Light shines in darkness

Here is one more Advent site, thanks to counselor Susan S here at RVA.  A daily devotion is posted, including scripture, prayers and a meditation.  The site is:

http://www.d365.org/followingthestar/

Below the short thought on Mark 13:24-27

Many of us carry the false assumption that the goal in life is to be happy. That is why so many people around us mask their struggles and claim a false sense of happiness. Doesn't God want us to be happy? God cannot intend for us to be in darkness, depression, despair.  

Mark tells this story so we would not forget that darkness cannot stop God. Mark calls us to be honest. Yes, there is darkness. It hurts when someone close to us dies. Our hearts break when a friend abandons us. The pressure to succeed smothers us at times and we don't know if we will ever see the light of day. The one who comes may come right in the midst of that darkness. Darkness does not stop him from making all things new. True, the one who comes may not bring simple happiness. The one who comes will bring meaning.

Michelle Thomas-Bush

Advent

Today begins Advent, a season of preparation, repentance, anticipation, and party. I've been looking for some resources to celebrate with our family, and here are a few I've found.

1. Advent Conspiracy: Worship fully, Spend less, Give more, Love all. http://ac.wcrossing.org/default.aspx?page=3684

And here is their 2011 short video on youtube: http://youtu.be/9IN0W3gjnNE

2. Daily Scripture readings from the Anglican Book of Church Order: http://www.crivoice.org/advent2.html

3. A booklet of Advent readings and meditations from my friend Bethany's church: http://fairmount.liberti.org/advent/

If these don't come up as links, then copy and paste into the browser (sorry!!).

Unexpected Cost

6:30 a.m., a light rain in the chill of the early morning, and a dozen bleary-eyed students balancing stuffed duffels into the back of a van, heading home.  Yesterday they did the traditional end-of-term countdown, and were released to clean up and pack.  By this morning the bustling boarding school was nearly empty, eerily quiet and damp.  I help Acacia load her suitcase, checked her passport, her money, her phone.  Then a big hug, and I'm standing back by my car holding in tears that rise and surprise me.  

When we agreed to bring our friends' daughter into our home, I thought about a lot of things.  Whether she would be too homesick.  How she would find the volume and pace of our family in comparison to hers.  Whether she would find friends, or regret not living in the dorm.  Whether we would thrive together.  How the sibling relationships would work out.  It is an awesome responsibility to parent someone else's child, and I expected some sense of relief if we made it through our first three months relatively intact.

Instead, I felt only grief.  Another precious person to hold and release.  Another important relationship that has huge gaps of space and time.  Another piece of my heart sent away.  Four kids were going to leave our home eventually, and now we have to survive five.  

Be careful whom you love, or just let the cost sink in and hurt?  

stuffed-animal-love

As Thanksgiving turns to Christmas Consumption, and we read of people flocking to Walmart and the Malls .. . here's an idea for de-cluttering. Would you like to pass on some of your small stuffed animals, beanie babies or about that size? The sophomore class at RVA (which we help sponsor) does an annual Valentine sale to raise money for the class. We're in charge of creating gift baskets which parents can purchase for their children as a reminder of their love while separated far away at boarding school. I know my kids have been very attached to stuffed animals, particularly in stressful times of life. So along with candy, we thought it would be fun to include a little stuffed animal in the baskets.

If you want to donate some of your slightly used but still lovable animals for this cause, mail them by Dec 10 to Luke who will fill his luggage with as many as he can to transport them here:

Luke Myhre

PO Box 201510

New Haven, CT 06520-1510

If we get more than 50, we will pass them on to the children at the hospital. Thanks so much. No doubt the suite of guys at Yale will get a kick out of this influx into their dorm too.

Thanking Whoever . .

. . out there sent up some specific, directed, effectual prayers between late-Monday and mid-Tuesday.

Because we were enveloped in a cloud of grace. I picture this like the glory-cloud that fills the temple, the palpable presence of God. Monday night, I was on call, only I didn't get called. At all. This just does not happen. When my alarm went off at 6 I sort of panicked, the way you do when you're a young mom and your baby never cried all night. I had left two babies intubated in the ICU and the ICU ALWAYS CALLS. I got out of bed and re-checked the call schedule, and only then did I realize that the ICU doctor on call was one of the few who handles paeds cases (much better than I do I might add). And the intern I was on call with is extremely competent, so she just messaged me in the morning about what she'd done overnight. Wow. Then I went to work and discharged 6 more patients, in addition to the 9 from the day before, with only 1 admission, bringing our service down from 24 to 10. When we have 24 patients, you really can't even eat lunch or go to the bathroom, it is nonstop. When we got down to 10, I actually took my medical students to the cafeteria for chai and had personal discussions about paediatric medicine and their lives. An idealistic consultant moment. Then I went to the office to check on next month's call schedule and found out I was NOT ON CALL for Christmas, and it looked great. One of my patients whom I've cared for his whole life, Bedan with major malformations, smiled at me. He is much better and ready to go home, and sat in his bed beaming from his little yoda-like face. This was not my typical day at the hospital.

