Ten Great Middle Verse Christmas Lyrics

I love Christmas carols.  Many of us know the first verse of Christmas songs by heart, as we have sung them since we were children and hear them ubiquitously in the weeks after Thanksgiving.  But many of these songs have incredible middle verses that we aren't very familiar with, that only get sung on Christmas Eve (if ever).  So I am posting this as a tribute to all the beautiful written, theologically rich middle verses to Christmas hymns that often get buried.  Please post your favorites as well!  (p.s.  Last year, I wrote my thoughts on Advent - many of these verses reflect the same sentiments as my post.)

Listed in random order:

O come, Thou Day-Spring, come and cheer
Our spirits by Thine advent here
Disperse the gloomy clouds of night
And death's dark shadows put to flight.
Rejoice! Rejoice! Emmanuel
Shall come to thee, O Israel.
(Oh Come Emmanuel)
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Truly He taught us to love one another

His law is love and His gospel is peace

Chains shall He break for the slave is our brother

And in His name all oppression shall cease

Sweet hymns of joy in grateful chorus raise we,

Let all within us praise His holy name

(Oh Holy Night)

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No more let sins and sorrows grow,
Nor thorns infest the ground;
He comes to make His blessings flow
Far as the curse is found,
Far as the curse is found,
Far as, far as, the curse is found.
(Joy to the World)
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Mild He lays His glory by

Born that man no more may die

Born to raise the sons of earth

Born to give them second birth

Veiled in flesh, the Godhead see

Hail the incarnate Deity

Pleased as man with men to dwell

Jesus, our Immanuel

Pleased as man with men to dwell

Jesus, our Immanuel

(Hark the Herald Angels Sing)

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Yet with the woes of sin and strife
The world has suffered long;
Beneath the heavenly strain have rolled
Two thousand years of wrong;
And man, at war with man, hears not
The tidings which they bring;
O hush the noise, ye men of strife,
And hear the angels sing! 

O ye, beneath life's crushing load,
Whose forms are bending low,
Who toil along the climbing way
With painful steps and slow,
Look now! for glad and golden hours
Come swiftly on the wing;
O rest beside the weary road
And hear the angels sing!

For lo! the days are hastening on,
By prophets seen of old,
When with the ever-circling years
Shall come the time foretold,
When peace shall over all the earth
Its ancient splendors fling,
And the whole world give back the song
Which now the angels sing.

(It Came Upon a Midnight Clear)

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Born your people to deliver, 

Born a child and yet a king;

Born to reign in us forever, 

Now your gracious kingdom bring. 

By your own eternal Spirit 

Rule in all our hearts alone;

By your all-sufficient merit 

Raise us to your glorious throne.

(Come O Long Expected Jesus)

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And in despair I bowed my head

"There is no peace on earth," I said,

"For hate is strong and mocks the song

Of peace on earth, good will to men."

Then pealed the bells more loud and deep:

"God is not dead, nor doth He sleep;

The wrong shall fail, the right prevail

With peace on earth, good will to men."

(I Heard the Bells on Christmas Day)

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How silently, how silently,

The wondrous Gift is given!

So God imparts to human hearts

The blessings of His heaven.

No ear may hear His coming,

But in this world of sin,

Where meek souls will receive Him still,

The dear Christ enters in.

(O Little Town of Bethlehem)

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Good Christian men, rejoice,
With heart and soul, and voice;
Now ye hear of endless bliss:
Jesus Christ was born for this!
He hath oped the heavenly door,
And man is blessed evermore.
Christ was born for this!
Christ was born for this!

(Good Christian Men Rejoice)

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Shepherds, in the fields abiding,
Watching o'er your flocks by night,
God with man is now residing,
Yonder shines the infant Light;
Come and worship,
Come and worship,
Worship Christ, the newborn King!

(Angels from the Realms of Glory)

On Bill Bryson's Short History of Private Life

 I just read Bill Bryson's "At Home: A History of Private Life".  Bryson provides a concise history of domestic life by moving through each room of the house and explaining the history of items and concepts related to that room.  (So in the kitchen, you learn about why salt and pepper are our staple spices; in the bathroom, you learn about the history of hygeine and sewage; etc.)  If that description sounds compelling, you will probably love the book; if it sounds dull or hokey, you will probably hate the book.

I fall in the "love it" camp, although I admittedly skimmed some of the chapters in order to get the book back to the library in time.  (This book is probably best read a few chapters at a time, with breaks in between to read other types of books, so that you don't get information overload.)  Here were my favorite parts:

Perspective -- This is my favorite thing to take away from historical non-fiction books, and this book is loaded with facts that provide perspective on where we are now, how we got there, and how it could be different (and almost always, worse).  Perspective can come in a number of forms:

Only loosely related to my "perspective" section, but funny.

