Child-Sized Caskets

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I have been thinking about my son a lot lately. I have so few memories of him at this point, and I am trying desperately to hang on to every last detail. I know that memories fade with time, but realizing I can’t remember his sweet little voice, or his baby smell, or how soft his skin was, makes me unbelieveably sad. Planning his funeral was one of the hardest days of my life, and one of the memories that sticks the clearest in my mind was the funeral director telling us that he wasn’t sure what to offer us for a casket. They had a baby-sized one, and grown-up sized ones, but “they just don’t really make child sized caskets.” I think more than anything, that statement made me realize just how unfair his death was, how wrong it was. Pumpkin’s life story will be told in another post, but this one will be about his death, and the immediate aftermath.

Pumpkin died on a rainy morning in July. We were miles from home, and 8 hour drive away. When the doctors finally gave up on him, gave up on ever bringing my precious baby back to his smiling self, I felt… Nothing. Later, when I was able to think, I was angry – angry at the doctor who hadn’t listened to me that morning when I told him I was sick, angry at myself for not being his voice, his advocate, and pushing harder for him, and angry at God or whatever superior being you believe in for letting something like this happen to my boy. But at that moment, when the doctors and nurses filed out of his room, hands covered in blood, heads hanging, tears running, I felt nothing. I knew before they said anything he was gone. For some reason, I had to see him, to touch him one last time. I asked them if I could go in, and they tried to discourage me from it. I insisted, and they told me to wait until they could clean him up some. I waited for what seemed like an eternity, and finally I told them I was going to see my son, NOW, and if they didn’t like it, I didn’t care. I pushed past them, and sat by his side. A nurse stayed in the room with us, standing at his head, holding a towel. She kept wiping his mouth, nose, and ears – the blood was still oozing out of them, both from where his organs essentially dissentigrated, and from the massive transfusions they had given him in a vain attempt to raise his white blood cell count, to give him SOMETHING to fight the bacteria that raced through his body. I remember resenting her presence, thinking that this should be a time for us to be alone with our baby. I had wiped his bottom, his tears, and all his owies, surely I could handle this last task on my own without her help. My husband sat by his side, sobbing out his broken heart, clinging to Pumpkin’s hand like it was a lifeline in a stormtossed sea. I remember crying, for a little while at least, and then I remember just standing there, trying to absorb the fact that I was going home without my son. I don’t know if tears were still flowing at that point, but I think they were. I don’t know how long we stayed there by his side before I started to get restless. I couldn’t stand there any more, our son was gone, what was the point? I remember telling my husband it was time to go. I remember how he didn’t want to, and oddly, I remember being jealous of him, that he could cry and feel so deeply. I couldn’t feel anything any more. I wanted to, I tried, but there was just…nothing.

Pumpkin’s main doctor led us to a small room down the hall from the ICU. Someone handed me our baby, the nurses had been watching him while we waited and hoped and prayed and loved. The doctoei shut the door, told us to sit on the couch, and he sat in a chair next to us. Then he completely broke down, sobbing, railing at the unfairness, the injustice of this. I remember comforting him, telling him it was ok, it wasn’t his fault, he had done everything he could, and we were grateful for all he had done. I remember feeling the irony of the moment, thinking it should have been the other way around. He asked us a few questions, the standard death questions I suppose, although I don’t remember now what they were. He asked us if we wanted to donate his organs, and before I could say yes, he said nevermind, we couldn’t do that because there was nothing left to give. I don’t remember how long we stayed there in that room. I don’t remember leaving the hospital. I vaguely remember trying to find our car in the parking garage. I remember calling my mom, although I can’t remember exactly when I called her. I think it was while we were in the garage, but it might have been on our way home. We left the hospital and went to the Ronald McDonald House a few blocks away. Word had already spread. Either that or they could see it written on our faces, see that our baby was gone forever. There were people in the lobby when we walked in, but there was nothing but silence and sympathy as we walked by. I think there was relief too, relief that it was our child and not theirs. I saw it, and wanted to be angry about it but couldn’t. I understood, even while I resented it. The manager stopped us, told us not to worry about the standard check out procedure, that they would take care of everything for us. I nodded and kept moving – what I wanted more than anything was to move, to do something, anything to keep busy. I packed our room up like a maniac, throwing things in bags, not caring what went where just as long as it was done and we could move on. I know my husband helped, but honestly, I don’t remember him much at all. I was in a bubble, isolated from everything around me. I know he was there, and that he helped, and I think wanted to be out of there just as fast as I did, but I can’t remember him being there. The drive home was long, and mostly silent. Even our baby, 16 months old at the time, was quiet all the way, like he could sense something wrong. I don’t know, maybe he knew. For a long time afterwards, he had a terrible fear of doctors, crying and trying to run away every time he saw a stethoscope. He had never done that before, so I can only image he knew more than we gave him credit for.