Then I got home and found out the best news of all: Caleb was nominated by one of our VA Senators for the Air Force Academy. This senator received 740 applications, offered about 30 interviews (Caleb's was by phone last week), and then selected 10 for nominations. Only one of those ten will be appointed by the academy, so he still has some odds to beat. But this was a huge relief, to know he still has the chance. (He has not heard from the other Senator, or our Congressional Representative, or the Vice President, so if any of those also nominate him his chances go up). About 4000 kids are nominated and 1000 admitted in a given year. He's such a great kid, I see deep things happening, and I hope for the best for him, wherever that is.

And did I mention that my Kindle, which had been in a deep unresponsive coma which I feared would be fatal, revived after my neighbor advised me to hold the on switch over for a full 15 seconds? And this happened later, but still counts in the tally of super-thankful: Julia was chosen for the Varsity Girls Football (soccer) team, and Acacia for JV. This is huge.

By Tuesday evening, going up the hill to the jazz band concert with Caleb after having actually managed a creative and nutritious dinner ON TIME for the whole family, I thought, someone is praying, and why do I ever worry?

Which was, of course, a short-lived triumph. Because that grace-cloud did not last very long. In the last 24 hours, life settled back a little towards normal. That beautiful call schedule, it turns out, had to be totally changed when other doctors objected to being on call Christmas, so now Scott and I are (though we're working out a way to share so others take Christmas Eve and Boxing Day). Internet issues slowed me down, went to watch soccer scrimmage and ended up with a student with a broken arm, fighting general single-parent tiredness, one kid forgot to turn in homework, another bombed a test, finals-week edginess as everyone struggles to get things finished.

Yes, my thankfulness is very fickle. Just like the Israelites. God might part the Red Sea one day, but the next I'm ready to complain about food. A 24 hour stretch of an amazing series of things-going-right is quickly forgotten when I get back to a normal day. You'd think I would be on a faith high over that senatorial nomination for weeks, instead of worrying about the next nomination or application.

I suppose I'm learning that thankfulness is a daily discipline. Like manna, one day's does not spill over to the next. I think that a "series of fortunate events" will inspire me towards perpetual thanks, but it doesn't. I have to be thankful again the next day, and the next, even when (especially when) the circumstances are less ideal. Perhaps if days of triumph worked thankfulness in us, God would give us more, but He knows that we haven't changed in several thousand years, and no matter how richly He blesses us we still have to be prodded towards thankfulness.

But I'm still grateful for whoever prayed, and would welcome you to do so again.

Worth

A week goes by, and the baby who barely lived through the night and upon whom I gambled the $200 surfactant treatment, thrives. (see http://paradoxuganda.blogspot.com/2011/11/who-is-worth-it.html) Here he is with a morning yawn as his smiling mother gets ready to feed him through the tube. He's gaining weight, off of oxygen completely, and behaving like a reasonable preemie. I admit I did not expect him to make it this far. But God thought otherwise. He still has a tough life ahead, even if he escapes infection he will have twice the normal chance of dying here, and he will lose his mother before he grows up. But for the present moment, they are a happy pair. This is Tume, the severely malnourished 9-year-old girl who was transferred from NE Kenya with TB, a dislocated hip, sores where her fragile skin had broken down as she lay immobilized in bed, and allergic reaction to her drugs. Two weeks ago she was not moving or talking, let alone smiling. Now she's up with a walker, coloring pictures, and chatting. Progress. But something about the poignancy of her "Prom Queen" shirt tugged at my heart. Her mother is also HIV-positive. This girl's challenges include eventually being orphaned, and possibly being lame. A bit far removed from some other distant little girl whose cast-off shirt seems shallow and vain in this context. Yet I hope Tume feels beautiful too, and loved and admired in the same way the prom queens do. And guess who is going home today? The little girl who stopped breathing in casualty just when the power cut off (http://paradoxuganda.blogspot.com/2011/11/high-and-low.html). It was a rocky course in the ICU but she's no longer convulsing, perkily alert, and possibly healed. On a long Monday it is good to be thankful for those who DO get better. And to be thankful for prayerful blog readers.

