Sunday, February 26, 2012

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.

Thursday, February 23, 2012

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.

Tuesday, February 21, 2012

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.

Monday, February 20, 2012

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.

Saturday, February 11, 2012

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.

Wednesday, February 1, 2012

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.