Lift Up Your Hearts!

If you are not among those of our family and friends who are travelling to view the solar eclipse, or who are lucky enough to live in the path of totality, you can still enjoy this facsimile. (Image found on Facebook.)

Here in Florida we are a lot further away from the path of totality than on March 7, 1970, when I lived in Philadelphia and the path was just off the coast. Here's how my father described it then:

On Saturday we watched the eclipse by focussing the light from the sun on a piece of paper through half of our binoculars. It worked well, and the progress of the moon was very clear. At the darkest, it looked like a heavily overcast day outside, so it was not really impressive for this time of the year, but what we didn't see here we did see on television.

All continuing to go well, Grace will return to her New Hampshire home on Monday! This is huge for her and for the whole family.

She will need to return to Boston once or twice each week for clinic visits. At some point, the Dartmouth hospital should be able to handle some of the appointments, but for now, they've decided it's worth the long drives to be able to have the family all together. After all, they've been driving almost that much going the other direction while living in Boston.

Grace has had less nausea, has gotten her formula intake down to 16 ounces per day, is eating more on her own, and is steadily gaining weight. Thanks be to God and all your prayers!

Please pray for:

• Continued progress for Grace
• A smooth transition back to being a family all together.
• Wisdom for Heather, Jon, and the doctors as they figure out the best way to keep Grace healthy while reintegrating her into normal family life.
• Strength for Heather as she handles the normally-exhausting late stages of pregnancy.
• The birth and the baby. I'm rooting for a girl, and in my mind I've already named her "Hope"—but I have a less-than-stellar batting average when it comes to baby guesses.

Grace's next milestone will be the three-month mark (May 8), where if all things continue to go well, her transplant will be considered to be successful. It's only the next of many more steps, but it's an important one.

You need to get out of your comfort zone.

How often have you heard that advice? Or given it?

It sounds good, as do most dangerous ideas that contain a bit of truth. 

Doing hard things can lead to physical, mental, and spiritual growth. But it can also break you. Children grow best when we give them plenty of opportunity to stretch their abilities—not by subjecting them to the rack. That goes for adults, too.

Here's the thing: For many people, living ordinary, daily life is out of their comfort zone, and they get all the growth opportunities they need just making it through the day. Let me say that again.

For many, daily life is out of their comfort zone.

I guarantee that you know people for whom that is true. It may very well be true for you; if not all the time, at least on occasion. The catch is, none of us knows where someone else is in this. We have no idea how hard someone may be working to make it seem as if his life is easy—or even bearable. And that's okay. Life is hard, and growth comes out of the struggle. As long as we remember that it's not our job to push someone else out of his own comfort zone. I know a woman who learned to swim by being thrown out of a boat in the middle of a lake. A lake with alligators. She lived, but I don't recommend the method.

In my experience, when someone tells another person, "You need to get out of your comfort zone," he's less interested in helping that person grow than in getting a particular job done. And hoping that a combination of guilt and the prospect of personal growth will push the reluctant victim to accept. Don't do that.

Push yourself? That's great. Reaching, stretching, working hard, and overcoming difficulties can be good for you and for the world—and it usually feels fantastic (in the end; not always in the middle). But when someone else insists you need to get out of your comfort zone, take it with a grain of salt. Sometimes pain can indeed lead to gain, but it is more likely to lead to injury. And for sure, don't say such a thing to others.

Comfort zone? Comfort zone? Where does that idea come from, anyway? I'll take a poll: Who here are feeling relaxed and comfortable with their lives? Raise your hands. I didn't think so.

There's work to be done in this world, and duty calls us all. Difficult tasks and decisions come to us every day, nolens volens. This is not a call to shirk our responsibilities, but to know ourselves and to respect the needs of our fellow-strugglers.

Christ is risen!
The Lord is risen indeed!
Alleluia!

Easter was not a surprise, nor an afterthought, nor a Plan B.  In the drama of Holy Week, all scenes—from Palm Sunday through Maundy Thursday, Good Friday, and Holy Saturday—point toward the climax of the story:  Easter.  The Author includes some dark, excruciating (literally) moments, but the triumphant last scene is never out of His sight.

