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.

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.

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,
Dad

Ripples

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.

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.

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.

Empty

I can see the empty space in the parking lot from my desk.  Normally there would be an obnoxiously large black Ford truck barely crammed into the spot.  Normally there would be a child's car seat visible through the windshield.  Normally a gigantic man with a granite chin, impossibly broad shoulders and a huge barrel chest would sit in an office not two hundred feet from where I sit now.  His hands, those comically over-sized paws, gnarled from years of swinging a hammer as a general contractor, would click away at the comparatively minuscule keyboard as he worked tirelessly to prepare a quote for a customer or follow up with a sales lead.  Normally he would greet me with a wide grin and a booming hello in his huge baritone voice.  At the end of the day he would stand, stretch, sigh, smile, and plod off to that metal monstrosity in the parking lot.  He'd hop in, crank up whatever song was playing on the local Contemporary Christian radio station, and drive home to see his wife, children, and grandchildren.  Normally his two-year-old grandson Nathan would fly into his arms and squeeze him with every ounce of his toddler strength.


None of those things will happen today.


Late this morning, Ken Smith died in a hospital in Bloomington, Illinois.  He was fifty-five years old.


Thank you all for your prayers these last few days, and please continue to pray for Ken's family.  His wife Linda and daughters Rachel and Talea need those prayers now more than ever.

Normally, if I were having a particularly bad day, I would go talk to Ken and he would inevitably recall a passage from the Bible that had encouraged him recently. We'd chat for a few minutes and I would leave feeling optimistic.


I guess that won't happen today either.

An Emergency Request

Since launching this blog and watching its readership grow, I have hoped that its global reach might someday be used for some purpose beyond just baby news.  Half an hour ago I received an e-mail that convinced me that today is that day.

Most of you do not know Ken Smith.  Most of you are missing out.  Ken, who was my direct supervisor for nearly three years at my current job, is a man of prayer unlike any I have ever known.

Last night Ken collapsed and was rushed to a local hospital.  The doctors found that he has severe internal bleeding, but could not determine the source.  His condition worsened overnight and he is currently in the process of being airlifted to another hospital in an attempt to save his life.  I have very little other information, I just know that his situation is very grim.

I am forever grateful for the thousands that have been praying for me, Cori, and our son Aiden these last few months.  I now ask that you turn your thoughts and prayers to Ken Smith and his family.  I will post again when I know more.

The storm before the storm

It's been a while since my last post, and I think perhaps an explanation is in order. In the weeks after Aiden's diagnosis, there was a truly blinding flurry of activity. We met with doctors, talked to specialists, read articles, shed tears, and watched in awe as a massive global prayer network rose up to support us. It was dizzying how fast everything moved in those first few weeks, and by the time I posted the video of the bear, I was perhaps as emotionally exhausted as I ever have been in my life.


Then a remarkable thing happened. We ran out of things to panic about for a while. Somehow we had reached a surreal plateau where we were past the initial shock of the news, but not yet close to the delivery day. It was a welcome lull in the middle of an otherwise frenzied time. Cori and I took advantage of the ability to pretend, if only for a moment, that we were expecting a normal healthy baby. There were still plenty of hard days and plenty of tearful prayers, but for the most part we allowed ourselves to just be still and calm.


The calm came to a decidedly abrupt end today. This morning we dropped off our kids at a family member's house and headed to the hospital for a full four hours of meetings with doctors, nursing staff, geneticists, counselors, family advocates, therapists, the works. We talked about our "plan", going through pages of possible scenarios we might face and specifying the way we would want each to be handled. We had to speak the phrases "if he doesn't respond to resuscitation" and "last few moments of life" several times. The roller coaster has fired back up, and it's shaping up to be a heck of ride this time.

You may remember me mentioning that our due date is in late June. We've known for some time that Trisomy 18 children often arrive early, but it's now clear that Aiden is probably going to be a May baby in two senses of the word (See, it's funny because our last name is May, and our son is probably going to be born in the month of... oh never mind). Anyway, we're actively prepping for landing at this point, and any sense of calm we may have enjoyed in the last few weeks is very much gone. Cori has a zero-second-notice hospital bag packed, we've established contingency plans for our two-year-old and four-year-old, and we've set up the family phone chain that will go live when we head for the hospital.


The calm before the storm before the storm is over. We've moved into the storm before the storm. As always, your prayers are greatly appreciated.

The best teddy bear ever

My writing has been pretty long-winded and something of a bummer as of late, though I suspect you'll forgive me for that. Even so, I think maybe it's time for a nice short post with a little more... cheer. You'll like this.

