal –Alexander Pope
The question of hope.
Who carries the hope in the family? My old friend Tal who lost her son in a botched surgery says, “If you don’t have hope, you have nothing.”
Sophie broke her leg one summer about two years ago, either during or just after a seizure. She was standing with her babysitter, Mirtha, in the park when it happened. Mirtha is experienced with Sophie and knows what to do when she starts to have a seizure, but this one was awkward. Mirtha had to protect Sophie from falling and simultaneously lower her to the ground. Sophie was having what we call a “big one,” meaning a large, tonic episode. She gets a faraway look in her eyes and then they go round with surprise. At the same time, her head turns slowly, carefully, to the right as her right arm thrusts outward and her left folds over her chest. Her entire body becomes completely rigid and whatever air is in her diaphragm is expelled outward through her throat with a loud yell or groan. Sophie is non-verbal and it’s ironic that this sound is one of only two or so that she makes. Then the seizure begins, a stiffening and jerking, over and over for what seems like forever but is really only a minute or two. This time, as Mirtha lowered her to the ground, her tibia must have snapped. When the seizure was over, Sophie couldn’t walk, couldn’t bear any weight on her right foot, so Mirtha called me to come pick them up and bring them home.
Still, we didn’t think the leg was broken. It wasn’t swollen or even red. It didn’t look like anything was wrong. We figured that Sophie might have twisted her ankle, and because it was Friday, we decided that we wouldn’t call the doctor until we’d seen how she was over the weekend.
The weekend passed and she still wasn’t walking. She was also having quite a few seizures, more than usual. When we brought her to the doctor on Monday, he did an x-ray and said, “Wow. She has quite a break.” I felt sick to my stomach, realizing that Sophie had probably felt great pain all weekend but wasn’t able to express her discomfort. These are the kind of feelings, though, that I file away inside to deal with later. It’s how I cope with the moment. In the next moment, Sophie had a huge seizure, right there in the doctor’s office. This is what happened: She let out a groan and rotated her body to the right. Because she was sitting in her wheelchair, her right leg stuck straight out and stiffened and her arms bent at the elbow and stiffened as well. I bent down to support her face and head and to wipe away the fluid that comes out of her mouth but I was struck, suddenly, by the shape of her leg above the ankle, the broken place. The small area between her ankle and calf had pushed outward and looked like a backward letter C. The C was rigid, like the rest of her body and only relaxed into a normal leg shape when the seizure stopped.
“Wow,” the doctor said again, “That must really hurt, now.” He appeared both shocked and fascinated. I felt so freaked out by what had happened that I didn’t think about anything at all. Again, I have characteristically coped with moments like these by filing them away, almost like a camera click, something to preserve and then pull out to figure out later. The doctor had quickly recovered from this spectacle and assured me that Sophie’s leg would feel better once it was stabilized in a cast. Sophie responds to stress with seizures. The stressors can be anything out of the ordinary – impending illness, loud, sharp noises, and large crowds of people or changes in climate or sleep. There are good stressors as well. She has been known to have a huge seizure or many small jerking ones right before she begins eating. Because she loves to eat, we’ve always figured her brain can’t handle the excitement properly and misfires in anticipation of food. All of this is an explanation, of sorts, for why we didn’t act sooner to check out Sophie’s leg. The point is that Sophie’s life is pretty much consistently dysfunctional and there’s often no way of knowing if she’s “doing well” or “doing terribly.” And after twelve years of trying to decipher silent clues to her condition, I admit to certain laissez-faire.
. The doctor asked me what color cast I wanted for Sophie’s leg and then quickly cast it. We left about thirty minutes later, Sophie’s leg thrust forward in her wheelchair, her pink manicured toenails poking out of the purple fiberglass.
She was in the cast for just under a month, a surprisingly short time for such a break to heal. We attributed the quickness of the bone healing to the homeopathic remedy that Dr. C., the naturopath, had given us. The orthopedic doctor wasn’t interested in this bit of information, though, and told us that it’d be a few days before Sophie would probably feel comfortable putting weight on her leg. We left his office with Sophie still in the wheelchair, her leg pale and skinny, covered with long, dark hairs. A few days went by, though, and Sophie wasn’t interested in walking. She refused to put any weight on her foot and managed to scoot around her room on her knees, upright like a half-child. Walking is Sophie’s favorite pastime. We figured, though, that the lack of exercise over the previous month, coupled with a sense memory of the pain she’d had putting weight on it, was preventing her from really trying to walk. We decided to be patient and just wait. We continued to carry Sophie everywhere, transferring her from floor or bed to her wheelchair and then to the chair in the kitchen where she ate her meals. We’d lift her over the bathtub and place her on an orthopedic plastic chair and then shower her clean. She could stand up momentarily but would quickly lift her right foot up and lean on us, her left side hardly strong enough to bear her full weight of sixty-five pounds. Unlike a typical child, Sophie couldn’t favor one leg or hop to get around. She was even more completely dependent on us than ever.
One morning, my husband Michael walked down the hallway from Sophie’s room and into our little kitchen where the boys and I were sitting eating our breakfast. Michael carried Sophie in front of him, long-ways, so that her head bobbed over his own and her long, gangly body hung straight down, almost to the floor. She is like dead weight, though, doesn’t help or shift herself to help the person carrying her, and it’s awkward and uncomfortable, at best.
As her head with its wild morning curls bobbed over Michael’s own, he looked at me and said, “What if she never walks again?”
I think that I probably gasped aloud and the boys went silent. I probably responded with something soothing, then, for the boys’ benefit. Of course she’ll walk again. She just needs a little time. But what I felt was rising panic. I thought, NO! You can’t say that! You are not allowed to have doubts. I am the doubter in this family. My doubts of and fears for Sophie are yours to refute. You are not allowed to doubt as well because then where would we be?
It seems that Michael carries the hope in our family. This doesn’t mean that I don’t feel it as well, but I do realize how much I depend on Michael’s general acceptance of events to calm or even temper my own meandering thoughts. I knew in that moment that he, too, was capable of great pessimism and I felt frozen in self-consciousness. What if she never walks again? was certainly a question that had been floating around my brain for the past couple of weeks, but I hadn’t voiced it. It was just too much, too dark, too awful to think about. But it was obviously a possibility because Michael had asked it. The carrier of hope had asked it, aloud.
I took Sophie to our family osteopath in Santa Monica that morning, and Dr. J worked on her leg and pelvic region for forty-five minutes or so. She said that Sophie was really jammed up but that she felt certain she’d walk when she was ready. Occasionally, I’ll grab onto something hopeful and don’t know whether this is because I have some sort of instinct for self-preservation and am taking what I lack or whether I’m just inclined to wishful thinking. It may be hard to believe, but Sophie got up that afternoon, stood on both legs and then began to walk across her room. There wasn’t any drama on her part. She just could do it.
Does Sophie have hope? What emotions reside in her, primitive or otherwise? Was she just ready to get up and walk? Did Dr. J free up some kind of resistance in her structurally and was my own hope ignited because of my belief in the work of osteopathy? Who knows and who cares, really. Because Sophie is walking again, and hope springs eternal and foolish.
Elizabeth Aquino is working on a memoir about her experiences raising a child with a significant disability. She tries to work tirelessly as an advocate for not only her own children but for all those with significant healthcare needs. Her work has been published in The Los Angeles Times, Spirituality and Health Magazine, A Cup of Comfort for Parents of Children with Special Needs, My Baby Rides the Short Bus and several online literary journals. She is a regular blogger onHopeful Parents and Los Angeles Moms Blog. She also spends far too much time at her own blog, a moon worn as if it had been a shell.