Jesus Christ is ris′n today, Alleluia!
Our triumphant holy day, Alleluia!
Who did once upon the cross, Alleluia!
Suffer to redeem our loss. Alleluia!

Hymns of praise then let us sing, Alleluia!
Unto Christ, our heav'nly King, Alleluia!
Who endured the cross and grave, Alleluia!
Sinners to redeem and save. Alleluia!

But the pains which He endured, Alleluia!
Our salvation have procured, Alleluia!
Now above the sky He′s King, Alleluia!
Where the angels ever sing. Alleluia!

Easter's coming, but it's not here yet.  (Except in Switzerland, and some other time zones.)

In view of the trials our family has been experiencing recently, and because it has been fourteen years since I published it in 2010, I decided to bring back a previous Good Friday post.

Is there anything worse than excruciating physical, mental, emotional, and spiritual torture and death?

It takes nothing from the sufferings of Christ commemorated this Holy Week to pause and consider a couple of other important persons in the drama.

I find the following hymn to be one of the most powerful and moving of the season. For obvious reasons, it is usually sung on Palm Sunday, but the verses reach all the way through to Easter.

Ride on! ride on in majesty!
Hark! all the tribes hosanna cry;
Thy humble beast pursues his road
with palms and scattered garments strowed.

Ride on! ride on in majesty!
In lowly pomp ride on to die;
O Christ, thy triumphs now begin
o'er captive death and conquered sin.

Ride on! ride on in majesty!
The angel armies of the sky
look down with sad and wond'ring eyes
to see the approaching sacrifice.

Ride on! ride on in majesty!
Thy last and fiercest strife is nigh;
the Father on his sapphire throne
expects his own anointed Son.

Ride on! ride on in majesty!
In lowly pomp ride on to die;
bow thy meek head to mortal pain,
then take, O God, thy power, and reign.

"The Father on his sapphire throne expects his own anointed Son." For millennia, good fathers have encouraged, led, or forced their children into suffering, from primitive coming-of-age rites to chemotherapy. Even when they know it is for the best, and that all will be well in the end, the terrible suffering of the fathers is imaginable only by someone who has been in that position himself.

And mothers?

The Protestant Church doesn't talk much about Mary. The ostensible reason is to avoid what they see as the idolatry of the Catholic Church, though given the adoration heaped upon male saints and church notables by many Protestants, I'm inclined to suspect a little sexism, too. In any case, Mary is generally ignored, except for a little bit around Christmas, where she is unavoidable. 

On Wednesday I attended, for the second time in my life, a Stations of the Cross service. Besides being a very moving service as a whole, it brought my attention to the agony of Mary. Did she recall then the prophetic word of Simeon, "a sword shall pierce through your own soul also"? Did she find the image of being impaled by a sword far too mild to do justice to the searing, tearing torture of watching her firstborn son wrongly convicted, whipped, beaten, mocked, crucified, in an agony of pain and thirst, and finally abandoned to death? Did she find a tiny bit of comfort in the thought that death had at least ended the ordeal? Did she cling to the hope of what she knew in her heart about her most unusual son, that even then the story was not over? Whatever she may have believed, she could not have had the Father's knowledge, and even if she had, would that have penetrated the blinding agony of the moment?

In my head I know that the sufferings of Christ, in taking on the sins of the world, were unimaginably greater than the physical pain of injustice and crucifixion, which, awful as they are, were shared by many others in those days. But in my heart, it's the sufferings of God his Father and Mary his mother that hit home most strongly this Holy Week.

I love my dad's sense of humor.

Here's another story from his journals, this time from a four-week cross-country car trip we took in the summer of 1968. When we weren't visiting relatives, we camped in a small tent-trailer, at inexpensive campgrounds. Some were wonderful, most were fine, and a few were less so. Of the North Woods Motor Court and Campground, which as far as I can tell no longer exists, Dad said,

It looks like the owner is fixing things up in his spare time, and he hasn't had much spare time.

