Wednesday, June 26, 2013

On vintage video games and tattoos

Last week marked one year since we lost our son Aiden, and as such, I've had some time to think about, observe, and experience the mourning process. While I'm not qualified to speak as a psychiatrist or grief counselor, I will offer my opinions on what a grieving person needs. Perhaps these thoughts will help you comfort a friend during a hard time.

Grieving is like Frogger. Yes, really. You remember Frogger, right? It's the classic video game from 1981 where players control a frog and move in cardinal directions, hoping to negotiate a barrage of vehicular traffic and crocodiles. When you first start playing the game, as with any game, you're awful at it. You hop out into the road and immediately get pulverized by a truck. With some practice, however, you become more competent. After a few rounds, you can go much farther without getting clobbered. That said, Frogger is similar to most vintage video games in that there's no end. The trucks and gators just keep coming faster and faster until your poor frog ends up as either lunch or a smear on the highway.

So where's the connection to grief and loss? Well, when you first lose a loved one and the wound is still fresh, the sadness flattens you quickly and frequently. The universe seems to conspire against you, and you are constantly reminded of your pain. With practice, you get better at dodging the sorrow, going longer and longer between emotional collapses. That doesn't mean it doesn't hurt when you get run over... Getting hit by a car after dodging traffic for hours is still incredibly painful. When the grief does catch up to you, it hits you with all the force that it did on the first day. You don't ever win, you just learn to go longer and longer between losses. Sometimes you grow so weary of dodging that you just stop in the middle of the road and wait for the sadness to wash over you. Other times you don't even see it coming.

We don't want to forget. Cori and I regularly struggle with the fear that, in an effort to keep from upsetting us, our friends and family will just pretend that Aiden never existed. We worry that some have already forgotten him. One of the ways that we have both chosen to honor him, one of the ways in which we will preserve the memory of him, is through memorial tattoos. Here's the part where I take a moment to give an obligatory overview of the morality of tattoos, because at least some subset of those reading this will have gasped at the news that I am inked.

Most people who believe that tattoos are inherently immoral cite Leviticus 19:28, which says "You shall not make any cuts in your body for the dead nor make any tattoo marks on yourselves: I am the LORD." (NASV) Most people who cite this verse also deftly sidestep the verse prior (which bans certain kinds of beard grooming), and the verse before that (which outlaws medium rare steaks), and the one before that (which prohibits eating fruit from a tree until said tree is at least five years old). The bulk of the chapter is meant to offer the Israelites a set of guidelines for differentiating themselves from the pagan people that lived in close proximity. If you're willing to say that using a Norelco beard trimmer and eating a peach from a 4-year-old tree are inherently sinful, then I guess I'll have to concede that my memorial tattoo is as well. Okay, enough about that... You certainly understand my personal view at this point.

Many hours were spent anguishing over the designs of our tattoos. Cori probably showed me well over a hundred different amazing memorial pieces on Pinterest alone. Eventually Cori decided on a dove as the primary symbol in her piece, flanked by forget-me-nots and carrying a tiny heart. A portion of the dove's wing forms the letters in Aiden's name. It's quite unique and I like it a lot. Here's the finished piece:

My piece was a little longer in the making, mostly because I dragged my feet for weeks about what to get and where. Some of you know that one of my hobbies is designing ambigrams (typographic art that is readable from multiple viewing perspectives). I set about making one of Aiden's name, and eventually decided to have it inked on my left forearm:

If you stand on your head and look at the picture above, you'll notice that all the blood rushes to your head and you look ridiculous. You'll also notice that it still says "Aiden". That's what makes it an ambigram.

For Cori and I, these marks are permanent reminders that Aiden was a real person, that our love for him is real, and that the pain we feel is valid. We don't want to "get better" or "get over it". What a horrible notion it is to think that we could ever get to a point where we simply feel no grief for our late son. Our culture often views the mourning process as a temporary weakness from which you must quickly recover. The truth is that grief is empowering. It adds clarity to your priorities. It makes you look at the world differently, forcing you into an appreciation for your blessings. Grieving isn't easy, but it can be a potent force for good.

