Joshua's Sideways Look

Joshua saw the ophthalmologist on Friday to get a general check-up for 4Q related concerns and to investigate why he frequently looks out the side of his eyes.  Joshua does not have any major eye problems, thankfully, but the doctor did diagnose him with astigmatism, so as of this week, he gets to start wearing glasses (pictured below).  The hope is that glasses will help him look at things at a distance head-on, fall less often, have a better sense of depth perception, and just generally be more comfortable.  He is not a huge fan of the glasses and it's unclear whether they are helping much, so we will see if this is a lasting change.  

[Note added later:  Joshua saw his neurologist in October 2015, and the neurologist believes that he has oculomotor apraxia.  This means that it's sometimes easier for Joshua's brain to process what he sees if he tilts his head or views it by looking sideways (you can see him doing this in all the pictures below).  For now, nothing needs to be done to "treat" this condition - he doesn't need additional therapy or surgery - we should just let him keep looking sideways / head tilting since that seems to be most comfortable.]

   In any case, the main reason I did a whole blog post to announce that Joshua is getting glasses is because I wanted an excuse to post a gallery of some of the pictures we have of Joshua doing his most classic expression - the sideways look.  Here they are:

With stuffed Buster, checking out real Buster on the couch.  

At Autumn's 2014 summer tea party - here he's playing hide and seek, "hiding" behind the plant.  Photo credit to Hope Hepner.

At the Virginia Beach farmer's market but getting in touch with his Nebraska roots.

At Scheel's in Reno (which is allegedly the world's largest sports store), checking out the bridge shaped aquarium.

In Lincoln for Christmas 2011.

At California Pizza Kitchen in Virginia Beach.  Photo credit to Judy Coleman.

First time playing in the snow, in Lincoln, Christmas 2012.

Second Annual Books-I-Read-Last-Year Post

Here's a picture of all the books I read in 2014.  Last year, I rated them all, but this year I'm switching it up and doing a series of Top 5 lists (below the picture):

Five Books that I'm still thinking about:

1.  The New Jim Crow by Michelle Alexander
2.  Salt Sugar Fat by Michael Moss
3.  Pilgrim at Tinker Creek by Annie Dillard
4.  Wonder by R.J. Palacio
5.  All books in the spiritual formation category (below)

Top Five Novels:
1.  Lila by Marilynne Robinson
2.  Americanah by Chimamanda Ngozi Adichie
3.  Where'd you go, Bernadette by Maria Semple
4.  The Secret History by Donna Tartt
5.  The Children Act by Ian McEwan

Top Five for Spiritual Formation:
1.  Prayer by Tim Keller
2.  Walking with God Through Pain and Suffering by Tim Keller
3.  Surprised by Hope by N.T. Wright
4.  One Thousand Gifts by Ann Voskamp
5.  Seven by Jen Hatmaker

Top Five that Exceeded Expectations:
1.  What I Talk About When I talk About Running by Haruki Murakami
2.  Dad is Fat by Jim Gaffigan
3.  The Rosie Project by Graeme Simsion
4.  Bread and Wine by Shauna Niequist
5.  The No. 1 Ladies Detective Agency by Alexander McCall Smith

Five that you should skip:
1.  Blue Mind
2.  Someone Else's Love Story
3.  The Book of Jonah
4.  Stitches (i LOVE some of Anne Lamott's other books, but this one just did not do it for me)
5.  The Headmaster's Wife
*BONUS* category of book that you should skip:  all potty training books ever written.  They will not help.  

Last year, a few people saw my reading post and asked me how I managed to read so many books.  The short answer is that I probably have more time than many of you since I don't work outside the home and my kids are usually in bed by 8:30 pm.  (For those of you who are in this same stage, I'm not meaning to say that this stage is easy - I'm usually tempted to go to bed at about the same time as my kids - just that this is where I find the time.)  But in the spirit of The Top Five, here are my five tips to fit more reading into your life:

1.  Find good recommenders - whether it's friends or the New York Times or cruising around Barnes and Noble display tables, find reliable sources that can help you pick out good books.  Text yourself immediately when you see a good book so you can remember for later.  Keep a list of books you want to read.  Goodreads.com is a great place to do this.  There is nothing that motivates reading like having a book on your nightstand that you actually want to read.
2.  Use the library's online hold system.  It saves money, it keeps you stocked with books you want to read, and it gives you a 3 week deadline to finish the book.
3.  Keep a book with you all the time.  There are all these moments of the day that you spend waiting:  at the doctor's office, when your gas tank is filling up, when you get to the school five minutes early - these moments are all a good chance to get in a couple minutes of reading.
4.  Switch it up - if you usually read fiction, throw in some non-fiction.  Mix heavy reads with light reads.  Try something in a genre you would usually not try.  I feel like this energizes all my reading, both in and out of my comfort zone.
5.  Join a book club - there's nothing like monthly peer pressure to help you get through some additional books.  I do a virtual book club with my mom and sister and it's been really fun for us, and also a good way to try out books that I would otherwise never think to read.  