There were only two picnic tables, and one bathroom. But with only four families staying, that worked out all right, and we were just thrilled to be camping on green grass for the first time in quite a while. It's only worth writing about because Dad's comment makes me laugh.

And also because this campground was the scene of our Great Skunk Adventure, but that is another story.

Here's another observation from reading my father's journals, this one from April 1963.

About 11 a.m. I went out to the car to go out to the Research Lab and the car ('57 Ford) wouldn't start. It was not firing at all. I spent the better part of the lunch hour convincing myself there was no spark. Blackie (the guard at the Building 37 gate) called the man from the GE garage who diagnosed it as a bad condenser.

Since he was not in a position to make repairs, I called the AAA for the first time in years. On the telephone I told the girl that it was not a dead battery and that the trouble had been diagnosed as a bad capacitor. I had hoped this would at least forewarn the man who came, even though he would no doubt want to make his own diagnosis. So in about half an hour he showed up with the question, "What's the matter? Dead battery?"

All he would do was to diagnose the trouble as a bad coil and tow me somewhere. I had him tow me to Dorazio's service station where I left the car to get yet another diagnosis.

Fifty years later and customer service experiences don't look much different. Especially if you try to give them information or ask them to go off-script. After much phone time and several questionable attempts at a fix, a well-known bank is still sending us multiple copies of each e-mail, and they are not interested in hearing what we already know about the problem.

I don't have time this morning to do the post justice, but before I start off on our day of adventure I must pass on a specific prayer request for Grace today: She is scheduled for a bone marrow aspiration. In Heather's words: This includes anesthesia and intubation and all that goes along with that. Please pray for her surgery and for the results. Thank you.

Grace's first day of freedom—or rather, more freedom than she has had in well over a month—went well, for the most part. You can read much more about it here. And see some photos here. The hard part was returning to the hospital for a clinic visit. Boston Children's is great with children in so many ways, but there are some holes, and this was one of them. The poor child had tasted freedom for less than 24 hours when she found herself back in the hospital again, not in friendly 6 West, but in a place not suited for her situation. Because of her newborn immune system, she was not allowed to go to the Resource Room with toys and books, but was confined to the small clinic room with nothing to do but wait, and wait, and wait.

Imagine how she must have felt. Heather says she leaned her head against the door and cried, and cried, and screamed. She had endured all that went before with incredible patience and grace and a great attitude—and now this.

However, Heather was able to persuade a nurse to bring her some books. And next time they will be better prepared; one thing Boston Children's is less good at is communication about what is going to happen!

The good news is that medically the clinic visit was uneventful.

Settling in to life "outside" is taking some adjustment, but is happening. They even dealt successfully with their first NG tube clog.

When Grace woke up, we saw that her food bag was still full! Her NG tube had clogged. Both of us tried to flush it with no success. Jon had a terrible time getting through to the right people at the clinic (and that mis-routing of request ended up getting escalated to superiors.) By the time the right person called back to schedule an appointment to put in a new NG tube, Jon had tried again and this time successfully unclogged it! By the way, the nurse said, "Try Coke; we've had great success unclogging tubes with it," and Jon says that's the first time he's been in a store debating about the medicinal qualities of brand name vs. generic coke....

And here is the heart healing part. Look at this wonderful picture!

Our second-oldest grandson, the Aviator (otherwise known as the Baker), made his first solo flight last week!

And today, Grace was cleared to take off from the hospital and move into their new apartment. Not home, but home-away-from-home. She walked off the floor and into the outside world for the first time in what? More than five weeks?

What does this mean? Here's what I think is right:

• She will return to the hospital for "clinics" a minimum of three times per week, one purpose of which is to make sure the delicate dance between her healing body and her medications keeps on track. Another is to keep checking on her liver and all those other bodily systems that need to be working right.
• She will be receiving nutrition and all her medications through her NG tube; the container's in her backpack, which looks mighty heavy for such a little girl.
• Of course she will continue to be encouraged to eat food by mouth. The other day she managed a half a piece of bacon and some Skittles!
• Her central line is still necessary for testing and other things that might come up.
• Her parents are now responsible for administering a long and confusing list of medications. They're engineers, and probably have a spreadsheet or some such to help.
• There will be a bunch of new rules and routines to get accustomed to.
• Prayers are still very much needed!

