Monday, March 31, 2008

Is it my imagination...

or was Jodi Picoult put on this earth to torment me?

She has a new book out, again. Again, it seems as though she's holding up a magnifying glass and torching me under it like an ant. Why do I read her books? Why do I cringe at the plot lines, even as I read on - engrossed?

I discovered Jodi, by accident, three years ago. I had joined a mother’s group through an area hospital. We met every other week in a conference room. There were snacks. While the mothers talked, the babies crawled, lay or sat around on the floor, depending on their various stage of development. The one thing we all shared in common was new motherhood. Some of us looked it. Others managed to pull themselves together for this biweekly event and actually looked presentable. I always admired one woman in particular who looked downright chic despite the little bit of post-baby weight. Naturally, her child was also dressed accordingly. A girl. She was a bit older. Maybe that explained it. She was a little more seasoned to the job.

A book group had formed among some of the women, and I finally ventured to join them one night. The book that month was “My Sister’s Keeper,” by Jodi Picoult. Nothing about the title prepared me for the story. It involved one sister being asked to save the life of the other by means of a kidney transplant. After years of being the medical solution for her ailing sister, first through stem cells, then bone marrow transplants, the younger sister finally reached her limit and said no. The mother responsible for orchestrating this painful family dynamic chilled me in her drive to keep her older daughter alive. Everything about the story hit too close to home and I felt sick reading it.

That night, I went to the book discussion armed with my copy of the book and a box of two-bite brownies to share. The host was so nice. I still remember how welcoming she was, and how she guided me over the phone when I lost my way. I was the first one there. Others slowly trickled in. They all seemed to know each other well. I felt new.

I can’t imagine this was a pleasant book for any of us to read. All of us there were new moms. Presumably each of us could theorize what lengths we might go to if our child’s life were at stake. As the night progressed, someone commented that they understood the mother’s feelings because their child had spent time in the NICU for a few days, and it was awful. I bit my lip. I cringed at the outpouring of sympathy the other moms expressed for the speaker. I cringed again at the thought of sharing my story as though it was some type of one-upmanship. This was not a competition of miseries. But it looked so weird that I sat there in silence. I just couldn’t make myself say anything civil. I couldn’t even make a mundane comment on the book. I suddenly found myself trying not to cry.

“What did you think of the book, Sadaf?” Our host asked.

They all turned to look at me. I tried to clear my throat and articulate what I felt about the story.

“This was a very hard book for me to read,” I began.

I sounded so melodramatic, even to my own ears. What an ass they must think I am. It just looks like I want attention. I tried again.

“I feel like the author demonizes this woman, the mother, who was doing everything she could to fight for the life of her daughter. And yes, in the process, it seems like she used her second daughter as a means to an end. She forgot about her, in a way. Who she was as a person in her own right became a secondary consideration to the welfare of her sick daughter. But I don’t think she ever stopped being a mother. When you’re in that position, when your child is dying, the only thing that matters is saving him. And you will do whatever it takes. Whatever. And if, in the process, you become something or someone you never intended, than so be it. All that matters is your child.”

There was an awkward pause that lasted as long as it took me to catch my breath and try to stop shaking. The women in the room stared at me, eyes demanding a follow up explanation. Before the silence could sink me any more, I spoke up again.

“I have some experience with this stuff, I guess. My son had a heart transplant when he was a baby and we went through a lot in the process,” I said, by way of explanation.

“I knew it,” the woman sitting next to me said. She sounded so pleased with herself.

“I knew you looked familiar. I saw you on tv. You were on all the news channels.”

I mumbled something, and scanned the room wishing I had stayed at home. Everyone had gotten so quiet. That sick feeling in my stomach escalated as it hit me how different I was from these women. They were all so normal and happy with their normal babies and their perfect tales of successful motherhood. I did not have one of those stories to share. Mine was some freak macabre brush with death that forever marked me as different. We could walk into a room together – Jordan and I – and pass for normal. But a few mundane questions later, and our reality would become known. He had someone else’s heart in his body. He would always have to take different medications to prevent his body from rejecting it. He would look just a little bit different. He would always battle the side effects of the medications. He would likely get sick from run of the mill things other children caught and passed on easily. His immune system was not the same as theirs. We would always have to be a little bit more careful about everything. He had been touched by death and it left a mark.

Everyone else had a birth story they could freely share. Our story was one of cheating death. From the labor and delivery, to the days spent in the hospital recovering – they had a mutuality in common with one another. Even the woman who described a two day stint in the NICU, could still look back on her child’s birth story as an episode neatly wrapped up. It wouldn't scar her or her child for life. There were no extra doctor visits, no twice weekly clinic procedures, blood draws, or medication for life. A minor blip on her otherwise perfect radar.

There I was in the middle of a book discussion about a mother who ruthlessly sets aside all ethical considerations in her quest to save the life of her daughter. And even as she is ferocious in her protection of one daughter’s life, it manifests at the expense of the other. The women in this room discussing this story hated her.

“She’s so awful”, they said.

