Why I don't like Halloween

     Halloween used to mean one thing for me, candy of course. All it was about was putting work in to score some loot. As years went by I enjoyed thinking of a costume, but wasn't that skilled or creative in that way. I would hang out downtown Front Street in Lahaina, one of the places to be for Halloween.

     When I was married and was a daddy, it was different. We didn’t believe in Halloween and its pagan origins and went to our church for their “Hallelujah Night” that had games, an evangelical message, and of course candy.

One Halloween afternoon before we left for church we got a knock at the door and there was a little princess with her mom. I didn’t know what to do. It was the first time in my life I had answered the door of my own home to a trick-or-treater. I said I was sorry, we were out of candy already. It wasn’t even dark yet and the mom didn’t buy it. She called me on it and I think we ended up giving the princess a packet of Top Ramin or maybe a juice box.

 But even then, Halloween wasn't complicated, just ungodly. The scary stuff didn't bother me, not until a few years later. 

Days before Halloween in 1999 at the same apartment complex I was playing outside with my kids. My daughter, Naomi, was home from the hospital after another round of chemo. I heard her suddenly shriek in terror and begin wailing. She ran into the back door and I looked at where she had been. A neighbor boy was pulling off a scary mask and smiling. He had popped up and frightened her and thought it was funny.

But it wasn’t funny. Naomi had been terrified because she had seen things like that before while lying in her hospital bed. They had been morphine-induced hallucinations, lions and monsters. Her mind, already traumatized with the thought of cancer killing her would create manifestations of her fears to be in the hospital room with her. Now, one appeared to her again as she was supposedly safe in her backyard with her siblings. This wasn’t being scared in a fun way, she thought she was going to die then.

I gave the kid a talking to. He had no idea and of course, had not meant to be mean or insensitive. But I told him that Naomi had to live with the fear of dying. I don’t think I ruined the kid’s Halloween, but I did ruin his fun that afternoon.

After that I never got it. How is being scared fun? I  won't fulminate against others for liking it. But I would ask them to give me a break too. I don't feel fun about horrific costumes and makeup. I don't like jump scares. Is it because everyone enjoys a good laugh when the fright wears off? What happens before the fright wears off? 

Now, with our five year-old twins, Halloween is fun and for them, it is all about the candy. We will go to our church on the weekend before the holiday for Trunk or Treat and hopefully just have fun and not get to sugared up. Still, despite my softening on Halloween, I still do not like the scary stuff. 

All that said, I hope you have fun doing what you enjoy, and I hope you get good candy. 

500 Words-day 5 (Cancer)

As part of my participation in My 500 words, I am posting what I write each day.

With most of my writing, I try to offer some kind of answer or solution to whatever I’m talking about. If it’s a life story, I might say how it changed me. I don’t have an answer today. It’s just what I’m thinking about.

     When Naomi was diagnosed with cancer, the doctors kept calling it Neuroblastoma, so I did too. When I called a friend out of state to ask for prayers, that was the first time I said it. “Naomi,” I said, then I paused with the realization. “Has cancer,” I managed to get out.

     Some people want to personify cancer or imagine it as some awful beast. They talk about battling cancer, fighting it as if it’s in a boxing ring, or maybe more accurately fighting it like a knight and a dragon. It’s all about winning the fight, losing the fight means losing your life.

     But I read something in of all places, a young adult fiction book. One doesn’t win over cancer for any other reason than the right medical care, the grace of God, and sometimes just pure luck. Sometimes those factors fall into place for people and the cancer is overcome. Other times…no.

So here I’m going to say something that I believe is true, no matter how utterly horrible it sounds.  Sometimes this happens: No matter how hard someone fights, no matter how much they want to live, and yes, regardless how much prayer is being lifted up, they die anyway. They die anyway.

Naomi fought like a furious animal sometimes when it just came to a needle stick. One time it took four nurses and me to hold her down. And when that happened, I couldn’t help but be proud of her. I saw what a fighter she was. If cancer was a personified being, she would have cleaned its clock. Naomi got superior medical care and responded to it. She went into remission twice. But the cancer kept coming back.

And prayer. We had friends around the world praying for her. I prayed all the time. Every time I saw a falling star I would say a prayer instead of making a wish. There was no shortage of prayer for her. But still, she’s gone.