On the truly excellent recommendation of Cori's midwife, we went to the nearest Build-A-Bear™, picked up one of their little recording devices, and brought it to a recent appointment so we could capture Aiden's heartbeat. One more quick trip to the ursine customization facility and we were the proud owners of this little guy:

He's pretty much my favorite stuffed animal of all time.

Tough decisions and tougher odds

A few weeks ago, Cori and I sat down and had a tough conversation. You're likely thinking that difficult talks must be somewhat commonplace for us right now, and of course you're right. This particular chat, however, was more important than most. You see, we knew that at some point one of our well-meaning friends or family members would suggest to us that we should get an abortion, and we needed to be prepared with an answer.


They wouldn't use those words, of course. They'd be far more politically correct. Instead of "abortion" they would say "terminating the pregnancy" or maybe "releasing the fetus from the womb", and it would be put forth as the kinder, less selfish course of action. I suspect my tone has already revealed my thoughts on the topic, but I'll continue anyway, primarily because this would be a weird moment to abruptly stop writing.


In short, we decided that we are completely unwilling to entertain an abortion, and only a very clear and very severe risk of Cori dying would ever cause us to even revisit the issue. We will not rob our son of whatever small chance he has at life, no matter how short a life that ends up being. We are not giving up on Aiden. Not now, not ever.


Unfortunately, we can only speak for ourselves. I've recently started to get a tangible defeatist vibe from some of the people around us, most specifically the medical professionals. Toward the end of our most recent appointment, our doctor finished a sentence with, "...Oh, and let's not bother with the gestational diabetes test. There's no sense putting you through that."


For those that don't know, the test for gestational diabetes is pretty much standard procedure for expecting mothers any more. They draw blood, then make the poor woman drink some gross sugary slime (Cori said it tasted like Tang and snot), have her sit and read the decade-old copies of Redbook in the waiting room for a few hours, then draw blood again. By comparing the "before" and "after" blood samples, they can tell if her body is properly processing the sugar. If not, she'll be put on a diet and exercise program to compensate. Side note: I don't ever want a job that requires me to tell pregnant women that they need to start dieting.


Now initially my reaction to the doctor saying that Cori could skip the test was, "Oh, good. She was dreading the thought of having to choke down that nasty stuff again." Later, however, I started to get uneasy about the whole thing. Why did he say there was "no sense" in doing the test? Gestational diabetes, when present, notably increases the risk of a stillbirth. Isnt that something we would rather avoid, or is there "no sense" in putting Cori through the test because the doctor figures Aiden is already as good as dead?


There have been a few other recent examples as well... Times where a doctor or nurse has said, "Now normally we'd test for this or be careful of that or keep in mind that other thing", quickly followed by, "...but I think maybe we won't worry about it right now." Don't get me wrong... I'm a big fan of not worrying. Cori will attest to the fact that I take great pride in my ability to suppress and ignore things that might otherwise upset me. That said, anything that endangers my children gets a special exemption from my normally calm facade. I worry about my kids, and even though he won't be born for another several months, Aiden is still my son.


All of this talk is of course wildly unfair to the doctors and nurses. They're in an impossible position. They have to make recommendations based on what they know to be probable, and all of their training and experience tells them that it's simply foolish to expect anything but an extremely short and extremely painful life for our baby boy. They're not really giving up, they're just playing the odds, and I shouldn't blame them for doing so. They've seen this before, and they know how it always ends.


As we move forward, we're going to have to face more tough choices, and I expect that we'll continue to hear whispers of futility in the words of our advisers. We'll try not to take it too personally. Instead, we'll make decisions with our son's best interests in mind, decisions that will give him the best chance at life, decisions that will give us the best chance to hold him. Aiden's story is likely a tragedy, but our part to play is one of only love.

Bittersweet compliments

On the day that our doctor first told us about Aiden's Trisomy 18, he also asked me an odd question just before leaving the room. He wanted to know what I do for a living. I was mostly in shock and thought very little about the question at that time, but later became very curious as to why he would want to know.

Being the kind of person who can't just let things go, I asked him about it the next time we spoke. He said that he had never seen anyone respond so calmly to such devastating news, and he had figured that I worked in some high-stress job like law enforcement or active military duty. Now in case any of you are curious, I don't have a particularly high stress job... I'm a software developer. The most stressful thing I do on a typical day is fret over the fact that I'm still terrible at regular expressions. It's pretty safe to say that my job has very little to do with the way that I react to crisis.