• How good we have it now -- We have indoor plumbing, electricity, and appliances that automate our hardest chores.  We have the option to keep our houses comfortably warm in the winter and comfortably cool in the summer.  We have abundant food and clothing, and on top of that, most of us have tons of extra stuff to make our houses more beautiful, personalized, and fun (or sometimes, just more full of boxes).  
• How it's easy to see what doesn't make sense about a different time and place, while it's much harder to see the silliness in your own culture - Bryson describes notable past fashion trends (women wearing their hair in 2 foot poofs that would sometimes catch fire), time intensive and dangerous working schedules (including 4 year olds working as chimney sweeps!), and changed social attitudes on parenting, sex, hygeine (bathing once a year or less?!), and all kinds of other things.  These things seem so obviously non-optimal now - it's interesting to think about what cultural blinders we have to the crazy that's happening in our own time and place.
• How some things are much older than we might imagine - cave men wore shoes that rival modern hiking boots in comfort and grip.  
• While other things are very recent -- forget about being totally up to date - the concept of being "comfortable" in your home is only about 200 years old.  Before that, you couldn't expect to have room temperature warmth, or keep out all the elements perfectly, or have really desirable sleeping and sitting arrangements.  
• How people don't feel jealousy or envy or longing for a thing until they realize it exists -- Even the richest households had to keep themselves entertained by candlelight at night until electricity was invented.  No one minded gathering around the candlelight for knitting, reading, and playing cards, because no one imagined an alternative.  But now that we have electricity, you would be hard pressed to find an American household that ever spends an evening like this, except maybe in a storm or for a designated "turn off technology" night.  

Context --New parents-to-be who research labor and delivery methods will learn about the possibility of home birth.  In support of home birth, you might read the "supporting" fact that the vast majority of babies throughout history and in other cultures are born at home, with the implication that because most people have done childbirth this way, it's the most natural and best way.  The fact that the overwhelming majority of births happened at home is true, but it is significantly contextualized by these statistics:  a woman's odds of dying during one of her childbirths used to be 1 in 8, and 1 in 4 babies died in their first year.  Another labor and delivery procedure that often gets described unfairly:  C-sections.  While it might be true that they get utilized more often than they should (I haven't done any research on this), it's also important to remember that they provide an enormous service.  Before C-sections (and before surgery was a safe option in general), if babies got stuck, women would just continue to labor (sometimes for up to THREE WEEKS) until either the mother or baby gave out.  People didn't do hospital births or C-sections throughout most of history because it wasn't an option, or they couldn't afford it, or because until very, very recently (like when doctors learned about germ theory and anesthesia, which happened less than 200 years ago), there was nothing doctors could do to make things better and a lot they could do to make things worse.  I am so glad that we now have hospitals available, with knowledgeable doctors and modern medicine and much safer options for labor and delivery.  (To be fair, home birth is a lot safer than it used to be as well, thanks to modern medicine -- but this section is intended to be a defense of hospital births.)

Right Person in the Right Place at the Right Time and it Changed the Course of History moments -- If you like this framing of historical events, this book is chock full of those kind of facts.  For example:  a man named Canvass White invented hydraulic cement in the 1820s, which allowed the Erie Canal to be constructed and goods to be shipped efficiently from New York to the rest of the country, which transformed Manhattan from an obscure town of 10,000 to a major economic center of half a million people in less than 50 years.  It also gave America a major advantage over Canada at a time when it was still an open question who would be the economically dominant country in North America.  While I think this type of thing can be overdone (negating the possibility that someone else could've discovered the same thing soon after, or some other clever way to do the thing could have been worked out), it's fun to imagine an alternative world where, were it not for that one person in that one place at that one time, New York City could be a tiny town of no importance, or Canada could be the world power to be reckoned with.

Thankfulness about good care for Joshua

I've written lots of posts about what's going on with Joshua's health, but never a post about how much we have to be grateful for, specifically in regard to his special needs.  So this Thanksgiving week, here is a list of the ways we've been cared for, both by other people and providentially:

Going through 12 surgeries, half of which were in-patient with a PICU stay, Joshua has experienced no serious infections, no complications, and no bad reactions to anesthesia.

Dozens (maybe hundreds?) of people have helped us care for him - doctors and nurses and other health care professionals; PTs and OTs and STs.  And (almost) without exception, they have been great and done such a good job!

We had access to a great local children's hospital in CHKD while we lived in Virginia.

Church and friend support - people have brought us meals (once in the hospital, on Thanksgiving Day 2011), loaned us cars for the month, watched our dogs, prayed for us, sent us care packages at the Ronald McDonald House, called, texted, emailed, and Facebooked their support.  We have been so surrounded by love and support, especially from our churches.  

Joshua has attended 3 public schools and at each one, the teachers and therapists have been so good at their jobs and truly cared about Josh.  

Several things with health insurance:  we were blessed to have great health insurance when Josh was born and ran up his biggest hospital bill; Obamacare allowed us to move around and for Kenny to pursue new job opportunities without worrying about Joshua's pre-existing condition; and moving back to Nevada has allowed us to access Medicaid as a secondary insurance, which will cover private feeding therapy.  

Our extended family on both sides of the family has been very supportive and actively involved in Joshua's care, even when he was on the feeding tube and oxygen.  

Kenny and I both had good maternity and paternity leave policies at work, allowing us to stay with Joshua while he was in Salt Lake City.  