I don’t like to imagine cancer as a monster to be fought. It’s human cells dividing and multiplying in a way they’re not supposed to. Cancer has no evil mind that malevolently selects victims, letting some live and taking others. And in many cases, it’s no-one fault that it happens. While plenty of cancers are brought on by unhealthy lifestyles, many others, including the ones that affect children, just happened.

And this week a family lost a wife and mom. There’s no making sense of it. She didn’t want to die, she got medical care and we prayed for her and she died from the cancer just the same.

I struggled for years with God over losing Naomi. And I finally had to just keep believing in His love and His sovereignty, regardless of what I felt. Some things, there’s no understanding. Why the fall of man included diseases that create empty chairs at the family table is something I will never understand.    

  

...even if it’s some encouraging words

     It was encouraging last week to get an outpouring of love as we remembered Naomi’s birthday. I am usually a little anxious when her birthday comes up. But I think I’ve discovered that if I can just be as honest as possible, the anxiety is cooled over and the day goes by with less angst than I anticipated. And while the saying may bounce around that “the truth hurts”, it’s still can be the best thing to say and to hear.

     Most people didn’t know how to react when they learned that we had a little girl with cancer. After Naomi was diagnosed, we got a lot of this: “I just can’t imagine…” followed by various things. People couldn’t imagine it happening to them, how they would react, what we were going through, all kinds of unimaginable things.

And while hearing these things became tiresome, at least people were being truthful. They were just saying what they felt, but I don’t know if it’s the best thing to say. It’s not the worst. Thankfully I don’t think we got “God’s will be done” or “The Lord giveth and the Lord taketh away”. I think the worst thing someone told me was right after Naomi was diagnosed. I was at a church gathering and he sought me out and went into a long story about the time his daughter was very ill and had to go to the emergency room. I managed to ditch the guy only to have him find me later and continue the story where he’d left off. I don’t think he was trying to one-up me. He may have been trying to tell me he understood how I felt or he may have been trying to say how bad he’d had it and made it through okay, so I might too. It was a confusing time thought and I don’t remember the point he was trying to make. I just remember not wanting to hear any more about hospitals, doctors, or hurting little girls. 

But as I said, I think he was trying to help. And today I feel thankful. That’s all most people wanted to do, help somehow, even if it’s some encouraging words. Some were just more successful than others. I think one of the best things anyone ever said to Prajna was shortly after we learned how badly Naomi was doing, shortly before the end. Prajna was at church for a weekly event and just devastated.

One of the most Godly women I think I will ever know was with her. This woman had health issues of her own, though you would never know it from the joy she radiated. But despite the positive mood she always had, when Prajna told her how bad Naomi was doing, our friend didn’t offer any encouragement. She said two words: “Oh… crap.” Two words, not the politest to say at church, and they said to Prajna more than anyone might imagine two words could say. “Oh crap” meant that it hurt her and upset her truly. That was a statement of both indignation and camaraderie. And it was an honest expression of how much she loved us and our family.

That was from a dear friend. But even a stranger once touched my life. I’ve never forgotten this at the other end of Naomi’s illness. Her hair had first started coming out when she was in the hospital. She had been hospitalized in Honolulu for an infection. She and I were in the departure lounge of the airport waiting to go home. Naomi’s head was bald around the sides, like a little old monk with a fluffy blonde clump right on top. And typical of her, she was cavalier about it, refusing to wear the little white sailor hat. So she clutched her blanket and played around the window, pleased as punch to not be in her hospital room hooked up to anything.

I watched the airport tarmac and kept an eye on her and tried not to be self-conscious myself about her appearance. A woman came and stood next to me and watched Naomi play. I tried to imagine I was disappearing. Naomi and I, we are not in the crowd anymore. No-one can see the little girl who obviously has cancer now. There’s no hiding it. So how about nobody can see us, okay? I don’t want to answer questions. I don’t know how long she has to live, I don’t even know how she got the cancer. Please just leave us alone. Leave me alone. Don’t talk to me.

The lady turned from Naomi to me. “How old is she?” she asked.

“Three,” I said.