At our most recent visit, the doctor delivered perhaps the most bittersweet compliment Cori or I have ever received. He said, "The two of you are handling this better than any couple I've ever seen, and I've sadly seen quite a lot of couples go through this."


What a strange feeling, sitting here watching the Oscars, having apparently been nominated "best couple in a tragic scene" ourselves. How I wish all of this were just a bad movie that I could pause, or better still, stop and eject. Sadly I don't have that power. I can't help Aiden as he fights to make it to his birth. I can't fix Trisomy 18... Nobody can. I can't stop this movie, I can't rewrite the ending, and I can't watch a different one instead. The only thing I actually control here is my response.


I've learned a lot about myself in the last month and a half, but I've learned far more about Cori. She would have you believe that I'm the strong one, but she carries a unique and painful burden in all of this that I can't possibly fully understand. She feels Aiden kick and remembers all the joy and hope for the future that used to accompany that sensation, then she has to try to reconcile those feelings with the overpowering heartache of knowing that we will probably bury our baby boy this year. I'm not the strong one, I assure you. Cori is, and whatever small strength I have is borrowed from her.


I gotta say, I don't like this movie very much, but I'm glad that I'm not watching it alone.

More than I can handle

Again, I'm compelled to begin by saying thank you for your prayers.  We have again been flooded with words of comfort from all over the world. Oh, and West Virginia has reported in several times, so for those keeping score at home, we're 50/50 on US states and we may have to get more granular. Let's see, there are 3,143 counties in the United States, so...


Back to the aforementioned words of comfort. One particular sentiment has made its way to my inbox over a hundred times, and while I don't want to be combative, I think perhaps a correction is in order. Here's what quite a lot of you have said:


"God will not give you more than what you can handle."


The above is a common way of paraphrasing 1 Corinthians 10:13, which actually reads as follows: "No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it."


One thing that Christians (myself included) are occasionally guilty of is failing to read the context of a verse, then choosing to misinterpret said verse in a way that we prefer.  I suspect that many times we don't even know we're doing it... we're just overly anxious to find some biblical evidence to support a genuinely well-intended thought. If you were to read the twelve verses before 1 Corinthians 10:13, you'd realize quickly that the entire passage is a series of warnings about the penalties of sin, culminating with verse 13, where Paul caps off the warnings by basically saying (and now I'm the one who's paraphrasing), "...And don't go saying that you had to sin due to some unbearable temptation. Your temptations are nothing new. Plus, God won't ever let you be put in a situation where your only option is to sin."


Now don't get me wrong... I appreciate the sentiment. I like the idea of not ever having to face more pain/suffering/sorrow/etc than I can tolerate. The problem is that I'm quite certain that I'm already over my limit. This is already too much. Maybe that's one of the lessons I'm supposed to be learning in all of this. Perhaps the point is to realize that I truly can't handle this... without God.


Actually, that sounds pretty good, and it lines up way better with my recent experiences. Instead of "God will not give you more than what you can handle", let's say "God will never leave you, even when the world has given you more than you can handle". I bet I can even find a verse to support that thought.

Pain Point: Talking to Bella

The day after being given the Trisomy 18 news, we sat down with our daughter Isabella to talk to her about what was happening. She had spent the previous day surrounded by crying adults, and we didn't want her to be too scared by the whole thing. I had already called most of our immediate family members and looped them in one by one, but none of those difficult conversations could hold a candle to the task of trying to explain it all to Bella. I was misty through the whole thing, but here's what I tried to convey.

• Mommy and Daddy have been really sad since yesterday, but it's not because of you. You make us very happy.
• We're sad because the baby in Mommy's tummy is very sick.
• It's a different kind of sick than your cancer was. The doctors probably won't be able to make it better like they did when you were sick.
• The baby might be too sick to ever come home with us.
• We love you very much, and we want you to know that we're not sad because of you. We're just very worried about the baby.

I know. Trust me, it's even harder to say than it is to read. Bella, brave little munchkin that she is, gave me a big hug and seemed to understand most of what I had said.

Well, after yesterday's gender bender, we felt we needed to take a minute and talk with Bella again. She had grown accustomed to hearing us refer to the baby as Sophia, so tonight at bath time I told her the baby's new name. Again, she seemed to understand, but had some questions this time.

Bella: Daddy, is Aiden sick just like Sophia was sick?

Me: Yes. He's very sick, honey.

Bella: Why are the babies so sick?

Me: I... I don't know, kiddo.