We were blessed that Josh was born at this time and place in history, when there are the right medical interventions to keep him alive and thriving.  

Considering the odds with his particular deletion, we are very blessed that he did not have a serious heart condition requiring heart surgery.  Although we don't know what the future holds, we are blessed that he wasn't more seriously impacted by his chromosome deletion in a whole host of ways.  

With developmental delays, there's extra joy and celebration when your child reaches a new (and sometimes hard fought) milestone.

Kenny and I have been on the same page regarding Joshua's medical care.

The Ronald McDonald House allowed us to have a comfortable and affordable place to stay, with home cooked meals provided each night, while Joshua was in the hospital out of town.  

I've made new friendships with other parents going through similar things.  

Our locations at different points in Joshua's life have been providentially helpful:  being born in Reno meant that he had access to a jaw distraction in Salt Lake City rather than getting a tracheostomy like he would have in certain other parts of the country; moving from the mountains down to sea level Virginia meant that he was able to go off supplemental oxygen, and later that we were able to get genetic testing done; and then moving back from tropical Virginia to dessert Reno meant that Josh's problems with asthma and allergies decreased substantially.

Tube weaning story

[Note to any blog readers who stumble upon this post:  this was written for a different website and posted here for convenience.  But you are welcome to read it!]

My son Josh was born with Pierre Robin Sequence (PRS) and a rare chromosome disorder called 4Q deletion syndrome.  Children born with PRS have a recessed jaw and a cleft palate, which causes trouble with both breathing and eating.  Children with 4Q deletions often have feeding and swallowing difficulties as well.  Josh started using an NG tube on the day he was born, and he had a Mic-Key G-button placed at 4 months.  Although he was able to start tasting food as an infant, he was almost exclusively tube fed for his first 18 months, while he underwent a series of craniofacial surgeries that made it safer and easier for him to eat.

After he finished the surgeries and passed a swallow study, his pediatrician recommended that we immediately start an aggressive tube weaning program (cutting the number and volume of daily tube feeds he received by a third), which she hoped would kick-start his oral eating by making him feel hungry.  We tried that for a month, but his oral eating did not take off as hoped, and instead he just lost weight.  At that point, we realized that he still had some weakness with chewing and swallowing, as well as a significant oral aversion to almost all foods.  We started him in feeding therapy with an occupational therapist, we increased his tube feeds back up to previous levels, and we let him work on oral eating at a pace that was comfortable for him.  Every 3 months, we made a list of everything he ate orally for a week, and then we would check in with a nutritionist to see how he was doing with calories and nutrition and decide whether we could decrease the volume of tube feeds.  (Just to be clear, we were not waiting for him to get to the point where he ate a perfectly balanced diet of all the most nutritious table foods - his diet was and still is extremely limited, mostly pureed / smooth / easy foods, and was never the table food I prepared for the rest of the family.  His nutritionist understood the limitations and was not looking for perfection, but she helped us make sure that he wasn't experiencing any serious nutritional deficiencies from his limited diet.)

He made progress very slowly, and sometimes (often?) it felt like we would never get to the point of tube weaning.  There were many days where I felt discouraged about the slowness of the process - even though I know each child goes at their own pace, it sometimes felt like we were stuck in a permanent rut.  But we were so grateful to have the feeding tube, so that he could stay healthy and continue growing and developing while we found the oral eating approach that would work for him.

Josh's stoma2 months after we took out the G-button.

The tube weaning process took a few years, but eventually Josh increased his daily calorie intake enough that we were able to stop using his G-button, and we found the combination of foods that he was able to eat, willing to tolerate, and that would provide him a good nutritional balance.  We still use supplements, high-calorie nutritional drinks, and multi-vitamins to round out his limited diet.  The doctors decided to keep Josh's G-button in for a full year after he stopped using it to make sure that he would continue to gain weight, take his medicines, and continue to orally eat as we made some big changes (our family moved across the country during this process).

Our GI doctor gave permission for us to take out the G-button around Joshua's 5th birthday.  We took the button out at home, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).  We covered his stoma with gauze and medical tape for the first week, but it stopped leaking after the first few hours.  Josh did great with the button removal!  We thought that it might be really hard for him to see it go, since he had it in place for his whole life and we all treated it like a part of his body, like a second belly button.  But I think it helped that he had some control in the process (he helped us take the button out for the final time) and that we had a celebration (so he understood that it was a positive change).  We had an appointment with our pediatric surgeon a month later, and the surgeon said that he didn't need it surgically closed since the stoma stopped leaking on its own.

To any of you who are weaning your super tubie, please don't be discouraged if it takes a long time, and especially don't be discouraged if it takes longer than your doctors think it should.  Our doctors seemed to be mystified that Josh couldn't eat 100% orally the minute he passed his swallow study.  But in connecting with other tubie families, I've learned that every child really is different in how they wean - they all have different medical and developmental needs, not to mention different personalities!  You know your kid best, and for many kids, letting them take their time with the tube weaning process is the best (and only) thing you can do.

