Reminder

Reminder: No more actual updates will be posted here. Please visit the new blog at aidenmaxwell.blogspot.com. If you're following this blog, you'll want to stop following here and start over at the new site.

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 look up at your address bar right now, you'll notice that the URL of this 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.


(I've already moved the posts over to a new blog, and I'll be putting future updates there. You can view it at aidenmaxwell.blogspot.com.)

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.