But that could be me! That woman in the story was an extreme depiction of someone I knew I could have been. I knew it – not in that theoretical way one might imagine as they read about a character. I knew she was a reflection of who I could be because I had just come from that dead zone. There, in the hospital, witnessing what was happening to my son, I knew what it was like to fight for a life. Worse than that, I could understand perceiving another as a means to an end if it meant saving my son’s life.

Would I be lying if I said I never thought about morbid possibilities? Shall I give an example? Here’s one. That week in the hospital, while Jordan lay hooked up to heart-lung bypass machines, the city was hit by several blizzards. Snow piled up around us and temperatures fell. One little noticed story appeared in the metro section of the New York Times. It was a tiny paragraph about an abandoned baby found in a dumpster in the freezing cold. The baby was found dead. My first thought was shock and horror that a mother could leave her baby to die. My second thought was – I wish we could have had that heart after he died. It might have saved my son’s life.

At that moment, I shuddered at the person I was.

The book group meeting crystallized an awareness that was only dimly below the surface. Try as hard as I might, I was passing for normal. The reality was so different. I was not normal, my son was not normal. Our lives were anything but that.

None of these women were charting spreadsheets with the times they administered medications to their child, their reactions, their sleep patterns, the amount of milk the child consumed. None of these women were trying to teach their child how to breastfeed again because the child had been on a feeding tube while in the hospital. None of them had to wake the child up at various points during the day and night to accommodate medication routines. None of them held down screaming infants while phlebotomists poked their arms trying to find a serviceable vein. Had any of their children had EKG’s or echocardiograms yet? While they could laugh about first sounds their babies were making, I could think only of the first time Jordan opened his eyes after surgery. His first smile was in the hospital. Yes, he loved music and mobiles too – those were the first things that soothed him in his hospital room. He had little else to entertain him all those endless hours before we could take him home.

How could I explain any of this to these women? And the one who outed me so ruthlessly – what exactly did she expect from me? Congratulations for recognizing me on tv? Did she think I really wanted to be reminded of that? Did she think that ghoulish celebrity was something I enjoyed? Didn’t she understand how desperately I was trying to fade into oblivion? That tonight – this book group meeting – was something I had hoped might be a fun social outlet, a chance to bond with other new mothers – had quickly turned into a painful ordeal? I just wanted to get up and walk out. Instead, I sat there, and tried not to cry. I didn’t feel I had much to say anymore.

“That must have been so hard for you. I can’t imagine what I would do if I were in your shoes,” our host said.

No, I thought. You do not know what you would do had you been in my shoes. And now that you know the kind of shoes sitting next to you, you can go to bed tonight feeling better about yourself. Your shoes are clean. Mine have benefited from the death of another baby. My son has her heart, and he is alive.

Others began to slowly chime in muted sympathies - well intended sentiments to which I had to quickly devise appropriate responses. I did not want their pity. I would rather they hate me then sit there looking at me like this. I wanted to scream out loud. I felt sick as the sticky sweetness of their pity filled the room. There was no recovering from that, no graceful exit or segue into topical discussion again. I never returned to another book group meeting.

I’d like to say that as time passed, I grew comfortable discussing the topic of Jordan’s health condition. I refuse to call it special needs. It’s a health condition. It’s not a chronic illness or a disease. It’s not a disability or a quirk. It is what it is. I wish I could pretend it doesn’t matter, or isn’t anyone’s business. But the topic comes up from time to time. Thankfully, as he’s gotten older, it comes up less. I still haven’t learned the best approach to discussing it. On the one hand, I almost feel like I have to comfort the listener, who inevitably expresses shock at the sight of such a seemingly healthy, normal looking kid with such a deep secret.

Why should the topic have to come up at all? Unfortunately, it does. Whether it’s in explanation for why we’ll decline a playdate with a child who “still has a bit of a cold.” (euphemism for the kid is contagious – proceed at your own risk) discussions about vaccination schedules. (No MMR, chicken pox or flu vaccines for my kid, thanks. He can't have any live virus vaccines due to his immune system.)

This year, it came up in the course of enrolling Jordan in preschool. Medical forms aside, his chest scar raised some eyebrows. And then he missed a lot of days of school because he kept coming down with one virus or another – caught, no doubt, from another child at school. While the other child might shake it off after a day or two, my son would develop a high fever, lasting days, would erupt into a blazing red rash over his whole body, and inevitably succumb to a raging ear infection in one or both ears. Multiple rounds of antibiotics later, I could send him back to school – only to have the entire cycle repeated again. And his skin! His skin, a constant battleground since his transplant, was an endless source of fascination for his teachers.

“Why is he so red?”

“Mrs. Trimarchi, I’m calling to tell you Jordan has a rash all over his chest. Did you know this? Is he sick? Is he allergic to something? He seems so itchy.”