Thankfulness Post Year 3: On the Lighter Side

This is my third year doing a thankfulness-themed post.  The last two years, I tried to make my posts more "serious" (Gratitude Year 1, Gratitude Year 2) -I wrote in part about how thankfulness doesn't just need to be about the things that make us happy.  But sometimes, thankfulness is exactly about the things that make us happy!  So this year, I'm thankful for those people, places, and things that bring entertainment, happiness, and beauty into our lives by their existence.  And it's done in list and countdown form, because I am thankful for those blog formats :).  Please add your favorites in any of these categories (or make up your own) in the comments!  I am thankful for:

6: Excellent workplace-themed TV shows available on streaming:

• West Wing - on Netflix, about the White House
• House - on Netflix, about doctors
• Mad Men - on Netflix, about advertisers
• Breaking Bad - on Netflix, about drug dealers (this counts as a workplace theme, right?)
• The Good Wife - on Amazon, about lawyers and politicians
• Newsroom - on Amazon, about journalists

5:  Songs that are easy like Sunday morning:

• Butterfly - Mason Jennings
• Can't Take My Eyes Off of You - Lauryn Hill
• Banana Pancakes - Jack Johnson
• Where is the Love - Black Eyed Peas and Justin Timberlake
• I'm in a Hurry (and don't know why) - Alabama

Mad Hatter desserts

4: Great coffeeshops:

• Brewed Awakenings - This was my go-to coffeeshop during college in Providence, RI.  My roommate Judy and I spent countless hours in this place.  Drink recommendation:  Cookie Monster.
• The Mill - This coffeeshop in Lincoln, NE has been my hometown coffee destination through so many stages -- in high school I went here when I wanted to feel grown up; now I go here when I want to feel young.
• Milagros - I spent a year living in Alamosa, CO (near the Great Sand Dunes) and this lovely coffeeshop was my home away from home.   They frequently hosts community events and their proceeds benefit the local homeless shelter.
• Mad Hatter - This is one of many great coffeeshops in Durham, NC that I frequented during law school.  Mad Hatter gets the shout out because I have some nice memories of meeting Kenny there, and also because look at those cakes!

3:  Favorite sporting events:

Olympic triple jump

• March Madness - because in any given NCAA tournament game in which Duke plays, there is a 75% chance that Duke will win. 
• College football - So much emotion is packed into this sport at this level of play.  The 2015 Nebraska Huskers have dramatically illustrated the thrill of victory and the agony of defeat.  
• Summer Olympics - One of the few opportunities to see triple jump on broadcast television.  (Or whatever your unusual warm weather sport of choice is.)  

2:  Christian woman Facebook personalities / bloggers who are funny and nice -

• Jamie the Very Worst Missionary - one of my favorite blogs by her is #blessed
• Jen Hatmaker - one of my favorite blogs by her is yeses and nos

1:  Lake Tahoe.  (Does this need an explanation?  No.  It does not.)

Life Rhythms and Anglicanism

One of my favorite parts of caring for young children is how your life takes on a certain rhythm.  There's the daily rhythm of naps and snacks and playtime, and it can start to feel like Groundhog's Day because every day is so much the same - except that the kids are going through seismic changes in the first few years and the routines and dependable rhythms can be very reassuring (to both kid and adult) as you transition through constant change.

Then there's the seasonal rhythm, where so much of what you do with kids is tied to the time of year - picnics in the spring, sandcastles in the summer, pumpkin patches in the fall, snowmen in the winter.  Every holiday, every birthday, every day of celebration is a big deal.  (When I think back to my own childhood, so many of my favorite memories are tied to these seasonal events - watching the Big Bang Boom firework show over Skyview Lake in the summer; going to Husker football games in the fall; sledding precariously down the hill at Mahoney State Park in the winter; dyeing Easter eggs at my Grandma's house in the spring.)

As adults, we necessarily lose some of this focus on the daily and yearly rhythms because there's so much to squeeze into the day however you can - work, household chores, caring for others, fitness, etc. - but I think people still find ways to recognize the seasonal rhythms and you see it all the time.  Some examples:  if people are posting daily Facebook statuses about what they are thankful for, what month is it?  If every single product in the grocery store comes in a pumpkin spice version, what season is it?

I think we love the seasons and seasonal traditions so much because we are built to live our life in a series of rhythms (daily, weekly, yearly, and the different seasons of life).  And now I'm finally going to connect all this "rhythm" talk to the title of the post - Anglicanism.  I attended an Anglican church for awhile in Virginia, and learned that it's a great denomination for people who are Protestant and looking for a liturgical church with a deep and rich history.  One of the most important distinctives of Anglicans is their use of The Book of Common Prayer*, which provides:

• Daily prayers:  There are morning, noon time, and evening prayers.  You can pray some or all of these, and you can pray them individually or with a group.  
• Seasonal prayers:  There are special prayers for church holy days (such as Easter, Christmas, etc.) and also for secular holidays (like Independence Day).  These give you beautiful, deeply thought out words to pray to commemorate the annual events of the season.  
• Prayers to honor special occasions:  There are prayers for the birth of a new child, marriage, sickness, the loss of a loved one -- all the occasions that are the most important parts of life, and where it's sometimes hard to find exactly the right words to try to match the importance of the event taking place.  
• (There's a lot of other kinds of prayer contained in the book, but I am beyond unqualified to give an exhaustive list. ) 

The Anglican church also observes the church calendar very faithfully, and so each year you have somber / contemplative times (like Advent and Lent) and celebratory times (like Easter, which it turns out is more than just the one day when the bunny shows up).  There is an elaborate celebration of Holy Week.  There is recognition of days that I had never paid much attention to before, such as All Saint's Day.  And there is the acknowledgement that, even with all the special days and special seasons, most of the church calendar (and most of our lives) are lived in "Ordinary Time".

