Category Archives: Death

Tribute


It’s happened again. Though Megan’s been in remission for going on three years now, I’ve stayed connected to the HLH and histrionics Facebook communities. I do it to pay forward the life-saving support I received when I was suddenly thrust into the “most wonderful group nobody ever wants to be in” (as some have called it). The group saved my sanity at a time that was in great jeopardy, and so if I can help some of the terrified and bewildered newcomers with a two minute message, it’s the least I can do. But as has happened far too often over the last three years, tonight I opened Facebook and learned that another precious little soul had lost his battle against that vicious killer.

“Baby” Leo was no longer a baby. A 5-year-old who loved Spider Man and nacho cheese Doritos, Leo had two bone marrow transplants in his young life, and spent more of that life in hospitals than at home. No one except those who’ve faced a BMT knows what horrific stress the process is. In addition to the very serious medical risks, you’re basically told to pack for the hospital for 6-12 months. How in the h%## do you pack up your life for 6-12 months? But BMT’s are only done as a last resort. When that’s your family member’s last resort, you simply go home and pack. That’s been baby Leo’s and his mother’s life for most of at least the last three years.

If it sounds like I know Leo and his mother, in a way I do, and in a way I don’t. I’ve never met either of them; they live in California, and I live in Arkansas. But for the last three years, I’ve followed their journey with both fear and hope. I saw pictures of a little boy’s signature thumbs up. I regularly “liked” his mother’s updates and commented encouragement from time to time. I followed his ups and downs, noticing that if the news was good, the posts were more frequent. When there’d been no news for awhile, I learned to dread the next update. I prayed to God for Leo’s complete recovery many times. Today, at 5:06 a.m., little Leo’s journey ended, and I find myself again sobbing for an innocent child I never met.

As grossly inadequate as it is, this is my tribute to Leo and his brave mother. I need her to know that her son, in his too-brief life, made an impact on a stranger. As I hoped and prayed for Leo, little Leo gave me hope right back. His thumbs up, smiling pictures were the pictures of a fighter. He survived challenges that those of us who knew how bad the bad news was didn’t think possible. And his mother…she was my hero. Always finding the positive, even in the tough times. Always fighting for her child, always working to give him a good life, in spite of the monstrous crap histio puts your body through. You are both my heroes. I am so very sorry for the loss of your Leo. It’s the world’s loss. What’s left now are the memories of an unforgettable little boy, and a faith that God has healed him completely at last.

“And tonight I will fall asleep with you in my heart.”  –unknown


Trophies


They played The Old Rugged Cross at my grandfather’s funeral; my mother had remembered him asking for it some years before. I’d always liked the song, one of the routine invitationals from the Baptist church of my youth. For the rest of my life, I will think of him wistfully when I hear it. Before we drove out to the country cemetery following the funeral, the Mennonite minister gathered our small family in a circle and prayed. He repeated the song’s refrain, drawing from it that we were the final trophies that grandpa had laid down. I’ll never forget the lightning bolt power of that simple analogy.

I’ve begun slowly laying down my own trophies. In a few years, we’ll be empty nesters…I intend to be ready. I’ve already weeded down the holiday decorations to only what we use every year. Twenty years of Disney VHS tapes have gone to Goodwill. I recently went through the only trunk of the four in our house which wasn’t empty. Jammed with papers and keepsakes, the minimum age of every item in there was 30, with an average closer to 50. I got rid of two large trash bags of cards and newspaper articles and momentos, but it still seemed full when I was done. I can’t yet bring myself to part with the doll my late aunt brought me from her trip to Russia, or the glass bells my late mother-in-law gave me when we were first married. I found the shoe box, which must be older than I am, containing the old plastic toys I played with at my great-grandfather’s house as a small girl. It is my only memory of him; he died when I was four. I got rid of the broken cow and small doll that were in the box, but I kept the handful of cowboys and Indians…they went back in their ancient shoe box in the trunk. When our son was here last month, we went through the last few boxes of his old things. That was hard:  it’s one thing when it’s a distant family member that you barely remember vs. your baby. It killed me to get rid of the memories he didn’t care to keep, but I knew it’s pointless to try to hold onto the past. I did quietly tuck away in my closet a few of the castoffs–a plastic bag of GI Joe accessories; a Hot Wheels carrying case, full; and a tiny pair of cowboy boots. Those memories now smile down at me from a shelf when I get dressed in the morning. Still, I know that one day I will part with them, too…I’ve only postponed the inevitable.