Wandering the hospital with my IPhone, and pondering

This is my first full-Swahili patient visit. Our MCH (Maternal and Child Health) clinic bursts with charts, especially on Mondays. While I would like to stay free to consult on the patients already screened by the interns, clinical officers, or medical students, they sometimes get bogged down and I reluctantly pick up a chart on my own and at least try to get started before calling for translation help. I'm embarrassed by my stumbling slow progress. But for many reasons, not all of them noble, I just haven't invested the time and effort I should in Swahili. I do work with an excellent language helper two or three times a week, but I must be one of his more disappointing students. So this week I really celebrated when I called this baby back to an exam room, had a conversation about her condition with her mom, and finished the whole visit with no English and no help. I have to admit it was the simplest patient of the day. She was healthy. Her mom was returning for a check up after an admission to the hospital, and answered "no" to all my limited "Is she vomiting" type questions. I have far to go, but I'm still thankful for this baby step. Charity narrowly survived severe dehydration this week. I found her on Monday morning, having arrived in the middle of the night. When her sodium came back as 191 (almost the limits of the machine) I transferred her to the ICU for management of her fluids. She was also in kidney failure. But a few days later she is greatly improved. Her mom lost her previous baby to the same problem exactly a year ago. Pray for her. In today's political climate, I'm not sure just why a parent would choose to name their child Gadaffi, but this diminutive twin enters life with the burden of a very low birth weight, a need for a skin graft to heal a terrible IV extravasation burn from another hospital, and an ominous name. This darling little girl, Karen, was my patient months ago when she was transferred to our NICU for the expert care of our surgery team after being born with a developmental defect in her perineum-no rectal outlet. I remember how hard it was to get her to gain weight post-op, and when I last saw her she was scrappy and scrawny. In spite of a dangerous gastroenteritis and bacteremia with high fever a few days ago, she's healed and perky and almost ready for her next surgical step in creating a functional perineum. This is Bedan, who I posted pictures of months ago. He was born with a front0-nasal encephalocele and mid-facial cleft (his face was split open from between his eyes down to his lip, with a balloon of brain-lining-tissue and fluid bulging out). After a month or more in the NICU our surgeons were able to piece his face back together, and he returned this week for the next step in his reconstruction. He's about tripled in size as his mom feeds him well! Unfortunately he came with a bronchiolitis, a temporary lung infection that would have made his next surgery too dangerous, so it had to be delayed. His mom was abandoned by her husband after she delivered such a deformed child, so she struggles to get help to pay for his medical expenses. But she's a brave and dedicated lady doing a great job.

These are all kids who remind me that what looks like a disaster often turns out to be an amazing story of healing, or love, or something else intangible and important. Our moms' prayer group guide this week included this paragraph, even more poignant in light of the top news story out of Penn State football: " Where they (our children) have been the victim of evil, I pray that You would heal, restore, and lift them up above it. Bring good out of it. Just as You raised up Joseph to save a nation after evil plots on his life were carried out, I pray You would raise up our children to great things in spite of the evil perpetuated on their lives. In the meantime, enable them to navigate through this time and find “grace in the wilderness” Jer 31:2." What a powerful reminder that God is at work even when the hard realities of a fallen world impact our children. Whether it is having an application denied, or being born with brains bulging from one's face, or being abused by supposedly responsible adults, our kids suffer and our hearts ache, but we cling by faith the the story of Joseph, that evil can be transformed to bring good.

Grit / Glory

I'm a mom who prays for Glory.

And unlike one of my friends, who responded to her son's match-winning glory goal as an answer to her prayer, my prayers along these lines don't seem to get the answers I would hope for. It isn't very noble, but in my heart I've struggled with that.

This weekend I started to get a glimpse, that while I'm hoping for glory, God is working on grit.