The predictable rhythm of spending a few minutes each day in The Book of Common Prayer can provide great stability and reassurance in the middle of the ups and downs of life.  And the seasonal rhythms of the church calendar remind you to honor life's ups and downs - to celebrate during the good times, to mourn during the hard times.

One other thing I absolutely love about the Book of Common Prayer is that it gives you good direction in how to pray.  Growing up, I was taught that prayer should consist of  Adoration, Confession, Thanksgiving, and Supplication.  It's very easy to miss a LOT of things in every single one of these categories, as we tend to make our prayers all about us rather than about God.  The Book of Common Prayer can be a big help in deepening and broadening your prayer life.


*I wrote in my Resolutions blog post that I planned to use the Book of Common Prayer regularly this year (which is a resolution I've mostly stuck to, unlike some of the others) - this post explains why.

Josh age 5 health update

I haven't given a Joshua health update in awhile, and the reason is:  he's doing great!  Since moving to Reno, we haven't had any sickness, he's been able to drop a few meds, and he really likes his new preschool / teacher / therapists.  He's adjusting to all our life changes well and he's getting along well with cousins and other friends.  Honestly, this move (both in general and for Josh in particular) is going better than I dared to hope it would.  This blog post has some recent updates at the top and then a more overview type update below.

Recent Updates:

• We took his G-button out last month and it closed in less than 4 hours - isn't the human body amazing?!  This is a great outcome.  Also, he is handling it well psychologically - he doesn't seem to be freaked out that it's gone, he's eating and drinking fine, etc.
• The move to Reno has been great for Joshua's seasonal allergies / asthma, which were getting so bad in Virginia that we weren't able to control them even with a mix of 6 meds, and the next step would have been seeing an allergist.  Because Reno is so dry, we've been able to drop about half those meds and manage things much better, which is a positive quality of life improvement for J.  
• I was a little worried how the school transfer was going to go, since Nevada is a low tax state (great when you're the tax payer, less great when you need government services).  Josh's new school has been great, and I want to give a special shout out to the principal, who seems to approach IEP meetings with the attitude of "what does this kid need to succeed and what can I do to help him get there", rather than starting with the attitude that there are limited resources and only the most dire situations will be reason to loosen the purse strings.  I don't know how she manages the money side of things, but i so appreciate that it feels like we're working together.  
• Our "new" doctors in Reno are actually a mix of mostly his old providers (who are encouraged at how well he's doing now) and a couple new (so far, so good).  The new docs often want to do their own tests for their records (such as hearing tests, VEEG, etc.), so it's taking some extra time and energy to get through this most recent round of doctor visits.  There are a few docs we will eventually need to see in either Vegas, Salt Lake City, or northern California, but fortunately those appointments should occur less than one a year.   
• Josh has a minor urology surgery coming up next week - it's called an inguinal hernia repair.  It's outpatient but under general anesthesia - we would love prayers for no complications and a quick and easy recovery.

Overview Update:
It's got to be a little confusing when I write about how great Josh is doing, or for those of you who see him at church and playdates and family get togethers and in many ways he seems like a "normal" (as in medically and developmentally typical) kid -- but then I also do tons of posts about doctor visits, medical stuff, IEPs, and therapies.  One day he's tearing through the maze at the pumpkin patch, and the next day we're having our Katie Beckett home visit.

So which is it - is he doing great or does he still have a lot going on?

The anwer is:  it's both, at the same time.  (I think many parents of kids with mild to medium affect chromosome disorders would agree with this.)  His scariest and most complicated health issues were all caused by birth defects, and those have been surgically repaired.  His life largely consists of enjoying regular childhood activities like going to the park, playing with friends, etc.  Thanks to the grace of God, really good care from teams of doctors and therapists, and medical interventions like oxygen and the feeding tube and all the surgeries, he's doing really well now.  And while we're very grateful that he is where he is, we still depend on regular help from the doctors and therapists to keep him doing as well as he is.

Why does he still go to doctors so often?