We have to find our own silver linings. Many people have tried to comfort Cori and I by pointing out the things that have gone well for us since Aiden's death. Our daughter Isabella, formerly a cancer patient, is now in remission; I'm fortunate to have a stable job that is challenging and rewarding; Our son Brady is a vibrant and healthy 3-year old with a bright future in the building demolition industry. Stuff like that.

Here's the trick. When you're grieving, a silver lining only counts if you are the one who discovers it. Attempts by others to help you realize just how good you have it invariably just end up sounding attempts at invalidating your sorrow. In the midst of your sadness, one of the most infuriating things to hear is a list of reasons why you shouldn't be sad.

We're not going to be okay, and that's okay. This wound will never fully heal. It shouldn't fully heal. Don't worry about us if we suddenly get misty three years from now when a new baby rolls by in a stroller. Don't be alarmed if we suddenly need a moment when a diaper commercial comes on. Don't freak out if we start crying over a sippy cup at a garage sale...

...We're just playing Frogger.

Monday, December 31, 2012

Lessons Learned

"Many of you will be staying up late tonight to welcome in the new year. Personally, I'll be staying up to make sure that the old one leaves."

The above is an excerpt from a year-end speech given by State Farm CEO Ed Rust Jr., after a particularly tough year for insurance a few years ago. You may remember a certain nasty storm named Katrina. Rust was himself paraphrasing the late Bill Vaughan, who was an author and columnist for the Kansas City Star. Vaughan's original quote places the two viewpoints in the minds of an optimist and a pessimist, respectively. Personally, I prefer Mr. Rust's version. Tonight I will be staying up until midnight for only one reason. I want to watch the toughest year of my life end.

Of course, the notion that an arbitrary date from the Gregorian calendar is somehow a significant milestone in my emotional timeline is complete hokum. There is no guarantee that next year won't be still tougher than this year. There is no rule or edict that demands that anyone's emotional turmoil must remain below a certain threshold within a calendar year. There is no promise that things will get better next year.

Brimming with optimism, aren't I? Hold on... I'll get there. Even though I have had to come to grips with some very difficult realities this year, those hard times have left important lessons in their wake. If I were to ignore these lessons, then all of the pain of this past year would truly be for nothing. Here are a few things that 2012 has taught me:

  • Family is critical - One of my wife's nurses told me about a young woman, a patient of hers, who had faced a situation much like ours. Her son had been diagnosed with Trisomy 18 in utero, she had carried the baby to full term, and he was stillborn just days before his due date. The nurse noted, however, that this young woman had effectively no family support. She was estranged from her parents, she had no siblings, and the baby's father was completely absent. The only person who came to visit her in the hospital was her roommate. As difficult as this year has been for us, we didn't have to do it without help. We have each other, we have a wealth of family and friends, and we have our other two children. I can hardly imagine having to face something like this alone. Hold on tightly to whatever family you have. Be there for them when they go through hard times. You might be the only thing that carries them through.

  • You are who you choose to be - I've heard it said that when things get tough, you find out what you're made of. That's baloney. Sure, you learn things about yourself in hard times, but more importantly, you make choices that will define you. When faced with tragedy or crisis, you don't just "find out" what you're made of... You decide what you're made of. You choose, right then and there, if you're going to let it destroy you or not. Life isn't what happens to you, it's how you react to what happens to you. Cori and I certainly discovered some tendencies in each other through this, but far more important were the things we demanded of ourselves. We refused to give up on Aiden, we were adamant about protecting Isabella and Brady from as much of the pain as possible, and we vowed to cling to each other through the entire ordeal. You are not just a set of immutable personality traits waiting to be unveiled. You are an infinite array of possibilities, and you get to choose which ones will represent you in this world.