Planning his funeral was a mixture of emotions, but all still somewhat detached. I remember putting a lot of thought into how the cards should look, and what he should wear. We had a small, private viewing, mostly family and close friends. We didn’t stay for all of it. The funeral director was an old friend of my husband’s family. He assured us someone would be with our son all night, and that the funeral home would be open to anyone who wanted to come by, all the way up until time for the funeral. I gave my daughter, 8 at the time, the choice of going or not. She wanted to see him one more time, maybe to reassure herself he was really gone, that we weren’t playing some mean trick on her. I don’t really know what she was thinking, who can really understand the mind of a child other than the child herself? She walked up to the casket with me, hand tucked in mine, creeping slowly, like she was afraid something or someone would pop out and yell “Boo!” at the last minute. When I looked in, looked at my son, I saw a stranger. It was like looking at a very life-like doll. He was so still, and silent. Some people say that the dead look like the living, only sleeping. That doll in the casket didn’t look like my son. Even in sleep he never had that stillness, and the face wasn’t quite right. It looked like a slightly older boy, like a brother or cousin maybe, but not like Pumpkin. My daughter started crying, yelling something about legs. It took me several minutes to process what she was saying. The casket lid split in half, like most caskets I suppose. The half over his head was open, but the half over his legs was closed. There was a satin drape that hung down from the edge of the closed side, hiding his legs from view. She was convinced they had cut his legs off, that there was nothing past the drape. Not knowing why it was there, why he was arranged that way, I wanted to reassure her that they were still there by simply opening the other half and showing, but I was suddenly overcome by the terrible fear that she was right. Or that if his legs weren’t gone, they were somehow horribly disfigured, naked maybe, or at the very least left untreated, reeking of death where his upper half only looked lifeless. Luckily, there was an attendant in the room who was happy to open the other half to show her, and me, that his legs were in fact there.