Okay, so maybe she didn't quite understand after all. That's okay. Still, even without fully grasping what I was trying to say, she managed to cut right through the chatter and ask the question that I've been intentionally avoiding... Why?

I've tried not to ask why... I know I don't have the answer. I didn't have the answer tonight when Bella asked. I didn't have the answer last month when the doctor said, "there's something very wrong with this baby". I won't have the answer if we get to delivery day and have to watch our son struggle for his life.

Maybe I'll get an answer someday. If I do, I'll be sure to tell Bella. For now, though, I hope she'll forgive me if I just keep avoiding the question.

Well this is embarrassing

"You need to learn to keep your mouth shut."


Cori forced a smile and choked the words out through her tears. She was right, of course. Less than an hour earlier, on the way to the hospital, I had tried to calm her nerves by saying, "They've already given us the worst news possible... They can't possibly give us any surprise bad news at this point."


I really need to learn to keep my mouth shut.


There isn't really a good way to ease into this, so I guess I'll just come out and say it. Sophia is a boy. Yes, really. Now if you're like me, you're wondering how this could happen. You see, it turns out that when an ultrasound technician says "It's a girl", what she really means is "My current viewing angle does not allow me to observe any working boy parts". It's a subtle difference, I know.


So why is this bad news? Well, first, the measurable stuff. Boys with Trisomy 18 live half as long as girls, statistically speaking. One of the few "bright sides" we had been clinging to was the fact our child was a girl, and therefore had twice the life expectancy of a boy with a similar diagnosis. In a sense, our unborn child's life has just been cut in half, which is a major bummer.


Now for the less quantitative stuff. Cori and I have already fallen hopelessly in love with a little girl named Sophia Grace. We have already fired up a prayer chain that has inexplicably wrapped around the entire planet, and hundreds of people have expressed their gratitude for being able to pray for Sophia by name. If you're viewing this post on the old blog, you'll notice that the URL of the blog was selected based on that name. The two of us (and many of you) have become emotionally attached to our daughter, and now it sorta feels like she has died and we've been told that we're expecting a son... who has Trisomy 18.


I know that all seems very dramatic, but I'm working on being more honest and vulnerable, remember?  Anyway, Cori and I have spent the last several hours trying to come up with a new name, and after much discussion, we've settled on Aiden Maxwell May. And just like that, the little girl you've all been praying for is actually a boy. I suspect that God knew he was a boy all along. As always, those prayers are greatly appreciated, and with Aiden's life expectancy now being roughly half of what we had previously hoped for, those prayers are also greatly needed.

The long road ahead

Cori and I continue to be amazed by the deluge of support we've received from all of you. In the few days after my last message, well over a hundred responses poured in, most of which contained statements like, "Wyoming is praying", "Kansas reporting for prayer duty", or "Please add Florida, North Carolina, Washington DC, Wales, England, Scotland, and Japan to your list". Perhaps it's silly to get hung up on numbers, but I've found a great deal of comfort in knowing that our prayer support is so widespread. In case you're curious, I now know of people praying for Sophia in 49 of 50 states (It seems I have no contacts in West Virginia that I know of), and 32 foreign countries.


While the scope of our prayer support is staggering, it's still been a very hard few weeks, and if our doctors are to be believed, the hardest weeks are yet to come. Many of you have told me how impressed you are with how we're handling this situation, using terms like "strong" and "brave". While I certainly hope to be both of those things, it's important to remember that the verbiage of my e-mails is carefully chosen, and isn't an accurate representation of what I'm actually feeling most of the time. I think that maybe a more candid account is in order. I'm going to tell you what I really feel, and I hope that in some way it will help each of you to know how to pray. Here we go.


Previously negligible events have acquired the ability to provoke a substantial emotional response as of late. I'm pretty sure I never used to cry over diaper commercials. Overhearing a stranger planning a baby shower didn't make my heart sink three weeks ago. Cori and I had talked on several occasions about which room might become the nursery, but those talks had never left me dejected before. It's remarkable how many innocuous things have become caustic in the last few weeks.


I struggle daily with "Is is worth it to..." questions. Our son wears cloth diapers, and we had planned on buying more for Sophia. Is it worth it to spend money on the diapers if we may never get to use them? Cori goes to a large local children's clothing sale twice a year. Is it worth it to buy infant clothes when we're being told that Sophia probably won't live long enough to wear them? We had worked out a rough plan for the nursery just a few days before the Trisomy 18 diagnosis. Is it worth it to decorate our daughter's room when we know that she may never get to come home and see it? Never mind the money or the effort of any of these things... Is is worth the possible emotional pain of coming home to an adorable nursery full of diapers and clothes, but without Sophia?