• For the known - Medically, he's got a lot of different things going on.  They are all pretty mild and well managed, thankfully.  We haven't had a hospital admission or ER visit or even so much as a school sick day for several months.  But to keep him healthy, we're checking in with 7 doctors, we're administering medicines and supplements throughout the day, and we're keeping a running list of anything going wrong.  
• For interactions when multiple systems are affected - There are two things to track when lots of systems are affected:
• Figuring out the problem - We notice a problem and have to consult multiple doctors and therapists to figure out what's going on and whether we can fix it.  Often it's more than one thing and nobody's sure exactly what to do, so we try different things until something works or he grows out of it.  (Some examples of this:  getting off the G-tube; falling / balance problems for years when he was learning to walk; looking sideways out of his eyes; severe monthly nausea attacks.)
•  Domino effect - If one problem develops, it can set off a chain of other problems, so doctors are more proactive when Josh gets sick than when medically typical kids get sick.  One example of this -- last year I took both Josh and Zoey in for a sick visit because they both had cough and cold.  It was one of those borderline sicknesses where it's bad enough that you want to get them checked just in case, but you know the doctor is probably not going to do anything.  For Zoey, who was the sicker of the two, that's exactly what happened - they checked her over for 10 seconds and said to call back the next week if she was still sick.  For Josh, presenting with the exact same symptoms of cough and cold, they gave him a nebulizer breathing treatment in the office, a steroid, prescribed an anti-nausea med and a high dose antibiotic, and made a change to his G-tube feeds.  He doesn't get sick too often these days, and he's not nearly as medically fragile as he used to be, but when he does get sick it's just treated differently.  
• For the unknown - With a chromosome disorder, we can expect new health issues to arise more often than for medically typical kids, so we need to do well checks with specialists more often to watch for certain things.  (This is the main reason we currently see neurology and ophthalmology.)

And why all the therapies?

Developmentally, he seems to eventually hit every milestone, but it usually takes extra help (from therapists), extra practice (with us), and just extra time.  Depending on what the skill is and how long it takes to master as compared to normal, this is sometimes a big deal and sometimes a small deal.  (Or, as is often the case, it feels like a big deal when you don't know if / when he's going to master a skill, and then once you see he's going to get it, it instantly turns into a small deal.)  Right now, his skill levels are all over the place -- there's some areas where he's very close to age level (academic skills like knowing his letters, gross motor skills), there's others where there's a significant delay (self-care, fine motor), and then others where it's a medium delay and it's somewhat context specific (speech, social skills).  (And if you're wondering how I know where he's at with all this stuff - it is unreal how often special needs kids get evaluated.  I could probably give you percentiles and paperwork for where he was at in every developmental area for every quarter of his life, starting at birth.)

This part of his care has gotten a lot easier for me now that he's school age and most of his therapies take place at school, but I still spend a chunk of my time communicating with teachers and therapists, trying to figure out if there are toys or activities or therapies or IEP goals that we could add to be helping him more, and figuring out our public and private insurance options to help pay for private therapies.  I wrote awhile back about how important therapists are, and I still can't say enough about how valuable the work of PTs, SLPs, and OTs is.

I write all of this out to give you a better picture of where we are and what Josh's life is like.  As I said above, I think this is a pretty typical situation for kids with mild to medium affect chromosome disorders - the details would be different for every kid, but this is the idea.

My Thoughts on "Daring Greatly"

Lately, I've been looking for ways to be more instrospective in understanding what's going on with my emotions, honest in communicating these things to my nearest and dearest, and courageous in finding ways to live out my ideas and desires.  Or, to put it in popular culture speak, i want to be more authentic.  Or, to put it in Brene Brown speak, more vulnerable and whole hearted.

Why do I want this?  Two things.  First, I think honesty leads to deeper and better relationships (in friendship, family, marriage - any important relationship), and who doesn't want that?  Second, I'm (possibly) at the cusp of a life change, as my kids rapidly approach school age, where I need to think about what I'm going to do with all the new hours of time - back to work, volunteering, working on other projects -- and I would like to be thinking about that from a place of honesty and whole heartedness.

This amazing quote is the inspiration for the title of the book.

One of the things I've done to learn more about how to achieve these goals is to read Brene Brown's wildly popular book, "Dare Greatly".  I usually steer clear of self-help books (for reasons explained below), but every once in awhile a book comes along that is so widely embraced by culture that you want to read it just to see what the big deal is.  Plus, it addresses all the stuff I just wrote about in the first two paragraphs.

I agree with the vast majority of "Daring Greatly".  I think Brene Brown is absolutely right that the big things holding us back from showing our true selves are shame and fear; that if we want to learn to be vulnerable and honest, and to produce things (like art, writing, a new business venture) that people might attack, we need to place our self worth somewhere other than what people think of us.  I think she's right that you need to have gratitude to experience joy.  I think she's right about a whole host of things, and this is why so many people love her book.

But for me, there's one big piece missing in the book.  Brene Brown's suggestion for where to get your self worth from is to believe that "I am enough."  This ties to my problem with self-help books in general:  they nail a problem, but then give a sort of fuzzy solution.  For example, this idea that "i am enough".  Brene Brown makes an excellent, compelling argument that so much in our culture makes us feel like we're not enough, that feeling like we're not enough steals our happiness, and that if we could just believe that we are enough without attaching our self worth to our abilities / accomplishments / other people's views of us, then it would allow us to dare greatly and live whole-heartedly.  The problem is, why should I believe that I'm enough?