“She’s beautiful,” the woman said. And that was it. She didn’t say anything and soon after that, Naomi and I were able to pre-board for the short ride home.

She’s beautiful, the stranger said. And I can still hear her voice in my head saying that. I remember the warmth of the sun through the windows and feeling that warmth at her words. Suddenly the world turned nice. When the woman told me that, I was reminded of so much more than my little girl was beautiful. I learned to believe that people are beautiful too.

Like Naomi touching so many lives, this stranger at the airport did too.    

The Sad Balloon

     I didn’t write much the week before last. This past week I did better, writing for three mornings. I think writing should be fun. Why else would I do it? I am really looking forward to National Novel Writing Month and have my story, Sidewinder vaguely planned out. But what I am working on presently is not so fun to write. One reason is that I am convinced that it isn’t that good right now. I am working on the first draft of my memoir and writing as much as I can remember, which it turns out is a lot. This first draft is almost like casting a huge mold that I will eventually carve down to size. Before carving it down, I have to make it big enough for its eventual shaping down. So I’ve been sitting down to write, many days knowing that what I am writing will never make it to the final draft, or even survive the second draft. Yet I feel I need to write it anyway.

     And now I am at the part in my life when Naomi had cancer but we didn’t know it yet. Naomi was finally admitted to Maui Memorial Hospital for tests. That afternoon I went to a grocery store to buy her a balloon. Last Wednesday I wrote about that day. And I learned some things about myself that I had not realized before.

     I used to be pretty withdrawn and bitter until I met Prajna. Having her in my life and going back to church helped me to come out of my shell and go back to being more amicable. I stayed like that for a long time. But years later, I found myself plunged into an abyss of depression and mistrust. It hadn’t happened overnight. It was clear that Naomi’s illness and the loss of her are partly responsible for putting me there. But when did it begin? Last Wednesday while I was writing, I think I found out.

     This is an excerpt from what I wrote. (I don’t blame anyone in that grocery store back in July of 1999 for anything. The passage is written in the voice that I was feeling at the time.)

Later that day I went to the grocery store to buy Naomi a Mylar balloon. I wandered through the crowded store. It was a weekend afternoon and the tone of the crowds seemed terribly cheerful to me. I got to the balloons and choose the most cheerful one. I was stunned. Touching it made my eyes start to well up. This happy Get Well Soon! balloon in my hand matched the world around surrounding me where everyone was happy. But it didn’t match my world.  How was this little balloon supposed to cheer up a little girl in the hospital?

I wanted to shout to the store. Didn’t anyone see what I had here? This balloon was for a spindly little three year-old girl was lying in a hospital bed, miserable and lonely, missing her brothers and sister. Didn’t they care about that?

I walked through the store with the balloon and felt everyone looking around and through me. A new thought came to me, or perhaps an old, old thought that I hadn’t felt for so long that I had forgotten it.

No-one cares.

It sure seemed apparent to me there as I walked through the store, feeling ignored. Emotional pain began to rise up in me. It took hold of my bones and weighed down my shoulders and spine. I was hurting, and no-one cared. Maybe if someone had come up to me that afternoon in the store, maybe if someone had looked at me and asked me who the balloon was for, I could have told them.

My little girl is in the hospital, I thought to no-one. We don’t know what’s wrong with her and she’s sad and miserable and the only thing I can do right now is buy her this shiny balloon and hope. I can just hope that maybe this balloon will make her smile just a little.

No-one spoke to me and the friendly casher rang up the balloon and bade me goodbye. I walked out of the store with that emotional pain still. With the balloon lifting up, something new was just beginning to pull me down. The thought that people are not going to be there for me. They didn’t understand and they wouldn’t be a part of my life. I was on my own.

On my own. That was where I had wanted to be for so long. If I was going to take care of Naomi I would have to be strong. And if I was going to be strong, I should not be relying on anyone else to take care of me. That was how it had been in my past, and that was how it was looking to be now.

Naomi liked the balloon. But it didn’t brighten her mood much. Later that day they told us that she would have an MRI the following day.

That was an unhealthy attitude. But I didn’t feel like that constantly starting then. Even the next few weeks had bright spots. When Naomi was diagnosed we were surrounded by prayer from friends, acquaintances and even people we didn’t know. The support was comforting. People did care.

