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.