There are a number of different reasons you could believe that you're enough, some philosophically stronger than others, but the Christian faith addresses these same things and gives reasons outside of yourself that offer this same freedom that Brene Brown is saying is the key to joy.  The difference is, in Christianity, you look to Jesus for your self worth rather than yourself.  If we believe that we are fully, forever forgiven and justified for every bad thing we have done and every bad part of our selves, and that we've been adopted and embraced into God's family -- that offers exactly the sort of freedom and joy and chance at vulnerable and whole hearted living that Brene Brown talks about.  One one hand, it's similar to the "Dare Greatly" idea, because it's all about getting rid of our shame and living a life not tied to our accomplishments and others' opinions.  But on the other hand, it's totally different, because our worth rests completely outside of ourself.  This is good news!

I imagine that some people who read this might disagree with me, as it seems like I'm one of the very very few people who have read the book and didn't love every single thing about it.  So in the spirit of both Daring Greatly and Christian freedom, please feel free to give me your opinion about the book, especially about the "I am enough" stuff.

{Post script:  Even though I just wrote a blog post about how i'm trying to increase "authentic living", this change is aimed at real life relationships, not my Internet persona - so this blog is going to stay the same.  One of the dilemmas of keeping a blog is balancing transparency with the privacy / protection of those you love.  It can be a real gift when people open up and share the messy, difficult parts of their lives; but it's hard (for me) to figure out how to do that in a way that is respectful and loving towards those who are walking through those experiences with you.  So I try not to talk in detail about my bad days on the Internet.  I am going to stick with this practice, but let me just say, in a very general way:  My life is not perfect.  I fail at being the ideal parent and spouse every day,  my house is never up to Pinterest standards in any way, my kids misbehave, and we have plenty of moments around here of frustration and boredom and messiness in every sense of the word.  I take it for granted that it's commonly understood that *everyone* has bad days, and also that (most) everyone tends to present their highlight reel on the Internet rather than laying out the details of their bad days.  But please know that bad days happen to me, and to everyone else in the history of the world.}

The Top 5 Benefit of Children's Hospitals from a Parent's Perspective

Children's hospitals are a popular cause to support, whether it's rounding up your change at the grocery store or writing a six figure check.  (Or a pro-athlete photo op?  But I digress.)  If you're anything like I was six years ago -- meaning, someone who never had a reason to spend time in a children's hospital - you have a generally warm and fuzzy feeling about children's hospitals, but probably have never stopped to think about why they exist, or what benefit they provide that is any different from a regular hospital.  So for those who are curious, I am writing a top 5 post about the benefits of a children's hospital from the perspective of a special needs parent:

1.  Expertise - Joshua's two main diagnoses (4q deletion syndrome and Pierre Robin Sequence) are extremely rare - when we tell them to residents or new doctors, the docs often whip out their Smart phones to give themselves a quick refresher.  For kids with rare conditions or complicated health needs, it is better to be at the place that is a magnet (often for hundreds of miles around) for other kids with these same complicated health needs, because then the doctors will have a much better idea of what's going on and what to do for you.  When Josh was born, the Reno docs decided to fly Josh 500 miles away to a children's hospital for this very reason.  On vacation, when we have occasion to visit an ER or Urgent Care, they almost always ask me why I didn't just take him to the Children's hospital - even when there isn't a children's hospital in the same town.  Both parents and doctors feel better having medically complex kids cared for by pediatric experts, and these docs are usually housed at children's hospitals.

2.  Electonic Doctor note sharing / Teams - When your child has multiple specialist doctors, it really helps if they can see each other's notes and talk face to face about the best way to handle a situation.  For example, it was helpful to have our ENT (who interpreted sleep study results) talk directly to the craniofacial surgeon (who repaired Josh's cleft palate) about how the palate repair would affect Josh's ability to breathe.  It was helpful when multiple surgeries needed to be done around the same time and the doctors could coordinate so we just had one anesthesia and one hospitalization.  When your child's pediatric specialists are not affiliated with a children's hospital, then they often rely on the parents to communicate what's going on with the child - and while special needs parents often become extremely knowledgeable about their child's condition and do an adequate job of filling the different doctors in on developments, we just can't communicate things the same way as two doctors talking directly to each other.

3.  Decor / Child Life -  For Josh, it makes a huge, positive difference in his anxiety level when as much as possible of the hospital sensory experience is designed to be child friendly and soothing.  When the lobby is decorated in child friendly colors, there are cartoon animals painted on the walls in the exam room, there are volunteers playing live music out in the corridor, and there is a train table in the pre-op waiting room.  When the TVs for admitted patients have multiple cartoon channels and the Child Life department has extensive toys and books available for kids of all ages and abilities.  Similarly, it makes a big difference when doctors are willing to take a minute to help make the kid comfortable - introduce themself, let them touch the stethoscope, explain what will happen next - before they dive into the exam.  And it seems like prioritizing the comfort of the kid over absolute maximum efficiency happens more often at children's hospitals than elsewhere.