I remember dressing that morning for the funeral. Originally, I had planned something dark, traditional. But at the last moment, I couldn’t bear to wear black. I put on one of my favorite outfits, a bright turquoise sleeveless top with white capris that hard giant flowers in the same color as my shirt. I don’t know why, maybe I was trying to convince myself that this wasn’t a bad day, that this was a celebration of Pumpkin. It didn’t work, and I remember later thinking that what I wore was the stupidest thing to care about when my son was being lowered into the ground. When we showed up at the cemetary, it was overflowing with people. My office had given anyone who wanted it the afternoon off to attend his funeral, but they had to have proof they were there. There were a lot of faces there that I recognized in passing only, people who I had sat next to perhaps, or stood behind in line for the vending machines, but never talked to. I resented them, I resented everyone for being there, and at the same time was in a nearly manic state, wanted to be the perfect hostess, wandering through the crowd, shaking hands, saying thank you, smiling and pretending everything was ok. We sat for the service, the close family under a tent, the others stretched out behind and beside us. It was a bright, sunny day, oppressively hot. Everyone looked uncomfortable standing in the sunlight in dark heavy clothes, sweating like mad, wondering if attending something so horrible, so sad as a child’s funeral was really worth half a day off of work. My husband’s parents were there, his mom and dad bitterly divorced for a number of years. His dad and new wife sat with us in the family area, and his mother refused, standing at the back, not wanting to be anywhere near her ex husband. I wanted to slap her, shake, her, scream at her for being so petty and stupid. This day wasn’t about her, it was about our son, her grandson. The pastor was a friend of the family. I had met him a few times before, and he was always jovial, friendly, and un-preachy. In rural Oklahoma, finding a pastor who didn’t use every meeting as an opportunity to save someone is a rarity. I was shocked, angry, and rather disappointed when he talked briefly about our son, our family, and then moved into a lengthy sermon. I don’t really remember what he said, something about how we needed to take Pumpkin’s death as a sign from God that we needed to be saved, washed in the blood, before it was too late. That children were innocent, and therefore could walk freely into Heaven regardless of their religion, but that us adults were sinners and needed to repent before we had our turn at the Pearly Gates. It went on forever, until everyone there was shifting uncomfortably in their seats, and those standing started drifting away. I think he finally realized he had gone on long enough and wrapped it up. And then everyone left, and the bubble was back, distancing me from everyone and everything around me.

I spent much of the next couple of months in a daze. A few things stand out. I was able to stay off of work for a while, so I stayed home with my remaining children, going throught the motions, mechanically cooking for them, tucking them in at night, picking up after them. My husband had to go back to work, out of town, so I was alone most of the time. I remember one weekend he came home, and I had something to do, I don’t remember what. I told him the baby needed new shoes. I was gone for most of the day, and when I came home, he was still sitting on the couch, still playing the same stupid video game. I was so angry, angry that he hadn’t got the shoes, angry that he was able to escape with his grief, to deal with it by escaping reality via books or games, and I was stuck in it, every day, taking care of things, making sure the kids were fed and clothed and taken to school. After the first couple of night home, I wasn’t able to cry any more. I wanted to, I felt sad, I felt this horrible pressure inside, like a bubble growing, waiting to pop, and then just slowly deflating instead. After his funeral, he seemed to lock Pumpkin away in a box. My mom had the last pictures of Pumpkin enlarged and framed.. when she presented it to him, he slid it under the couch. I wanted to hang it up, and he refused. He said that he didn’t want other people to see it, to ask questions, and then have to relive everything as he told them Pumpkin’s story. While I could understand where he was coming from, I resented him deeply for it. Our son was someone to be proud of, someone who a lived a life that was much too short but still had LIVED. I could not understand why he would ever want to deny that part of himself. My mom set up a meeting for me with a local reporter. She was hoping that if our story was presented to the community, we might get donations, something to help pay the funeral bills. And I think she felt as I did, that Pumpkin needed to be remembered, honored, cherished. I talked to the man, gave him some pictures of the kids, told him about our experience at St. Jude’s. My husband was so angry with me when that article came out. He was absolutely furious. He had grown up in the small town where we lived, he knew most of the people there. By putting Pumpkin’s story in the paper, in everyone’s face, people he hadn’t talked to in years crawled out of the woodwork. Walking through the grocery store, he was always stopped by at least 3 people previously – now it was 10. People who he had hated, who he had fought as a teenager, people who he still held grudges and resentments against came up to him to offer their condolences, and he hated every minute of it. He felt that our pain should be private, not shared with anyone. And more than anything, he hated the article itself. When I told Pumpkin’s story, I answered the questions the reporter asked, from my perspective. I didn’t intend for it to sound as though I was there alone, but that’s how it came out. It wasn’t intentional, but having made the story public, my husband felt as though he should have as much credit or more for taking care of Pumpkin. I felt that he should have his share, and I was surprised by how one-sided the article appeared, but there wasn’t much I could do about it at that point.