Additionally, how do my answers to those questions reflect on my faith? I say that I believe God can do anything, even heal my broken little girl. That said, I've looked at hundreds of memorial pages on the internet created by parents of Trisomy 18 children. Most of them prayed for a miracle too, and all of their babies are gone. If I say it isn't worth it to decorate the nursery or buy new diapers, does that mean that I don't really believe that God will heal Sophia? Does it mean that I don't really believe that he can? Is God's willingness to intervene impacted by my faith, or my lack thereof?


Some of you may know that our daughter Isabella is a former cancer patient. Many of you prayed for her when she was diagnosed with sarcoma just one day after Brady was born. After the cancer diagnosis, Bella's doctors laid out a very clear plan for her recovery. "We're going to do this surgery here, and if it doesn't work, we'll try that procedure over there, then this, then that, etc, until we either win or we lose." Sophia's diagnosis is wildly different. The plan is just, "We lose". That's hard for me to wrap my head around... It's confusing and surreal to have a tragedy put on my calendar for me. It sometimes feels a little like I've managed to get on the wrong subway car. The next stop is somewhere I don't want to be, but I can't make the car go anywhere else and I can't make it slow down.


Cori and I know that the road ahead is very long and likely very painful. For our daughter Sophia, we fear that the road may not be long enough. Your prayers (and those of the thousands of others who continue to pray all around the world) are greatly appreciated. Thank you.

Praying for something unreasonable

First of all, thank you.  I cannot possibly express how comforting your kind words have been to us this week.  The past seven days have unquestionably been the most difficult of our lives, and if medical professionals are to be believed, there are plenty of decidedly more difficult days yet to come.  Without your overwhelming outpouring of support and prayer, these hard days would have been truly unbearable.  Our doctor called us today and told us that the recent amniocentesis results have confirmed our fears.  Our child has Trisomy 18.


One week ago, after being told that our daughter Sophia will have to fight tooth and nail just to make it to her own birth, I sent out an urgent prayer request to just over eighty people in my e-mail address book.  In the few days that followed, I got back exactly two hundred and fifty-eight e-mails from friends, friends of friends, and friends of friends of friends, all with words of encouragement and the promise of prayer.  It might seem a little silly to share these totals as though they're box scores, but I'm a numbers guy and I can't help myself... Bear with me.  Right now, this is what our prayer support looks like on paper (and this is just what I know about):

• Roughly 4,200 people...
• 39 churches
• 52 prayer groups
• 14 Sunday schools
• 77 families
• 103 individuals
• in 34 states...
• Illinois, Ohio, Indiana, Kentucky, Tennessee, California, North Carolina, Georgia, Nevada, Montana, Arizona, Pennsylvania, New York, New Jersey, New Hampshire, New Mexico, Louisiana, Mississippi, Missouri, Delaware, Maryland, Maine, Colorado, Hawaii, Washington, Oregon, Idaho, Utah, North Dakota, Minnesota, Wisconsin, Connecticut, South Carolina, and Virginia
• and in 7 foreign countries:
• Mexico, France, Ireland, Israel, India, Brazil, and Canada (Canada counts as a country, right?)

To say that I'm humbled would be something of an understatement, but perhaps still more comforting than the sheer volume of prayer support is the content of the messages that I've received.  A few noteworthy quotes:

• "When your hands are tied, they're nearly folded.  This is not a coincidence."
• "If prayer is all you have left, you're in a great spot."
• "I believe that miracles still do happen, and I will be praying for full healing."

That last one came up more than a few times, and it's worth expanding on.  In my previous e-mail I wrote, "...I fear it may be too late to pray for a healthy baby."  After getting over twenty responses flatly refusing to pray for anything short of a completely healthy child, I began to regret my words.  Why shouldn't I pray for something unreasonable?  Why not beg for the impossible?  If all I'm going to pray for is a sense of resolve and a little luck, why do I need four thousand people to pray along with me?  I've changed the way I'm praying.  Full healing for Sophia is a wildly unreasonable request, and as such, that's what I'll be praying for every day from now on.


There was one other recurring statement that struck me.  I got six different e-mails with almost the same message: "B.J., you know me, and you know I don't believe in God.  I don't pray and I never have, but for you, I'm going to start." 