  • Any port in a storm - Few people seek out sadness. Most everyone in this world would prefer to be happy. I would prefer that my restless nights be the result of a fussy infant, rather than that of the unshakable memory of holding my son's lifeless body in my arms. But there is still happiness to be had. I find comfort in knowing that Aiden's story inspired people all over the world. I am encouraged by the idea that he drove people to pray, even some who would normally refuse to do so. There is joy to be had in seeing my other two children open Christmas presents, even if that joy is somewhat clouded. When things are dark and desperate, find something good... anything that can even be loosely interpreted as positive... and hang on for dear life. Don't let the sadness become all you have.

  • Prayer works - I bet you didn't expect to hear that one, huh? Even with thousands of people praying all over the world, our baby boy still ended up buried in the cold ground of Minier Cemetery, and here I'm saying that prayer works? Well, I should clarify. Prayer, at least so far as I understand it, isn't a quantifiable currency with which we purchase favors from an omnipotent vending machine. There's no giant fundraising thermometer display in the sky indicating "progress to goal". More remarkable prayer requests don't cost more prayers. Too often we think of prayer only as a way for us to beg, plead, or demand things from God. That's simply not what it's about. Prayer is our half of a conversation, and we can initiate it any time we want. I can't call up my senator on a Monday afternoon just to check in. I can't video chat with the president and ask for his advice (let's pretend for a moment that I'd want his advice). I can't request an audience with Queen Elizabeth II and expect to get one. I can, however, speak with the creator of the universe any time, day or night. I can seek guidance, I can offer up my concerns, I can scream and cry and rage over my misfortunes. I may not always get an answer that I can understand, and I clearly won't always get the answer that I want, but being allowed to speak to God is its own reward. As such, prayer works, but not in the way we often suppose or hope it will.

It's been a long year. I hope next year is better, but if it isn't, I've already decided how I will respond. I will hug my kids, kiss my wife, and weather the storm. I will continue to do my best to keep my chin up and my head bowed simultaneously (which is quite difficult, by the way). I will keep praying, I will keep clinging to the good things in my life, and I will keep finding ways to learn whatever lessons I can. Happy New Year, everyone.

Friday, December 7, 2012

Learning to be thankful

Just over five months ago, we buried our son Aiden. This has been the most painful year of our lives, and the holidays are shaping up to be excruciating. It's perhaps understandably difficult for us to be as festive as normal this year, but we're trying.

My youngest brother and his wife graciously hosted Thanksgiving this year, and while it was good to spend time with the family and eat five metric tons of turkey, Cori and I had to fight off a constant sense of melancholy all week. You see, even the good days feel somehow empty now.  Even the happiest moments are tinted with just a shade of sadness. Trick-or-treating, Thanksgiving dinner, Christmas shopping, all of these things would be different with a healthy baby in the house.  They would be busier, more stressful... they would be better.