Our marriage had never been particularly strong, and Pumpkin’s death was really the final blow. I wanted to go back home, to Alaska where I had grown up. I hated Oklahoma, hated the heat and humity and snakes and bugs, and I wanted to go home to the snow, the mountains, the clarity. I made the decision to go, and he decided to come with me after a short visit there. He found a job, and we moved together, bought a house, took care of our kids, had another. Our relationship was almost non-existant. We lived together like strangers, going through the motions but feeling nothing. A few years later, I had had enough and finally decided I was done living in the fog, done hiding in the shadows, and I left.

People deal with grief in many different ways. Some people surrond themselves with memories, building a shrine and almost worshipping their loved one. Some people hide away, lock up the pain and think that if they never see it, never think of it again, it will go away. Some people take the death of a loved one as an opportunity – a chance to educate others, to make them aware of their struggle, and draw attention to issues most people never want to think about. Some of us drift in between extremes, not really belonging to any group, dabbling in each. I think that’s me – I want to be reminded of my son, I want his picture on my wall. I want others to know about what killed him, that there is this horrible disease that thousands of kids are dealing with on a daily basis, that funding and research and CHANGE need to happen to make this thing go away. And most of all, I want people to know my son. I want him to have not lived his short life in vain, I want to know that his life had meaning, purpose, that somehow his life has touched the life of others, changed something or someone for the better. I have not been able to be the advocate for him that I have wanted to be. I’m not sure why – I make tons of excuses, I’m sick, I’m tired, I have too much to do. But lots of other people have the same issues in their day to day lives, but are still out there, lobbying for research, running marathons, giving speeches, being voices for their children both dead and living with horrible diseases. I don’t know if it’s an inherrant laziness on my part, or if it’s that I’m afraid to fail, afraid that no one will listen, that I will be forced to see that my son really didn’t mean anything to anyone but me. I think it’s both. This is my attempt to give my children the voice they deserve. It may not touch the masses, but if sharing their story, my story, helps just one other person to realize they aren’t alone, then I’ve done something to be proud of.

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How do you define strength?

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This isn’t intended to be bragging, but over the last 5 years, I have been told by several people that I am the strongest person they know. It always makes me a little uncomfortable to hear. I don’t feel like a strong person. Most days, I feel tired, cranky, scared, lonely, and stressed. I constantly forget things, and more often than not can be found wandering the grocery store in my jammie pants with no idea what I’m looking for. In general I feel as though I am just barely keeping it all together, hanging on for dear life to a speeding train, looking more like an old Looney Tunes cartoon than a respectable mom of 5. When it comes to my children and their medical issues, I am terrified that I have missed something, or made a wrong choice somewhere along the line, and that I alone am responsible for keeping them alive and healthy – if I let go of the handrail for just a second, it all falls apart. I often rail against the unfairness of the world. My faith in God, or whatever higher being you recognize, is questionable at best.

I was complaining about this very subject to my mom recently. She said that the difference between a strong person and a weak one was that a strong person kept moving, in spite of the fear, the exhaustion, the anger, and the grief. I suppose by her definition, I am strong, but to me, I don’t see how anyone could do any less. When your child is diagnosed with a life threatening illness, you find a doctor, you get them treated, and you move on. When you bury your baby, you still have to get up the next morning, and the next, and the next – the world doesn’t stop turning, so how can you stop moving forward? I suppose you could turn to alcohol or drugs to dull the pain, to escape the reality of your life, but if you do, who takes care of everything else?

By my definition, strength is dealing with the things life throws your way, and then becoming an advocate, promoting awareness of your child’s condition, fundraising, lobbying for medical treatments, running in marathons, and still putting on your make-up, taking a shower, and facing the day with a smile. I can’t remember the last time I wore make-up, and I’m lucky if I leave the house in clothes that haven’t been peed on, pooped on, vomitted on, painted on, used as a child’s napkin, or covered in cat hair. But I keep going every day, and some days I actually manage to get it right.

What is your definition of strength? As the parent (or other family member) of a medically fragile child, what have you done that makes you proud of yourself?