Now if I were asked to choose between the life of my unborn daughter and the eternal soul of a friend, I have to admit I'd probably choose my child.  That said, it's remarkable to think that only one week into what I hope will be the most painful experience of my life, people who would never have spoken with God otherwise have begun to do so.  It's comforting to know that some small good may have already come of this.  It's amazing to even consider the idea that a broken baby could maybe, just maybe, help fix someone's relationship with God.


If you're one of those six people and are feeling really uncomfortable right now, don't worry.  I'm not going to call you out by name, and I'm not going to get preachy with you the next time we talk.  Should I see you or speak with you on the phone any time soon, I'll have only one thing to say:  Thank you.  Thank you for praying, even if you're lousy at it or out of practice.  It means the world to us.


Finally, to all of you... From the seasoned prayer warriors to the six gracious rookies; From Hawaii to Maine and from Brazil to India:  Thank you, and if you would, pray for something unreasonable.

A prayer request from B.J. and Cori May

Hello friends,


I truly wish that I had the time and emotional strength to call each of you and tell you about the events of today, but I'm fortunate enough to have far too many friends and family members for that to be practical.  I'm also notoriously bad about keeping in touch, so I'm going to compensate by filling you in on some back story.  My apologies to those that will have to skip ahead to get to the new information.  I also apologize in advance if I seem in any way flippant or irreverent as I relay the details... my feeble sense of humor is one of my defense mechanisms, and without it I would likely be curled up in the corner sobbing uncontrollably right now.


Cori and I are expecting our third child in late June of this year.  Isabella, our four-year-old daughter, seems to understand the basic idea that another baby is coming.  Brady, our two-year-old son, is largely oblivious, but all signs point to him being oblivious on most topics.  Both Cori and the baby have been doing well, with several trips to the doctor producing the standard "here's a blob on the ultrasound that we assure you is your baby", and "here's a weird audio clip that sounds like the TARDIS from Doctor Who, but we promise it's actually your baby's heartbeat" stuff.


About two weeks ago, Cori was diagnosed with a kidney infection.  There was no danger to the baby, just a notable amount of pain for the mother.  We got her some antibiotics, some pain killers, and some rest, and she mostly bounced back in a few days.  While in the hospital, however, some blood work was taken that showed an unusually high white blood cell count.  Just to play it safe, the doctor ordered a more thorough blood test that in turn showed some troubling markers, most notably one that showed an increased risk for spina bifada. After a few minutes of scaring ourselves stupid by googling that particular condition, we quickly agreed to go in for an ultrasound to check on the baby. Last Friday, our obstetrician looked things over using his imaging device, eventually recommending that we go to a nearby hospital for a higher resolution ultrasound.


Today I left work early to meet my wife in Peoria for the fancy-schmancy "4D ultrasound".  I'm not exactly sure what the fourth "D" represents, but I think it may stand for "Deny this insurance claim".  After poking and prodding Cori for a few minutes with the "ultrawand" (a term I just invented), the doctor eventually told us that it was a girl (yay) and presented us with some very upsetting news (boo).


I'm going to pause for a moment to tell you the name of the baby.  Cori and I talked when we got home, and felt that given the severity of the diagnosis, it was important that we give our unborn daughter a name.  We wanted a way to speak about her personally, rather than just saying "the baby".  We had already narrowed our list of girl's names down to a handful, and we quickly settled on Sophia Grace May.  Sophia means "Wisdom", and it has become clear that both wisdom and grace are going to be needed going forward.


Sophia, our daughter, who we hope to meet in about 150 days, has several very severe physical malformations.  She has spina bifada in her lower back, a cleft palate, two severely clubbed feet, and one arm that has not formed properly.  Additionally, she appears to have deformities in her head that would prevent proper brain development in several key areas.  Any of these things on their own would be difficult to digest, but all of them together paint a picture of a genetic disorder called Trisomy 18.  I won't bother covering the minutiae of the condition, largely because I'm still getting a grasp of it myself, but suffice it to say that Sophia has a very hard road ahead.  Most children born with Trisomy 18 live for less than two weeks, with less than 1% making it to their 10th birthday.  Now, a caveat:  Sophia has not yet been diagnosed with Trisomy 18.  Her clear physical malformations make it highly likely that she has it, but we will not know for sure until after the results of more tests.


We are headed into some very tough months, and Cori and I would greatly appreciate your prayers.  While I concede that miraculous and inexplicable things can happen, I fear it may be too late to pray for a healthy baby.  In lieu of that, I ask that you pray for two things only... Wisdom and grace.