Speaking of flying, Grace's two older sisters took advantage of the Boston connection to participate in MIT's Spark program this weekend!

I've lost much of my faith in the New York Times, the motto of which seems to have evolved from "All the news that's fit to print" (first generations) to "All the news that fits, we print" (my generation) to "All the news we think you're fit to hear" (now). Still, I think they might have gotten something right in this recent article: Morning Person? You Might Have Neanderthal Genes to Thank. If you find that behind a pay wall, here's the relevant part:

Neanderthals were morning people, a new study suggests. And some humans today who like getting up early might credit genes they inherited from their Neanderthal ancestors. The new study compared DNA in living humans with genetic material retrieved from Neanderthal fossils. It turns out that Neanderthals carried some of the same clock-related genetic variants as do people who report being early risers.

I'm not surprised. Supposedly, I have more Neanderthal genes than 91% of all those who have been tested by the popular 23andMe system. And I'm definitely a morning person. I generally wake up naturally between 4:00 and 5:30 a.m. bright-eyed-and-bushy-tailed. "Sleeping in" means sleeping till 7; that's rare, and generally doesn't happen unless I'm sick ir out of town.  I'm not sure why the latter changes my sleep patterns; I'm sure it's part the change in daylight hours, and in part that my routines have been interrupted. In any case, I do my best work in the morning, and unless I'm hot-and-heavy into some interesting work, I'm pretty much useless after 9 p.m.

The odd thing is that I didn't discover my morning-personhood until later in life. Clearly environment has a strong effect. My parents were much more night owls than I am, routinely staying up past 11 p.m., which influenced my own bedtime. And a life ruled by prime-time TV hours (8 p.m. to 11 p.m.) and morning alarm clocks (school or jobs) is automatically a life of disrupted circadian rhythms.

It was our children who introduced me to the joys of the early morning hours. I didn't realize it so much at the time, as they also introduced me to the phenomenon of chronic sleep deprivation. I was getting up early, but also staying up late. As every parent knows, when you have children, that slice of time we like to call "our own" diminishes drastically. Our kids may have been in bed by eight o'clock, but I habitually stayed up until 11 simply because it was the only time I could do any kind of concentrated work. Not that you could call it quality time for the way my brain works, but I tried.

Thank you, dear Neanderthal ancestors, for giving me the genes to enjoy God's beautiful mornings. It's great to finally be in a position where I can take advantage of them. I could insert here a rant against Daylight Saving Time here, but you already know how I feel about that!

It's Day +33 for Grace, and suddenly things are looking more positive. I have no official updates since Day +30, but yesterday our video call with Heather and Grace was missing something. Grace was in the playroom without that monstrous, well-festooned pole that had followed her everywhere! In its place she wore a backpack that holds the nutrition and medications that flow through her NG tube. She claims it's too heavy, but it gives her more freedom, and perhaps by now she's had a chance to get accustomed to it. It's another step towards being discharged from the hospital, which is suddenly looking to be something that might actually happen soon.

"Discharged," however, doesn't mean she gets to go home yet—and with good reason. But she'll get to be at the apartment with her family, only a few blocks from the hospital in case there's an urgent need, and where she can come into clinics three times a week. It's a big step!

I can't emphasize enough the benefit of Boston Children's liberal visitation policy for the mental health of not only Grace but of the rest of her family. Which made me think about how horrible it must have been to be in this situation during the covid lockdowns, and led me to a realization—which was not my own, but Heather's, though I've expanded on it.