But here is the point. When I wrote this last week, I saw where it began. The start of a long fall. It took more than just time to heal, it took Celebrate Recovery and other people being there for me. Once again, writing allowed me a discovery. I can look back and see it and fortify my life to not let it happen again.

Aside from discovering this leaden milestone in my life I realized something else. Or maybe I was just reminded of something. People are out there having bad days. I might see them right there in a grocery store, maybe even holding a balloon. I wonder if there is anything I could do for them. Is there anything that might make a difference?

     I don’t know what would have happened if someone had stopped me in the store and asked about the balloon and how I was feeling. It wouldn’t have re-directed the course of my life, I’m sure of that. But it would have been a little light in a dark day.

     When I wrote that, and as I reread it now, I feel moved to go to the grocery store and see what kind of light I might be able to shine. Let’s be there for each other.

How I'm making it.

     I didn’t want to be an inspiration. I wonder if sometimes that’s what people want least of all. I remember telling a friend from church that he was an inspiration to me. His young son had been hit by a car and killed. If the loss of a child is not bad enough, I couldn’t imagine the shock and horror of it happening suddenly. We went to the memorial service for the boy at our church. People were positive and told good stories of the boy. His dad got up near the end and stated how his faith in God was still there. I thought that was incredible. I hugged him on the way out of the church and thanked him. I told him he was an inspiration.

     Only about 10 years later I was at a memorial service for my own daughter who had battled cancer for three and a half years died at home in our arms. The day of the service was beautiful. I think I got it then. At least I got why the family who lost a child was cheerful the at the memorial service. I’ll go into that later. I too stood in front of the church and shared a story about Naomi and how I knew she was with her heavenly father.

     Through that whole time and for months after, I don’t know how many people came up to me and said something to the effect of “I can’t imagine what you’re going through”. Hearing it so much grew tiresome. But I understood that people meant well when they said it.

     The weeks and months that followed Naomi’s death were some of the hardest of my life. I made it through, but not intact. It was years of depression, denial and confusion before I finally sought real help. And after that it was still a long time before the sun really began to warm me again. I still have cold and dark times, but it’s different now. I know how to get out.

     The ten year mark of Naomi’s passing may have been more difficult than the 9 year mark only because of people’s tendency to count by tens. Each year that passes might be a little easier. But each December 7^th hurts. This coming February 10^th Naomi would turn 17. That day will hurt too. I often wonder what she would look like and if her hair would still be so light. Who she would be friends with and what kind of things she would like to do. She liked princesses and ballet. Would she have grown out of it and be into Star Trek instead? Would she have sung in the church choir? At every hospital, she loved the staff and everyone loved her. She was a fireball of strength and determination. She was an inspiration.  

     I made it though the 7^th of this month. I will try to make it through the rest of December. So far, no-one has told me that I am an inspiration to them. But I do get told other things. People say they pray for me.

     The day of Naomi’s memorial service I was joyous to see people there to share that with us. Most people there were sad, mourning. But I couldn’t help but be happy in the knowledge that they loved us, were thinking of us and supported us. I got it on that day.

     People say they can’t imagine what we’ve been through because they want to share the pain with us. Why would anyone want to know the feeling of losing a child other than that they love the people that are hurting enough to want to share that?

     I still have a rough time sometimes. But like I said, I know how to get out. And I don’t do it on my own. I never could. I have a support team now. I have other people who are there for me.

     So maybe knowing that someone has endured a tragedy and made it through still loving The Lord is an inspiration. Some people find it very uplifting to hear stories like that. But I just want to share what inspired me. That was people like you.

     I never would have made it these ten years with my faith in God intact without my brothers and sisters in Him. I have been prayed for, fed, looked after, rebuked, and guided. That, to me is inspiring.

     I don’t know if I’m imagining tragic stories in the news being amplified at this time of year or if I’m more sensitive to it all. But hearing bad news about bad people can ruin one’s day. I just want to say that I think that the bad guys in the world, whether or not they are a majority, cannot endure against the strength of what is good and inspiring in this world. Maybe the good doesn’t get attention because all it does is set things right where no-one notices. But there are good people in the world. They inspire me. Most likely you are one of them. Thanks for the inspiration.