That said, I am being purposeful about being thankful for the good things in my life, and I feel as though I should take a moment to list some of them.  In spite of the rough year, I'm thankful for:
  • My wife Cori - She continues to impress me with her strength.  If asked, she would quickly name me as "the strong one" because of my typically stoic nature in the face of tragedy.  She would be quite wrong.  Her burden in this was uniquely painful, both emotionally and physically, and the fact that she still manages to drag herself out of bed in the morning to care for our other two children is truly remarkable.
  • My daughter Isabella - She's clever, curious, empathetic, and infinitely forgiving.  She makes me smile every single day.  She took on cancer and won, and she continues to inspire me with her bravery.
  • My son Brady - He may burn my house to the ground before he enters Kindergarten, but I love him anyway.  He's relentless, tenacious, and jovial.  His mischievous grin will probably make him a movie star some day, but for now, he's my favorite little wrecking ball.
  • My new job - As we closed in on Aiden's due date, my previous employer fell on some hard times.  Things started to get very tight, and the stress level was ratcheted up.  I made the very tough decision to leave for another job, and the new gig has been very rewarding.
  • My family - They have their quirks (as does every family), but when there is a crisis, my family shows up and offers their support.  My father describes my family this way: "We may not be very useful, but we'll be there, and we'll be eating."  Having my family show up from all over the country helped greatly in the days after Aiden's death.
  • My wife's family - Yes, really.  My in-laws are all great.  They have been very supportive through all of this.  Having family that lives nearby is a big deal.
  • My son Aiden - Here's the difficult one to articulate.  I'm thankful for Aiden... not for his Trisomy or his passing, of course... But for him.  I'm thankful for what he taught me, for what this experience continues to teach me, and for what I hope it will teach me in the future.  I'm thankful for the overpowering love I feel for him, even though I never got to properly meet him.  I'm thankful for the prayers that flooded in on his behalf, even though they weren't answered in the way that I had hoped.  I'm thankful that Aiden's story caused so many people to pray.  I'm thankful that it continues to do so.
Being thankful is really not going to come naturally this year.  It would be far easier to turtle up, shut down, fold in on myself and lock out the world.  Being sullen and miserable for the rest of this year (and maybe for several years thereafter) would be forgivable.  Being constantly sad would be effortless right now.

Here's the thing... I don't want to be that way.  I want to be happy.  I want to give Bella and Brady a magical and meaningful Christmas.  I want to sing carols, drink mulled cider, eat ham, open presents, bundle up, light a fire, and be thankful for what this holiday means.  And so, I will.

But it won't be easy.

Monday, June 25, 2012

Dear Aiden

You never got to meet me, but I'm your dad. I've been a fan of yours for some time now. When your mom told me you were on the way, I swear I smiled for a week straight. I put your due date on my calendar and looked at it almost every day. When we first got to hear your heart beat, mine stopped for a moment. When they showed me a picture of you, when I saw your impossibly small hands and feet, I started to imagine all the amazing things you would do someday. Maybe those hands would play the piano, or paint a masterpiece, or write the next great American novel. Maybe those feet would run a marathon, or kick the winning goal, or carry you to the top of a mountain.

Then the doctors told us that something was wrong. They said your hands were crooked and your feet were pointing the wrong direction. They said you were sick, flawed, broken in the worst way. They told us you might not live to see your own birth. They told us to prepare for the worst. They also told us you were a girl... Sorry about that one, by the way. They told us it was okay to cry, and so we did... We cried a lot.

Then the strangest thing happened. We told our friends and family about you and asked them to pray, and they told their friends, who told their friends, and so on, until people all over the world were praying for you. They began praying in Canada, England, Australia, New Zealand, The Netherlands, Germany, Singapore, and Bulgaria. They wrote words of encouragement from Spain, France, Brazil, Israel, India, Portugal, Italy, China, and Greece. They cried out to God on your behalf from Ireland, Mexico, The Philippines, Russia, and every state in the United States. Some of them had prayed hundreds or thousands of times before, while others found themselves speaking with God for the first time in their lives. Your story drove thousands of people to their knees.

A few days ago they told us that you had died. They told us that your broken little body just couldn't take any more, and that you were gone. Your mother and I were heartbroken, frustrated, and angry. What good is a worldwide army of prayer warriors if their efforts can't save one tiny child? What good is an omnipotent God if he won't use just a fraction of that power to heal you? Again, we cried an awful lot.

Hundreds and thousands of messages poured in, well-meaning condolences and sympathies from every corner of the world. Most didn't do much to cheer us up, but one made me stop and think. It came from a woman I have never met, a woman who lives thousands of miles away. She wrote, "Aiden has done more for the kingdom of heaven before being born than most people will do in their entire lives." It took me several minutes to really wrap my head around it, but I think she's right. You changed hundreds of lives without even getting a chance to live your own. You touched people on every continent before I ever got to touch you at all. You inspired, encouraged, and evangelized, all without ever making a sound.