What books did you read in the last year that you would recommend (or recommend skipping)?

Resolutions

This is a post about New Year's resolutions.  It's kind of funny to be writing a post about resolutions a whole week into the new year, when some new resolutions have already been dropped, but, in the words of my former landlord, "It is what it is."  Some people don't like the idea of resolutions because they are so often dropped and because efforts towards positive change should be happening continually, not just once a year.  But for me, it's helpful to have an annual occasion to think about goal setting, or i would very easily forget to think about it at all.  Here are a few things I think about when forming resolutions:

• Keep it manageable.  I think this is the very biggest thing for making resolutions that will stick.  It's tempting to set lofty, impressive goals.  For example, last year I really wanted to get back into the habit of running, and I thought (*briefly*) about resolving to run a marathon, because  how awesome would it be to post that finish line picture on Facebook?  But starting from a routine where I was running 0 miles per week, that was an unrealistic goal.  I needed something much more modest, and much less Facebook worthy, if I actually wanted to accomplish it.  
• Think of broad categories in which you want to see self-improvement.  For me, 3 categories that I want to work on almost every year are health and fitness, spirituality, and learning.  So I try to choose a resolution in each category to keep things well rounded and avoid burn out in any one area.  
• Keep it specific and measurable.  This means saying exactly what you're going to do and how often you're going to do it.  So, instead of saying "eat healthy" or even "eat more vegetables", I would say "eat a salad containing 4 types of vegetables, 5 times per week".  
• Think about the flow of your year and plan accordingly.  There are some times of year where it's much harder to get things done, and other times where you have extra time and you can make up lost ground.  For our family, January tends to be an unusual month - we are traveling and out of routine, the kids are often sick, sometimes there are snow days - so I am almost always behind on resolutions by the end of the month and it can be very tempting to quit.  But if I go into it knowing that January is a hard month and I'm likely to be behind at first but will be able to catch up in the next several months, then it's not so discouraging.  The corresponding point is that when I get to months where I have extra time and energy, I have to use those well to make the whole thing work.  

And without further pontificating, here are my resolutions & results from 2014 and my resolutions for 2015:

2014:

1) Goal:  Run 100 times in the year.
 Result:  It was slow and painful going at first, but I accomplished this goal by September and managed to turn running back into a normal part of my routine.

2) Goal:  Read through the Bible.
Result:  This one also proceeded in fits and starts - but I got it done (finishing on Dec. 31 around 5 pm) and turned Bible reading back into a regular habit, which I had not done well while the kids were infants.

3) Goal:  Read War and Peace.
Result:  This was a fail.  I chose to try this book because it's supposed to be the greatest novel ever written, and I slogged through 200 painful pages (out of 1000) - but I just couldn't keep going.  This book was not for me.

2015 resolutions:

1) Work on Strength training by completing the pictured program at least once per day, 3 times per week.

2) Use the Book of Common Prayer at least 5 times per week.  I'm not even exactly sure how to use this book, so this will be a pretty experimental thing and I might follow up with another blog post later in the year about why I made this resolution and how it's going.

3) Take a course through Coursera - There are lots of good, free college courses available online, and this year I would like to complete one.  My first choice is to take something related to Joshua (on genetics or child development), but if those aren't available, then I will probably do something in humanities (hopefully related to literature).  If any of you have done Coursera and have specific recommendations, please send them.

I would love to hear your resolutions, or your best tips on making lasting resolutions.  Cheers to 2015!

An Advent Reflection

I've been thinking a lot about Advent this holiday season, and about how experiencing darkness and suffering best prepares you for the hope of Jesus coming.  Don't get me wrong - I enjoy the festivity of the holiday season, including the "frivolous" stuff.  I like driving around looking at Christmas lights, I like when the Christmas drinks appear on the Starbucks menu, I like blasting any Christmas song sung by Mariah Carey, I like a good white elephant Christmas exchange, and I like any excuse to eat excessive amounts of spinach artichoke dip.

But I think it's much more natural to feel sadness this time of year, with the days getting colder and darker.  For people who have lost loved ones or who struggle with depression or who have just had a hard year, the holidays can be an especially tough time.  Others are feeling despair because of the violence and injustice they see in the world.  Others feel loneliness as they don't have dozens of parties to attend and presents to buy.  For me, autumn is a reminder of the time of year when Joshua was born, and it often seems to bring new surgeries or worries or diagnoses - so for me personally, it always seems like a hard and sad time of year.  All these parties and holly jolly music and everyone talking about how it's the most wonderful time of the year (and also the busiest!) can feel very far removed from your reality if you are struggling.

The good news is:  sad feelings are kind of perfect for Advent.  I think those who are feeling sadness this time of year have a much better vantage point from which to understand and appreciate and deeply long for a hope that comes from outside of this dark and broken world.  As I struggle with some of Joshua's stuff, that is beyond what I can help with and beyond what doctors can fix, I feel the need for something outside of this world to come in and bring healing.  I appreciate the hope that came into the world when Jesus was born, and I understand the urgency of the cry, "Come, Lord Jesus."