As I slowly draw closer to the end of my life, I will eventually part with my grandmother’s china, which a couple of times a year I go through the effort of washing by hand both before and after using to enjoy yet one more family dinner on. I’ll eventually give away the glass rocks in my yard which grandma got on a trip to Pilcher, Oklahoma with her retired sisters. Those eight siblings stayed close their entire lives, and the rocks make me smile not just because they’re pretty, but because they remind me of them laughing together at all of those family reunions. I will eventually, one by one, part with the treasures in every room of my house which are meaningful to me. As I do, it will be ok, because it will mean that I’m about to be reunited with those who gave them their meaning.

“Take care of all your memories. For you cannot relive them.”  –Bob Dylan


Children’s Hospital

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September is Histiocytosis and Children’s Cancer Awareness month

“Children’s hospital” is an oxymoron–not just two words that don’t belong together, but a thing that shouldn’t have to exist at all. Kids are supposed to be the healthiest among us. There’s something not right with whole buildings dedicated to things that go wrong with them.

Children’s hospitals are a bizarre proposition:  a place where the parents are as dependent as their children, depending on doctors for their schedules, their information, their hope. We’re easy to recognize in the halls, even without our special tags associating us with our VIP’s. You can tell us by our not-at-our-best appearance and by one of our standard expressions of fear, worry, or fatigue. We observe an assumed code of avoidance as we pass each other in the hallway:  because we don’t wish to be seen in the clothes we slept in, we grant each other the silent dignity of ignoring each other’s unwashed hair and tear-streaked face. Our zombie appearance barely conceals the grief and guilt and sheer terror on the inside. I often wept uncontrollably as I stepped outside of the hospital during our long stay, temporarily shedding the armor that I wore inside to protect and fight for my child.

Our children’s rooms are places of tenderness, but also of terror, where every day, every visit by a doctor has the ability to change our lives forever. The hallways are no refuge. Here other parents’ children are being moved to their next test or procedure:  bald, staring vacantly, heavily bandaged, hooked up to machines. We passed too many children’s rooms where, day after day, the only visitor was a nurse. A child without an advocate, without love, is the saddest of all.

There are also wonderful stories in these places, stories of healing and miracles and love. These stories must be what makes it possible for the dedicated staff to get up and face each day. Yet I am dismayed that these institutions are needed at all. I look forward to a place and time–somewhere, someday–when no child will ever hurt again.

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” –Revelation 21:4


Cemeteries

(Mennonite Cemetery, Kingman KS)

I’ve always loved cemeteries…to me, they’re places of peace. When I was ten or twelve, I’d ride my bike to the cemetery a mile outside of my small farm town and walk in the quiet under the shady trees. I’d read the barest of details about its inhabitants, carved into rock, and wonder what their stories were. Usually the only sound was the Kansas prairie wind, as few cars passed by out in the country. It was a peaceful place to get away, and ponder the meaning of life and how difficult it is to grow up.

My grandparents and great-grandparents are buried in country cemeteries…they’re wonderful places to visit. One of them is a couple of miles from my father’s boyhood farm in central Kansas. My great uncle is buried near my grandparents. He was never the same after his service in the European theatre in WWII. Grandma told me that he panicked in a foxhole, and his buddies had to hit him on the head to knock him out so that he didn’t give their position away to the Germans. She also called him “shell-shocked”, whatever that meant. Whatever happened over there, Uncle Donald spent his adult life in a nursing home. We saw him occasionally at holidays. I always liked his innocent nature, even though I’m not sure I ever had a conversation with him.

My great-grandparents are buried on a dirt road cemetery in Oklahoma, just across the Kansas state line. Great-grandpa participated in the great Oklahoma Land Run as an infant in a covered wagon. He and grandma farmed until he was 55, when his doctor told him to sell the farm and retire to town due to his poor health…he lived to be 100. They’re buried on the same flat, windy, treeless prairie where they raised their 12 children. It is a fitting resting place.

My mother’s parents are buried in a Mennonite cemetery in southern Kansas. If it hasn’t rained, you can navigate the rutted, hilly dirt road the four miles off the highway, passing by the spot where the one room school that grandpa attended used to stand. Though we’re related to a third of the cemetery’s residents, I can’t be buried there, as I’m not a member of the local church. It’s always been an exclusive club:  grandma harbored resentment her whole life for having to earn the church’s approval to marry grandpa, due to her suspect Nazarene faith. But she’s now a full member, buried next to her daughter, who she tragically outlived. I miss the three of them so much…even today, decades after they’ve been gone, I can’t stand on that quiet prairie without breaking down.

