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Monday, December 15, 2014

Grief and other people

Before Riley went into the hospital in October, he had to have his teeth checked by a dentist. This extra dental appointment happened before each of his surgeries. When he was in the soft chair, reclined for optimal viewing and the dentist asked how he was doing, Riley gave with a matter-of-fact reply: “I’m having heart surgery this week.” The dentist and the technician exchanged glances before cobbling together a response. “Heart surgery? Oh, wow.” (To be fair, what do you say to an 11 year old who just told you that he’s going to have heart surgery in a couple of days?). That was followed by, “Well, let’s take a look…”

Since Riley and his brother have always been together--at every dentist appointment and pretty much everywhere else since C was born--the dentist asked about C. “Oh, he’s at school and probably due for a cleaning as well,” I said, “but we’ll take care of that on the other side of the hospital. Hopefully November or December.”

My son died
I used to have four children

Anyone who knows Riley knows that he died after complications from heart surgery. That is one of the reasons that I’ve avoided going anywhere. I’m afraid of seeing people who know Riley, who know me, who know my family. I’m afraid of seeing my sorrow reflected back at me. I’m afraid of seeing pity or relief that it was my kid and not theirs. When they ask, “How are you doing?” Do I say fine? Do I say terrible? I’m pretty sure no one actually wants to know I’ve lost of bunch of weight. No one wants to know that I’m still taking the anti-anxiety medicine and the sleeping medicine. No one wants to know that as soon as I fall onto the couch or heave myself into bed, my leg shakes uncontrollably. No one wants to hear how dividing Riley’s death has been. Before Riley died, I had four children. Now I have one dead child and one living child and my husband has two living children. No one wants to hear that spending time with the other children does not make me grateful that I have the other children. It simply illuminates that there are three instead of four. I suspect they do want to hear if I’m thinking about having another baby.

In the handful of times that I’ve gone to the store with my husband and the clerks have asked How are you?, I know they don’t really want to know. What I’ve wanted to say is this: “Not very well actually, my son just died.” I say hello instead. Hello seems less rude, although I'm not sure why saying that my son has died seems rude. When they say Have a nice day or Happy Holidays, I just lower my eyes. Social niceties are too loaded. For the children’s band concert at school, I wore a cap low on my face and avoided eye contact with hundreds of families. I peaked glances at the students, hoping to see Riley’s friends. I’ve missed them. I sobbed while they played and made the decision that I want to go the high school graduation ceremony for Riley’s class six years from now.

But C’s dentist appointment was different. The dentist falls into a small, special list of people who know Riley, but who do not know that he has died. This small list of people who will ask about him and I will have to tell them. I will have to speak this horrible truth. I even talked about it with C on the way to the appointment. “They will probably ask about Riley,” I said. “What would you like to happen when they ask?” I wanted C to have a say without leading him to want one thing or another. “What do you mean?” he asked. “Well, do you want to answer or would you like me to answer when they ask about Riley?” He thought for a minute and decided: “I want you to answer.”

The receptionist said hello when we entered the office. We sat down and I pulled C onto my lap. I felt less exposed with his weight pressing into my legs. I grabbed a magazine featuring several different kinds of pie and asked him to name each kind pictured. As he guessed at apple and pumpkin and chocolate, she leaned over the desk and casually planted the question I’ve dreaded. My eyes swung over to her face and my lips opened. “Riley died,” I said, holding her gaze for a moment. “Oh,” she said. I looked back at the magazine cover and squeezed C. A minute later, she leaned over the desk again. “How was your Thanksgiving?” And just like that Riley’s death had come and gone for her. For me, it was real in a new way.

11 comments:

  1. Most people with "healthy" kids are unable to comprehend their child's sickness or death - it scares them too much. I remember friends asking about how I dealt with my son's heart surgery at 1 week old and praised me for being "strong." I didn't understand it because it was just what I had to do and it wasn't about me. Having had both my kids with life threatening issues and a boyfriend die young, I tend to "rehearse" their deaths. It's a practice that allows me to be less demanding, more thankful and better parent and person. I wonder however if parents of kids w/ more severe defects try to forget - my friends seem to do that for the sake of the child. I am thankful you continue to reflect because that is all you can do.

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    1. I've heard the "strong" comment so many times during Riley's life, and I too have wondered what it really means. If it means I didn't abandon my child who faced life-threatening challenges and surgeries, then I suppose I'm strong. But I always figured it's what any parent would do. Then again, I remember talking about this with a doctor in the ICU. He told us that we'd be surprised at how many kids with heart defects are in the foster care system. I just have done what my child needs me to do and I kept doing it because he needed me and I needed him and that's what parents do. As for rehearsing his death, I've been imagining it his whole life. And as horrible as I imagined it, imagining it is nothing like living it. The permanence of it is crushing. With each of his other hospitalizations, it was horrible and horrific, but it ended. He eventually stabilized and came home. There is no coming home. There is no going back. This is forever and all I want is for it to unwind itself. For him to stabilize and come home, so that he can begin healing, so that I can begin healing, so that our family can heal and we can keep living and looking forward to Thanksgiving and Christmas and birthdays and graduations. For now, in the face of the comments that don't make sense, I keep encouraging myself to hear what people mean and not what they say.