You are loved, my son. I loved you from the first moment I knew you were coming, and I will love you until the day that I die. I may never really understand why this happened, but I'm beginning to think that maybe your entire purpose on this earth was to bring people closer to God, and that you did it so well that you were called home early. I like to think that maybe God saw how amazing you were and just wasn't willing to share you any more. I miss you terribly, but I like to think that I'll see you again someday. When I do, I hope that I will have done half as much good in my life as you did before yours began.

I love you,

Saturday, June 23, 2012


Well, we're back at the house, but it feels all wrong. Cori went to the hospital carrying a baby, and we were supposed to come home with a baby in a carrier. We were supposed to be up at all hours changing his diapers. We were supposed to be feeding him almost constantly. We were supposed to be doing rock/paper/scissors to determine which one of us had to get up and rock him back to sleep. Make no mistake about it, we got our sleepless nights... It's just the reasons that are all wrong.

You may be familiar with the old Chinese proverb that says, "Even a small stone creates big ripples, but the water must be still lest they go unnoticed."... At least I think it's a Chinese proverb. Maybe it's Indian. Actually, now that I think about it, I'm only mostly sure that I didn't make it up just now. You should probably Google it. Anyway, let's pretend for a moment that it's definitely an old Chinese proverb, because most of what I say next won't make any sense otherwise.

Back in February I mentioned that previously negligible events had suddenly acquired the ability to provoke a substantial emotional response. That's more true now than ever before. Cori and I both struggle with frequent flash floods of frenzied feelings. We're surrounded by tiny reminders of our son, small stones that keep dropping into the water and making huge, excruciating ripples.

Cori has a fancy-schmancy Android tablet, and had placed a little countdown widget on the desktop that shows the number of days left until her due date. Yesterday she fired up the tablet to check her e-mails and was greeted by a brightly colored icon gleefully announcing that there were zero days left. She cried so hard that she couldn't even muster the strength needed to drag the widget to the trash can.

As we left the hospital yesterday morning, Cori being pushed in a wheelchair and me plodding along carrying the luggage, we passed a young expectant couple being given a tour of the labor and delivery area. Their eyes glimmered with hope for the future, for the promise of a perfect angel baby. It took an embarrassing amount of willpower for me to keep myself from shouting them into a corner and interrogating them on why they would dare to believe that they deserve a healthy child.

Over the last few weeks, Cori had been keeping kick count logs at the request of her nurses. Every night, she would sit and count how many times Aiden punched or kicked her in a certain number of minutes. Sitting in our living room last night, she found her kick count papers on the side table and broke down sobbing.

Should a computer icon, a happy couple and a sheet of paper covered with tick marks on it be so emotionally devastating? Of course not, but they are. They are also just the first few examples that came to mind. The last days have felt like a carefully organized effort by the entirety of the universe to sap us of what little strength we have left.

That said, there are other ripples... Better ones. Surprising acts of kindness from friends, family members, and complete strangers that bolster our resolve and lift our spirits.

I stopped by a local gas station yesterday afternoon to pick up sandwiches for lunch. One of the joys of living in a small town is that the convenience stores often double as the eateries, and this particular one has a nice little sandwich shop inside. The staff there is truly wonderful, and I'm often happy to pay a few cents extra per gallon to just to stop by and share a laugh. Yesterday, as I walked in, I was nearly tackle-hugged by the women who work there as they offered their tearful sympathies. It seems that another feature of a small town is that news travels quickly. After hurrying to prepare my sandwiches, they refused to let me pay for them.

In the last few hours, a parade of friends from our church have come by to drop off food and share in a good cry. We are certainly going to be the most well fed grieving couple around, that's for sure. It seems that while words often fail people in situations like this, a good chicken casserole never does.

Phone calls and emails have poured in from all over the world offering kind words and condolences. This blog, this humble, cathartic experiment of mine, has been viewed by over 90,000 people since Wednesday morning, and it seems that roughly half that many have written to me on Facebook, sent me an email, or called. I have been greatly encouraged by all of you.