I don’t visit the cemeteries often, as I don’t believe my loved ones are really there. When I do, I don’t go for them–I go for me. I go to remember, to honor, to immerse myself in the cycle of life which foretells my own fate. I go to remind myself of what is important, though it is in the past. I still find peace in these places, though it’s a more mature peace than that of a teen on a bicycle those many years ago.

“Unable are the loved to die, for love is immortality.”  –Emily Dickinson


Pause


I’m not entirely sure why it was important to me to visit this spot where 49 innocent people died. I haven’t been able to read any of the stories of the massacre, especially of the calls made to mothers by loving sons who were about to die. I knew I would cry, and hard. The whole thing is utterly horrific. But still I had to come.

My Mennonite ancestors were persecuted and driven from their homeland more than once. In America, they became champions of social justice, facing danger to march in America’s civil rights movement. Until this last year, I would have said that LGBT rights was the last major civil rights battle left in this country. But the recent upswing in xenophobia and discrimination against entire races and an entire religion…one whose billion plus adherents share a common father with Christianity…proves that the war rages on.

And so I came, to honor 49 souls whose lives were cut violently short. I wept at the rainbow-themed artwork, the teddy bear and lit candles, the photo ID badge, the childrens’ crayon drawings. I came for them, but I also came for me. I came to make a tiny personal stand against hate and discrimination. I came, for my own humanity.

“We must develop and maintain the capacity to forgive. He who is devoid of the power to forgive is devoid of the power to love. There is some good in the worst of us and some evil in the best of us. When we discover this, we are less prone to hate our enemies.”  –Martin Luther King Jr.


Remission

sadness

I wasn’t sure I should write this. A large part of my brain told me to forget what I’d read, forget the pictures of the boy, forget the key and terrifying fact. Another HLH victim, this time a boy of 10-12. He’d had a stem cell transplant and had been in remission for two and a half years. Two and a half years. We’d clung to what we’d read, that most relapses occur within a year, a milestone we comfortably passed last fall. I’ve not let myself think about it since. I don’t think you can, or you go crazy.

I’ve read other parents’ stories, stories of very real PTSD. I’ve been blessed to avoid it, but not without scars. All of us parents whose kids have been critically ill bear them. There’s no way to fight at your child’s side for their very life for months without scars. There’s a whole year of my life that I either don’t want to talk about or which makes people uncomfortable when I do…our lost year. But it happened, and we’re still living with the long-term repercussions. There is no roadmap for crap like this. Sometimes you just get dealt a bad hand, and you just have to find a way to get through it.

Then every once in awhile…too often…you hear someone else’s story, a story of tragedy. And you realize that your own burden isn’t so bad after all. Rest in peace Mihir, and prayers to your loving family. Your remission…your healing…is now permanent.

“The life of the dead is placed in the memory of the living.”  –Marcus Tullies Cicero


Diagnosis

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Most people remember where they were when they heard about JFK’s assassination or the Challenger explosion or 9/11. But for us parents whose children were diagnosed with HLH, we’ll never forget the date of diagnosis for our children. The diagnosis was so life-altering that it’s seared into our consciousness, forming the beginning of our shared experience.

A parent on the HLH Facebook support page confirmed this recently when she asked if anyone else remembered their diagnosis date; post after post of dates provided her answer. I’ve written about our diagnosis day before, along with all of the important dates leading up to and following it. We’ve already begun anniversarying them, causing me repeated pause as I think about what our lives were like one year ago. At this point last year, we knew Megan was sick, but still didn’t know the upheaval that was coming. That same Facebook page also reminds me how profoundly blessed we are for her remission, as other parents celebrate anniversaries of very different outcomes. I offer them my sincere condolences and then feel terribly guilty, knowing that there is no way we can ever understand why our stories ended so differently.

These sobering reminders leave me feeling both blessed and sad…blessed for our happy ending, sad for others not as fortunate. Guilt won’t accomplish anything, I tell myself. These are the kinds of inequities which pose the big fundamental ‘why’ questions. All I can do is say a prayer for those who have lost and a prayer of thanks for our family. And keep going, determined to never forget how grateful and blessed we are.

“In three words I can sum up everything that I’ve learned about life:  it goes on.”  –Robert Frost