Of course I know this. For three years now, we’ve been struggling to control his extreme eczema that flares up frequently. After a year and a half of seeing a pediatric dermatologist, we were finally told that his eczema was caused by his medication. Did the dermatologist tell us this? No. She sent me on my way time and time again with admonishment to limit his baths and slather him in Aquaphor.
After yet another frustrating session with her, I brought up the matter with Jordan’s cardiology team. They looked at me like I was a complete moron.

“It’s because of his immunosuppressants,” they said.

“What?” I replied, as I turned to look at Jeff. Why had no one told me this before? Why did the dermatologist that they sent me to, not mentioned this? Why did she keep telling me to wash Jordan’s clothes in sensitive laundry detergent?

“Well,” the cardiologist continued,” We see this in the majority of our transplant kids. They all have eczema. It gets better as they get older, but it’s because of the meds.”

“No one ever told me this,” I said.

I heard the note of tension in my voice as I felt it in my throat. Jeff looked at me with that knowing glance of trying to prevent a fire already rolling through dry underbrush. Did any of these doctors understand what I had been going through all these months trying to solve the mystery of why my son’s body was covered in tiny red bumps, or why his skin felt so rough and scratchy? Did anyone realize all the different foods I had been experimenting with, in a process of elimination, to see if allergies were at issue? Did they know all the months I had deprived him of milk, thinking he was lactose intolerant?

It was the meds all along. It was just that simple. But no one thought to tell me, and in my layman’s ignorance of all things transplant related, I did not think to ask.

“The pediatric dermatologist you referred us to never told us that either.”

The doctor looked at her head nurse practitioner. They exchanged a glance.

“Well, weren’t you taking Jordan there for the infant acne? That seems to have cleared up, right?”

They covered for each other. All the time I had spent in a fruitless, tear-filled haze of worry and stress meant nothing. So what if no one told me his medications caused this skin condition. At least his acne had finally cleared up. After a year of trying oral medications, skin lotions, frequent bathing, and anything else recommended to me. Finally, we stumbled on the right prescription medication – Differin, and that cleared up the horrible cystic acne my poor kid had from infancy.

“He has eczema,” I informed his teachers, when they called to inquire about the rash.

“He gets it from time to time. We treat it with a variety of lotions and medication.”

“Should we apply something for him at school?” Another wanted to know.

“Um..I don’t know. I guess I can bring in some moisturizer to use during the day if the redness gets bad.”

“We feel so bad, he’s always itching,” the principal said. I heard implied criticism of me as his mother. Why wasn’t I doing something about this?

They just don’t know what it means to feel bad, I thought. They don’t cry over it the way I do at night. I brought in the moisturizer, and wondered whether any of them had bothered to read the medical forms I had painstakingly filled out when school began months ago. In it, I explained Jordan’s heart transplant, his medications, his immune system, and anything else I thought might need explaining. It didn’t seem like they noticed it. I thought the forms would do the talking and explaining for me. Apparently not. I would not be able to avoid discussion of Jordan’s back story with them. They forced it out of me.

It continues to be a real conversation stopper, I have to admit. Other mothers I have come to know and befriend, eventually learn of Jordan’s particular history in one way or another. It’s not the first thing I tend to blurt out when chatting with another mom at the park, for obvious reasons. It’s more likely to come up when we’re hanging out without the kids – over a dinner at an informal mom’s night out, for example. And inevitably, whatever happy mood we were all in over that round of cocktails comes to a pause as the new friend absorbs the news. I’ve learned to make light of it, and stress the positive aspects of the situation – like, he’s alive. I don’t dwell on the fear we once felt or the pain of living with so much uncertainty that first year. I always answer the inevitable questions that come up regarding the organ donor, and how that came about. And I try to avoid mentioning how she died, but I’ve never gotten away with that. Everyone always wants to know.

What I have found, over the years, is that our best friends don’t treat Jordan as an oddity that needs to be pampered and coddled. They treat the matter of his heart transplant as another unusual event in the course of a child’s life. The best of friends are even on the lookout for us, for little things like a cold they might have or a runny nose their kid might have, and warn us so Jordan isn’t exposed to another bug unnecessarily. It’s not that we expect to shield him from every germ out there. But it makes me smile knowing our friends care enough to think about it.

Over time, I’ve come to embrace what I call our normal. Or what passes for normal on any given day in our house. It’s not always pretty, but that’s okay too.

I was too harsh with myself that night in the book group. I was also too harsh in judging the women around me, and projecting my own insecurities onto them. It’s slowly dawned on me that we all worry how normal our kids are. Whether it’s the age they begin walking, to the lack of variety in their diets, to the number of words they are uttering by the time they are a year old. We all fret. We all compare. Inevitably, we all punish ourselves with expectations no child could happily meet. It takes a long time to learn to embrace a child’s quirky personality and unconventional behaviors, his health issues or his stubborn insistence on growing at his own pace.

I wish I knew all this back then. It’s taken a long time. I’m still trying to figure it all out. I hope I haven’t messed up my kids too much in the process, but I suppose that’s inevitable. I’m their mother, after all.

In the meantime, I'll read Jodi Picoult's new book. I can't help it. I'm curious to see how much she gets right this time.

Post a Comment