Caleb's final game of his high school career was Friday afternoon, the Semi-finals in the Association of International Schools of Kenya league. It was an exciting match, extremely close, with passionate fans and reversals of fortune as one team went ahead, and then the other. We ended regulation time 2-2, but then the opponents scored in the first five-minute OT period. In spite of losing, it would have been a memorable end . . . except that Caleb hardly played. Perhaps he would not have been subbed in at all if the other boy who plays the same position hadn't chosen to leave the field, winded or mildly injured I'm not sure, and the team and coach yelled for C to go on. But within a few minutes the other boy had recovered, C was off, and that was that. He's fast, smart, accurate in passing, dedicated, tireless, but not as physically large as the other boy, and the ability to overpower, push, and take hard shots from far out is highly valued on the team. So in key games like this, he sits on the bench. I felt bad for him. But that was just me. After the game, Caleb has two comments. One, an admiring observation that the boy he "competes" with for the position played so well, had a great game. And two, that he really loves his team. No complaint, no bitterness. Once again I needed to learn from my kids. I've been hoping for that moment of glory, the goal scored, the key pass, the unforgettable save. Instead Caleb has learned a lesson in team support, good attitude and perseverance. I also found out yesterday he applied to manage the girls' varsity team, a big time commitment to a sport he won't even get to play, hopefully to spend more time with his sister if she is chosen. Another sign that he supports the coaches and the program. He was also inducted in the NHS this past week, after being rejected 3 times he went ahead and applied a 4th time. That boy has grit, and that grit will take him further in life than a glorious reputation.

Jack's final game was glorious, for the team at least. They thought they would not make it to the play-offs, but scraped by. Then they won semi-finals, and on Saturday won the JV-level finals for the league. The coach had even commented that he hoped Jack would score a goal on his dad's birthday . . and he came so close, we all jumped in the air cheering, until the ball bounced off the post at the last second. Once again it was his friends who got the glory. Each game that Jack plays he comes away more determined to improve. He watches football whenever he can, thinks about it, talks about it, practices. He has three more years to develop in size, speed, pubertal mass, skill. Maybe a bit more success this early on would boost his confidence, but it might have also taken the edge off his drive to improve. He does not yet have the grit that Caleb does, but I hope it is developing.

A couple months ago Scott came across a NYT article about a school in NYC that is trying to redefine success in terms of character development rather than test scores. They looked at characteristics that predicted future competence, and the first one was just what I've been talking about, grit. Grit that comes from struggle, from some experience with failure and disappointment.

And as I've pondered all these things in my heart, a Bible story came to mind. I'm not the only mother who would like to see her sons pushed ahead, recognized for the amazing people that they are. In Matthew 20, Zebedee's wife puts her request in to Jesus, that her two sons be honored with high positions in the Kingdom. I'm sure that's the same thing I pray. Jesus answers that the path to glory takes serious grit. Can they drink the cup of wrath, pain, judgement on behalf of the world? Can they bury themselves, even die? In the Kingdom reversal, leaders are servants, who seek sacrifice not glory. Glory is a consequence of faithful perseverance, not a goal.

I doubt I'll ever be cured of praying for people to make the team, pass the test, get the SAT score or college acceptance. But I'm beginning to suspect that there are more important prayers as we put our kids in God's hands, prayers He's answering even if I don't really have the courage to pray them. Caleb has been teaching us this since he was a fetus with his life on the line, but I guess 16 years haven't been enough to really get it.

Praying for grit, and trusting God for glory.

Who is Worth It?

Last night I had only been asleep a little more than an hour when my pager went off.  1 a.m.  We have a 28-weeker in the nursery, please come.  

I arrived to find a pink little infant boy being assisted with his breathing, as his tiny rib cage pulled hard to move air into his not-ready-for-this-world lungs.  He was tiny but kicking. We've seen smaller, but few survive who are this young (28 weeks) here. His HIV-infected mom had been seen a few days ago with serious bleeding, but refused admission.  Instead of the therapy that might have prolonged his 6+ month (28 week) gestation to a survivable 30 . . or stimulated the development of his lungs  . . she went home and perhaps expected death.  Last night she returned in late stages of labor and popped out a reasonably sized (1270 grams) 28 week boy.  

A boy who proceeded to not cooperate with the program of living.  An all night struggle.  The parents said they could not afford the treatment (surfactant), about $200, which replaces the lung lining that is not yet developed in this stage.  So we tried him on our bubble CPAP, oxygen and pressure to open lungs and help breathing.  But he did not do well, and his xray showed significant respiratory distress syndrome, so after 2 hours I decided we should just give the surfactant anyway and dip into our Needy Children's Fund to cover it. This is not an easy decision as the funds are very limited, and using them on one baby means we won't have them for another.  So I had to struggle:  was this baby a good choice?  Might he survive?  It is very very hard at 2 or 3 in the morning, alone, to weigh this.  I think it was his little kicking feet.  He seemed to be a fighter.  

Nothing is simple, I intubated him but thought I'd tape the tube in and get an xray, which led to the tube coming out, which led to more attempts and having to stop and resuscitate him several times, and help from a friendly anesthesia nurse who happened to be in for another C section in the middle of the night (bless Lucy).  We gave the surfactant and he seemed to respond, his oxygen sat level was over 90 (good).  Somewhere in there after attempting IV's in all extremities and finding the veins too fragile, I put in an umbilical venous catheter for the first time since residency (quick review of procedure in Harriet Lane and then forge ahead).  