It's no secret that we've all been frustrated by the fact that it took so long to get Grace a correct diagnosis, when the signs were clearly visible when she was much less than a year old. When Heather reported her suspicions, her concerns were dismissed and she was berated for doing her own internet research. For almost two years multiple doctors insisted that Grace's persistent intestinal problems were just food allergies that she would outgrow. But that was incredibly, dangerously, wrong—and she went in a week's time from "I'm still certain it's food allergies" to "Get this child to the emergency room NOW!" I think there's every reason to be angry about this—all the more so because we know other people to whom very similar scenarios have happened.

But what if Grace's leukemia had been discovered when it "should" have been? The covid lockdown and vaccination requirement days were an especially dark time for those in need of medical care. Nothing justifies having so badly missed an obvious diagnosis, but maybe, just maybe, this is the better time.

From Dad's journals, January 1967

This happened at a meeting for Girl Scout parents:

The main purpose of the meeting was to discuss finances for the European trip, but Mrs. B. did mention that as a part of their challenge work, they had had some discussions of dating. Questions had come up like "How far do you let a boy go on a first date?" and "What is heavy petting?" Apparently one of the girls answered the questions in hair-raising detail as she had been told from a senior girl. Mrs. B. felt that the girls needed answers to some of these questions, but were hesitant to ask their parents, so she was suggesting we have a talk with our daughters. Then she turned to me and said, "You don't have to worry about Linda—she said that if she had a million dollars she would buy a science lab and lock herself in."

That's not what I would do with a million dollars now, but I still think it was a reasonable answer.

I enjoy reading these journals both when Dad describes events that I remember in clear detail, and those—like this one—of which I remember nothing at all.

It's Day +29 for Grace, and the last official update I have is for Day +27, but she is making progress. We've been doing some video calls, and the hardest one was a few days ago, when she was so obviously very tired and in pain. But since then she has seemed perkier and even managed some heart-warming smiles.

She is back on NG tube feeds instead of IV, and they are not so hard on her liver. She's even managed a few sips and bites, though a lot of what goes in is still vomited up. She has been known to become nauseated when hearing someone talk about food, and when looking through her sign language book and coming to food-related signs. To be willing to try sips and bites is progress—and courage!

Her liver is still struggling with veno-occlusive disease, but they expect it to recover in a week or two, all going as it should.

Last I knew here ANC was 1230.

They also did a chimerism test, which measures the percentage of her cells that are Faith's. The goal is 100%, and I know that later on in the process anything less is scary, since it could signal the start of a relapse. But the medical people were pleased that Grace's chimerism is 97% so early in the course of events.

Then there are always non-medical issues to deal with, such as an HVAC failure that made them have to switch rooms (hopefully for just a short time) and the need to find another apartment because their stay at the current one is about to run out.

But I need to run, so that's the better news update for now.

Like many people this morning, I tried to check Facebook.

Oh, crap, they're making me log in again, and they've changed the system. I hate it when they take a working system and try to make it "easier." Just click the profile picture of the account you want.

Forget it, I'll log in the regular way. Nope, that doesn't work.

[After trying other options] Okay, I'll play. Click the image. Put in password. Invalid password? Are you kidding me? [Double check password] No, that's the right one. Now what?

Forget it, I'll just use my phone. What? They're forcing me to log out? And still saying invalid password?

[Resort to Google] No new news.

[Ask my friends] Can you get into Facebook? Okay, they have the same problem.

[Try Google again] Looks like a global problem. Instagram and Messenger are also down.

[Check Twitter] Hmm, lots of people gloating.

So, is it Chinese/Russian/North Korean hackers who now have all our passwords and personal information?

My own theory is that the Meta folks decided to implement some login changes, threw the new code in without adequate testing, and screwed everything up. This is based on my all-too-real experience with the way software is written, tested, and implemented these days. (If that sounds like our recent experience with pharmaceuticals, well, yes, but that's a story for another time.)

I really don't want to give up Facebook. Like it or not, even though I have my very own blog, it's through cross-posts on Facebook that I keep in touch with a number of friends. But maybe I could get used to it, like getting accustomed to having just one car after 40 years with two. Maybe it could be fun for a while, as when power outages force you to read a book instead of watch TV.