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  2. Heart defects are awful and I constantly wonder why people are not more angry about them. The cardio who diagnosed me in utero said genetics loads the gun, environment pulls the trigger. I use that often to get people to think. Instead, they comfort themselves with angels or eastern "truths" that life on Earth is so fragile regardless (my husband even does this- maybe he's the smarter one). I feel that myself and my kids are entitled to a life. I get annoyed by the horror stories out there at the now over 100 (many small) centers that do cardiac care for prestige and to keep afloat. Babies and toddlers who die because their parents didn't know better - even sometimes the intelligent and wealthy ones. I know that's not consolation as it's so much harder to see children grow. I wonder when if ever parents feel ok that the child lived a good life - 20, 25, 30, 35? My boyfriend died the weekend he told his mother he was going to marry me. Never had kids - mine exist because he died. I was frankly too self-involved to even have a good marriage and his death changed that. My kids also exist because I flew home to LA from Boston on 9/10 rather than 9/11 and decided to have them because of it. We have no choice but to continue to live even if not the life we wanted.

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    1. It got harder the older he got because it felt like every healthy day was one step closer to surgery and him dying. I always wondered if his single ventricle had a finite number of beats. And the older he got, the greater his understanding for his situation and his limitations. His awareness was hard to witness. When he was born, we weren't sure we'd get seven days, but we did. When he was four years old, we thought we were heading for transplant within a year, but somehow we got to 11 1/2. Each of those days were a gift, but there would never been enough days. I hate that he will be a statistic in research papers...I wanted him to be the one who surpassed expectations and broke records. I'm sorry to hear about your boyfriend who died and your near miss on that flight. I've often thought that life all comes down to luck and luck couldn't care less about whether I'm a good person or a bad person or a mediocre person. How old is your child and what is his/her defect?

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    2. My son had coarctation and a hypoplastic arch. Surgery at UCLA - he's 12 now. We were in Davis for many years too and he went to Stanford before moving to New England. We have a foundation for his defect. I'm involved in health policy issues (was a big firm health care attorney for almost 20 yrs) related to poor outcomes at the now over 100 places that do peds cardiac surgery. Even with simple coarctation, there are kids messed up for life and heterotaxy or even simple HLHS kids have bad surgeries or are sent home to die. New England and California are a different story and its a shame because the people whose kids have simple or moderate defects could do so much good for research if they stayed involved. However, even for them, its traumatic (on a different level) and they don't want to think about it.

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    3. Were you a health care attorney before your son was born or was his birth the impetus that launched you into that career? I can see how it is hard for people to keep fighting for larger causes because sometimes the day to day is all we can managed. Or as least it was that way for me. And I remember meeting a family at Camp Taylor whose daughter had a horrible surgery right after she was born. The doctors said that she needed it immediately at it was performed by adult cardiac surgeons, poorly. But sadly, in that moment, when all of this is thrust upon you and you have no idea what you should do or what is capable at other hospitals, you just go with what is presented. And like you said, poor outcomes are common. Brand new unexpecting parents don't know what to do aside from say yes, please give my newborn a chance.

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    4. Yes I was an attorney at a big firm for almost 10 years when my son was born. I was also married to a doc for 6 years after law school. However, I was pretty clueless as well especially in the days before the internet. I was mindful enough to realize that Cedars didn't have the capacity to handle my son even with his moderate defect and transferred him to UCLA. On the flip side, because he was moderate, he was kicked from the CICU after one day only to have a life threatening MRSA infection in the crowded NICU. I try to catch people when they first find out so they can make the right choices and are prepared. After that it's like challenging their parenting skills to offer advice. People are getting a little more savvy because they can easily connect with others. However, I've seen folks put more effort into buying a crib or stroller than heart surgery. Part of it is too much trust in healthcare, lack of consumer information (we have no real stats) and, of course, fear and shock. However, places like Sutter (my former employer) shouldn't have videos on the web that they are one of the best for heart surgery. There needs to be some regionalization and organization just not sure how that is going to happen. It would be nice if more folks with kids with minor and moderate defects would get involved after the surgery is over. That's why childhood cancer is better funded.

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  3. Anonymous7:40 PM

    Strength is finding a way to love the life we have. Riley was strong.

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    1. He was happy. He had a happy life, and it was as normal as a life as we could muster given the undercurrent of doctor appointments, blood tests, long hospitalizations and unknowns.

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    2. Anonymous7:00 AM

      That makes you strong, too.

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