My father, who arrived yesterday with my mother after a long drive from Ohio, was clearly impressed by the outpouring from the community. He said, "I guess in a small town, when someone's barn blows over, everyone just rallies and helps put up another one." I think he's right.

Do these good ripples outweigh the bad? Perhaps not, but I'm certainly glad to have them. I think the water is going to be choppy anyway. We're heartbroken, and that's not likely to change soon, but we also have much to be thankful for.

Thursday, June 21, 2012

Let's be honest... This sucks

It's just after six o'clock in the morning, and I'm sitting in the hospital waiting room watching Bugs Bunny cartoons on television and milking my second Mr Pibb in the last two hours. Cori was out like a light when I stumbled out of her room, unable to sleep. Yesterday continues to haunt me. I imagine it will continue to do so for a very long time.

I would be remiss if I didn't start by saying how grateful I am that the cesarean section went well and Cori is recovering quickly. This surgery, while somewhat commonplace, is still a big deal, and I'm not sure that my fragile emotional state could have survived any complications. There are more than a few cracks in this facade already.

Yesterday in the operating room, after successfully getting Aiden out (I suppose "success" has to be given a somewhat forgiving definition at this point), the nurses brought him over for us to see. We both wept as I took the lifeless body of my son in my arms and instinctively began to gently rock him.

I wanted so badly for him to cry. I wanted him to fuss and fidget and refuse to calm down. I desperately wanted him to be frustrated by those first few moments trying to nurse, to be loud and unreasonable like a baby should be. I cycled through emotions at a blinding pace. I was sad, furious, hysterical, depressed, relieved, and indignant, all seemingly at the same time. I wanted to scream at the nurses and beg that they do something to fix him. I wanted to scream at Aiden and try to wake him up. I wanted to scream at the sky and demand an explanation, a reason, some feeble attempt to address the impossible question of "Why".  I wanted a do-over, a recount, a mulligan, an undo button.

But I don't have an undo button. I may never get an explanation.  He's not going to cry. Instead, we cried. We sobbed and cradled his tiny broken body. His cleft palette, which we knew about from the ultrasounds, was jarring to see. His impossibly tiny hands and feet, all misshapen and turned the wrong way, were unnerving. I found him painful to look at, and for that I felt guilty.

Several months ago, shortly after having been told about Aiden's Trisomy, Cori and I were in the kitchen doing dishes. We had let them get a little out of hand, so there were a lot of them to wash. After tackling the third sink-full and still having a noteworthy amount left, Cori paused and said, "This sucks."  I agreed, then noticed a tear running down her cheek and realized that she hadn't been talking about the dishes at all.  I've waxed poetic on this blog about what I've felt, what we've struggled with, etcetera, but I think that perhaps no description of this situation is more accurate than the one Cori gave that day... This sucks.

Wednesday, June 20, 2012

It's the end, and it's not okay

In a trailer for the new film The Best Exotic Marigold Hotel, one of the characters (played by Dev Patel of Slumdog Millionaire) delivers the line, "Everything will be alright in the end... So if it is not alright, it is not yet the end." I really like the sentiment, but today I'm not sure I agree.
This morning Cori went in for her normal oil change and tire rotation at the doctor's office. After the nurse wasn't able to find a heartbeat with the normal monitor, they checked using a sonogram, which confirmed that our son, Aiden Maxwell May, had died.
My words, the tools with which I am so comfortable normally, fail me today. We prayed for a miracle, as did thousands of you all over the world. It would seem that we didn't get our miracle, at least not the one we wanted. Please continue to pray for my wife, as she now has to face the truly unsavory task of going through a delivery without any hope of ever hearing the baby cry or getting to see him smile.
Thank you again for your prayers. Today is a rough day.  We've reached the end, and everything is very much not okay.