Ah, I thought, this has been a long night, the intern was busy elsewhere so I ended up writing up all the notes too, and by 4:30 I was walking out the door, tired but at least I felt we'd done something (evaluated four other sick babies over those hours too, several who were critical inpatients and one new admit).  

Home, the prospect of almost 2 hours of sleep, climb into bed, pager goes off immediately, stat page to nursery.  Seems the preemie didn't respond well for very long.  Same trek, full moon, mysterious clouds, sleepy guards, back to the nursery.  We checked everything we could, bagged some more, tried to get an ICU bed, but there was none available.  In my heart I didn't think he was a good choice for the limited ICU resources either.  28 weeks, four days at home with mom bleeding, no steroids, poor response to surfactant . . . so with a heavy heart I brought the mom in to see him for the first time, in case it would be her last.  We stroked him, and watched him struggle with oxygen sat levels down in the 70's.  Not good.  I pulled each nurse aside, explained what had been done, asked if they had any other ideas, and made the hard decision for the team that we had reached maximum effort.  Now it is in God's hands, I told them and the mom.  Meaning in God's hands to die, I thought, though I prayed that he would live.  We started calling the chaplain.  I left at almost six, the full moon not quite setting, the birds beginning to stir.  There was nothing else for me to do there, and I wanted to be home when the kids woke up (only one parent now, Scott is en route to WHM meetings in America).  As I got them breakfast almost an hour later I called the nursery, a little surprised not to have been called back to his death, but realizing he might hang on for some hours.

How is our preemie?  Oh, he's fine.  What do you mean, fine?  Well, his sats are over 90%, and he looks comfortable.

This baby may or may not survive in the long run.  He has far to go.  Is his life worth $200?  An all-night effort?  Is it worth that even if he doesn't live more than a day or two?  Did I make the right decisions?  One can always choose life whole-heartedly, but in a limited-resources setting one life might cost another.  He is occupying our last incubator.  The next baby might not be able to get the surfactant because he did.  I might have caused his parents longer agony and larger bills, which in this HIV-positive family might impact the health of the three children they already have.

When I put him in God's hands, I didn't really hope for a lot.  God doesn't always plan things the way I do, and my prayers have become less certain of their outcome.  God's hands did not imply that I was, or am, sure of his survival.  But God knew our limits, and with at least our one available incubator and medicine and oxygen and tests and warmth, I think we were meant to offer all we had.  Perhaps it was a widow's mite that will be multiplied to life.  Perhaps not.  This baby's worth is equal to mine, or the President's, or the richest man alive, so we trust that if God does not heal him now, it is not a matter of being unworthy, but a matter of mercy and a better plan.  

High and Low

High of today had to be assisting in the delivery of a baby in the front seat of a matatu parked in front of the hospital . . alerted to the evolving scene as I saw another patient in casualty but heard the screaming mom outside, who just couldn't make it those last few yards inside. I took the blue baby girl and RAN all the way to the nursery, but by the time I got there she was crying, and all was well.

The rest of the day blurs together: rounds, teaching, notes, labs, run home to start some bread dough, consults. The usual, as Kijabe is a mecca for the floppy, the weak, the neurologically devastated, the wasting away. More seizures and poor growth, calculations and xrays. Low is that Scott is on call for ICU, but all 4 patients there are pediatric, so when he got called in the middle of dinner I ended up leaving our 7 guests and 4 kids to fend for themselves and joined him for a few hours, as he intubated two critically ill babies and we sorted out their therapy. Then the real LOW came in precisely the same spot as the high, 12 hours before . . standing by the same bed . . admitting an 8 month old with intractable seizures, maybe a viral encephalitis. As I talked to the intern the nurse said "Doctor!" and we looked at the baby, who had been in respiratory distress, and now completely stopped breathing. Flat. Still. Nothing. The intern reached for the ambu bag (ventilating equipment) and I reached for the baby and at that very moment the power went out. Completely. Pitch black nothing. I fumbled in my pocket for a tiny flashlight I carry, tried to get the mom to hold it so I'd have hands for the baby, she was in hysterics and unable, I grabbed the dad's hands and showed him what to do, and at that moment the power came back.

High number two: came home just now to find the girls had washed all the dishes and put everything away. I love boys, but tonight I have to say, hooray for girls.