When everything is comfortable and good...when you don't feel the sadness in your own life or in the world at large...then it can be harder to remember the great hope we receive at Christmas.  So if you're struggling this month, I hope this is an encouragement.  One of the greatest Christmas hymns demonstrates the specific hope that comes to those who know their need (here is just one verse, but the whole song is really geared this way):

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.

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p.s.  Here are a couple good recent articles on Advent:

• What Church History Taught me about Christmas
• Weeping with the Mothers of Bethlehem

Family Updates

Hello, everyone!  This blog post is a mix of short family updates:

It takes a village

First, thanks for all the support since we received Joshua's new genetic diagnosis!  It's such a blessing to know that people care, so thanks to all of you who have reached out.  As we've started to read more about 4Q deletion syndrome, one theme that comes up over and over is how much of a difference early intervention makes.  It's made me feel a wave of gratitude for the "village" of people who have helped us care for Joshua these first four years.  Thank you to the doctors and nurses who gave him so much crucial medical care.  Thank you to the therapists and teachers who have taught him so many important skills (and taught us how to help him).  Thank you to extended family, church families, and friends for surrounding him (and us) with love.  I'm very grateful to all of you!

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Joshua medical stuff 

Josh got an echocardiogram and blood work done earlier this month, and all the tests came back normal, which is great!  His transition off the feeding tube is also going very well.  His favorite foods are peanut butter, cheese, yogurt, and fruit.  He's gained a few pounds since he stopped using the tube this summer and he seems to be healthier than he's ever been (which might just be a coincidence, but in any case, it can't be a bad sign).   He still has the G-button in place for now and the plan is to remove it in March, once we make it through cold & flu season.  I'm glad the doctors have decided to take it slow with removal, because it's given us time to really feel confident that he can continue to gain weight and stay healthy without it.

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The start of our 4Q journey

We have been researching 4Q deletion syndrome, but there is not a lot of information out there, so our best source of information right now is the 4Q parents group on Facebook.  There is also an organization called Unique that registers the families of children with rare chromosome conditions, and then uses this registry to connect families with others whose children have the same condition. We have registered with Unique and made contact with a few other families whose children have similar deletions.  Interestingly, Joshua is the only (*registered*) person in the world with his exact deletion.  Unique operates out of the UK and it looks like most families who are registered live in the eastern United States or western Europe, so it seems very possible that as more and more people get genetic tests and as more geneticists worldwide learn about Unique and encourage their patients to register, we will eventually learn of at least a couple people who are an exact match with Joshua.  But for now, he is literally our precious snowflake.  (This is my attempt to reclaim that phrase and use it for something positive rather than mockery.)

One of the 4Q brochures said that knowing an individual's chromosome make-up is helpful in explaining symptoms in an affected child, but not so helpful in predicting the effects on an individual. This has been true for us - we've definitely had lots of "aha" moments in the last month, as several things make more sense with this diagnosis, but so far it hasn't been super helpful in showing us exactly what Joshua's future will look like.  We know that certain kinds of problems are much more prevalent in the 4Q population, so we will be periodically testing / watching like a hawk for those.  And it seems like with almost every kind of problem, the earlier you catch it and start treating it, the better.  So hopefully the diagnosis will be helpful to us in that way going forward.

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Joshua School Change

We moved to a new house in October, and since Joshua attends preschool through the public school system, he had to change schools in November.  I was pretty resistant to this change because we were SO happy with his last school - his teacher was great, we could see him making progress all the time, and he had a good friend in his class.  Fortunately, the transition to the new school seems to be going well.  His new teacher is very nice and we are continuing to see him make progress.  But mid-year transitions are always hard, so I would appreciate continued  prayers for J to adjust to this new school and to make new friends.

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Zoey Updates

Zoey doesn't get much word space on this blog because, fortunately, her health and development have been pretty typical, but today I'm giving her a virtual appearance.  Zoey has a very lively, mostly happy but always intense personality.  She is talking up a storm and is full of questions.  One of her favorites is, "Where did mommy go, mommy?"  She and Joshua are great buddies and playmates for each other.  Zoey's hair is finally starting to grow longer, so if anyone wants to send tips on [SIMPLE] ways to style toddler girl hair, I would appreciate it!  Right now I can get away with the Justin Bieber look (is that an outdated reference?), but we're going to need a better hair solution soon.
 
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Family holiday plans

We will be staying in Virginia Beach through Christmas Eve, and then we will travel to Nebraska from December 25 - January 6.  This is the first time we've spent most of December in Virginia rather than traveling back to Nebraska or Reno early, so it's nice to participate in some of the holiday festivities in our town of residence.  We are very excited to see you, Nebraskans, and we will be thinking of you on Christmas, Nevadans!