4.  Convenience - Josh currently sees 7 doctors at least once per year (for those who are wondering:  ophthalmologist, neurologist, ENT, plastic surgeon, GI, pulmonologist, and pediatrician), and a few others from time to time as things come up (geneticist, orthopedist, dermatologist, urologist, developmental pediatrician, and pediatric surgeon).  This means we're going to the doctor dozens of times per year just for well checks.  If all the doctors are housed under the same roof of a children's hospital, I learn pretty quickly where I'm going and how long it will take to get there and what the parking situation is and how long to expect to wait and whether they have a coffee shop, etc.  If the practices are scattered all over town with different staffs and situations in each place, I have to spend a lot of extra time figuring out logistics and leaving buffer time (in case this is the office that runs right on time rather than consistenly an hour behind).

5.  Billing - That long list of doctors above means we run up a bill pretty quickly each time our health insurance year starts over, and children's hospitals do two things that are extremely helpful with this.  First, they consolidate all the expenses into two big bills - one from the hospital itself and one from the doctor's group - this simplifies (see #4) and it also gives them a good picture of your overall health expenses.  Second, they provide extremely generous, zero interest payment plans as you pay back this consolidated bill.  They are not non-profit in name only - they really do prioritize caring for kids and they don't want financial hardship to be a barrier to kids getting the care they need.  (At least that has been our experience with CHKD in Virginia.)

Those are my top 5.  I recognize that some of these are more compelling than others -- the expertise thing matters a whole lot more than the convenience thing -- but at the end of the day, they all matter, so they all make the list.  Friends, what would you add?

G-Button out!

It's official:  Joshua's G-button is out!

A recent picture of Josh that shows his G-button, at Lake Tahoe.  

We saw his GI doctor yesterday and got the "all clear".  The orginial plan was for me to take it out at home last night, where he could be comfortable, but unfortunately we had a button malfunction and I couldn't get it out.  It's kind of funny to spend 5 years doing everything you can to keep the button in, and then when you're finally ready to take it out, it won't budge.  (It's like ray-ee-ain, on your wedding day.)  So there was some frustration and frantic message boarding on my part (trying to figure out what was wrong with the button), and then resignation that we would need to go back in to the doctor's office.  And then, probably thanks to all my fiddling with it the night before, the balloon on the button burst and it came out on its own!  And bonus:  Josh thought he did it, so he's feeling very pleased about the whole situation.  (I thought the button coming out and not being replaced by a new one was going to be a hard moment for him.) Then, as planned, a gauze bandage went on, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).

Celebration cupcake.

I've done some posts in the past about Joshua's feeding tube, including why he has a feeding tube, what I wish i would've known about the feeding tube from the beginning, how his eating is still very limited, and the excitement when we first found out that we could stop using the feeding tube.  These posts summarize how I feel about the whole situation:  grateful that Josh had the feeding tube while he needed it, and ecstatic that he got to the point where he no longer needed it.  Today I just want to post some pictures to memorialize the whole experience.

Joshua's first week, hooked up to all the machines in the NICU in Salt Lake City.

Christmas baby!  2 months old.  I got to change the NG tube while staying in a VRBO with the family in San Diego.

Love those little baby smiles.  

Big, beautiful eyes.  He still makes this expression with his mouth when he's unsure about something.  

We were living in Virginia Beach for most of Joshua's early life.  60 ML tube feeding syringes make excellent sand toys.  (This is supposed to be the Nebraska state capitol.)

First day post-op after getting a G-button placed, age 4 months.  No more tube coming out of the nose!

Kenny giving Josh a bath around age 6 months.  Plenty of baby fat, thanks to the feeding tube.

Josh was not orally eating by his first birthday, so mom overcompensated by getting him the biggest smash cupcake in all the land to get his hands and face dirty.  

First birthday bath following first birthday smash cupcake.  This is one of my very favorite pics of Joshua.

Lots of doctors visits, tests, and procedures as part of all of this.  Here is Joshua being a good sport during one of his nine sleep studies.

North Carolina, c'mon and raise up, take your shirt off, twist it round your head, spin it like a helicopter.

Lots of new pretend play ideas, too, including being a doctor...

...tube feeding stuffed animals (this bear had his own Mic-Key button - thanks Judy Corliss!)...

...and doing feeding therapy on the stuffed shark..

Josh proudly showing off his G-button, age 2.

All of us got very comfortable doing regular life activities with the button, including the important evening activity of wrestling with dad.  

Eating is still a challenge, but for the last year, Josh has been able to to eat (and drink) enough to keep growing and stay healthy, so now we get to take the tube out!

I do have 2 prayers requests:
1)  For healing of the stoma (that's the empty hole where the G-button used to be) - that there won't be infections, that if he needs surgery (he probably will) that it will be a smooth and uncomplicated process, etc.
2)  For Josh - he's handling it super well right now, but I think there might be some ups and downs this weekend.  Imagine telling a 4 year old that you're taking out their belly button - this is what it feels like to him.  He's had it for as long as he can remember and it seems to him like a body part.  Prayers for his adjustment to no G-button.

Thank you all for prayers and encouragement along the way.  I'll probably do another blog in a few weeks about how it's all going - but for today, signing off and celebrating with cupcakes!