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!

My Second Annual Thankfulness Post

It's Thanksgiving week, which makes it a great time to write a post about thankfulness.  Most of the ideas in this post are suggested by a very interesting Ann Voskamp book that I just read, thanks (pun intended) to the long-distance book club I'm in with my mom and my sister.  (I would recommend this book, as Voskamp is intelligent and spiritually insightful, but with the warning that you will have to get past her HUGELY DISTRACTING writing style.)  Voskamp's thesis is that thankfulness is the key ingredient when it comes to experiencing joy and knowing intimacy with God.  Here are some things her book made me think about:

• Be thankful for the specific, sensory gifts all around you: So often when we think of the things we are thankful for, we only think of things that are big (like our house), or very general (like good health), or most meaningful (like our family).  These are all great things to be thankful for, but they leave out lots of what moment-to-moment life consists of and they don't re-orient us towards an ongoing attitude of thankfulness.  Voskamp encourages us to be really specific in our thankfulness and to notice the small gifts that are around us all the time, and one good way to do this is to notice all the beautiful things that we perceive through our five senses.  So in the morning, I might be thankful for the smell of fresh coffee brewing, the feel of warm socks on my feet, the sound of a bird chirping out the window, the sight of the sun rising, and the taste of sweet syrup on a pumpkin pancake.  This all sounds a little cheesy, but if you make an ongoing effort to really pay attention to these things and to understand them as gifts from God that make your life more beautiful and enjoyable, it really does make a difference.  
• Thankfulness in ordinary tasks.  Voskamp encourages us to connect the mundane tasks of our life to an attitude of thankfulness, and again to be really specific about it.   Examples would look like this:  I'm grateful to be scrubbing out this frying pan because it means i have food to eat; I'm grateful to be out grocery shopping, buying these overpriced applesauce squeezes because it reminds me that Joshua is eating by mouth; I'm grateful to be responding to cries in the middle of the night because it means I have these sweet children and I was given the job to comfort them when they are hurting.  Again, it sounds a little hokey when you read about it, but life is so much about perspective, and this is a helpful way to reorient towards a perspective of thankfulness.
• Be thankful in the midst of trials and suffering.  This is the most difficult one to describe, but it is undoubtedly one of the marks of a mature Christian and a truly grateful person.  Here are two things it does not look like:  1)  "It could be so much worse" (feeling grateful that your life is not as bad as the worst possible scenario), and 2) the gratitude is focused on the good things that you can see coming out of your suffering.  I'm not saying either of these things, particularly the second one, is a wrong way to think...but the end goal is to learn how to be grateful in the midst of suffering, without comparing your situation to others and without needing to see obvious good things coming from the suffering.  I think this article gets at it a little bit.  Another part of it is that trials and suffering help us remember that our hope is not in this world...as a popular K-Love song puts it, "What if my greatest disappointments or the aching of this life is the revealing of a greater thirst this world can't satisfy?"  There is certainly some mystery in this type of thankfulness (how to get there, what it looks like), and I would welcome any commenters who can elaborate on this point.  

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This last thing is not from the Voskamp book, but it's about thankfulness, so I'm tacking it on:

I read Ecclesiastes recently, at the same time as reading the Voskamp book, and for the first time noticed how much Ecclesiastes emphasizes thankfulness.  At different times when I've read Ecclesiastes, I've thought it was confusing, depressing, social-justicey, and keeping it real, but this time the verses on thankfulness really stuck out.  Here's just one example (emphasis added):

"I have seen another evil under the sun, and it weighs heavily on mankind: 2 God gives some people wealth, possessions and honor, so that they lack nothing their hearts desire, but God does not grant them the ability to enjoy them, and strangers enjoy them instead. This is meaningless, a grievous evil.  3 A man may have a hundred children and live many years; yet no matter how long he lives, if he cannot enjoy his prosperity and does not receive proper burial, I say that a stillborn child is better off than he."  Eccl. 6:1-3

So the two things I take away from these verses (and the others in Ecclesiastes like them) are: 

1.  Thankfulness / contentment is a gift from God.
2.  The ability to be thankful (for wealth, success, relationships, etc.) is the really important thing, not how much of the thing you have.

And with that, I am off to do some household chores, which I will attempt to complete gratefully :).  Happy Thanksgiving to all of you!  I hope you have a wonderful holiday weekend!

New diagnosis: 4q deletion syndrome

[Edited to add:  if you arrived on this page searching for information about 4q deletion syndrome, this post will give you better information.]

I wrote last month about how Joshua got tested for chromosomal abnormalities.  The results are in, and it turns out he has 4q deletion syndrome.  (His particular deletion is 32.3 - 35.2.)  For those who would like more information, this link gives a summary of the syndrome.  It is basically a description of all the things we already know about what's going on with Joshua.  (In case there is anyone new to this blog, here is a link to Joshua's story.)  So this is our new "umbrella" diagnosis - it explains why he was born with Pierre Robin Sequence, why he has continuing developmental delays, and why he has an assortment of other minor health issues / unique features.

Here's the good news:

• This doesn't immediately add anything serious to his situation, like a surgery or a bunch of new doctors.  We will have to get a few tests done (echocardiogram and a standard blood panel), but these are things he's had done before, so we know these are very unlikely to reveal serious problems.  
• It's reassuring to get this news at age four rather than at birth because we already know where he stands on a lot of these things.  In particular, we already know that he has developmental delays, but we also know that they are relatively minor, and we've been fortunate to get great help from PTs, OTs, and STs ever since he was in the NICU.  
• We've seen him make great progress in the past year, especially with speech and eating, and there's nothing about this diagnosis that changes all the positive development we've seen him make.  
• This is so obvious it hardly needs to be stated, but:  he's still the boy we know and love, and he's not any different just because we have some new information about his chromosomes.  

Here's what's hard:
I think this is true for every special needs / medically complex parent:   every time it feels like we can just relax, some new thing comes up.  It's a roller coaster.  And this particular diagnosis is a micro and macro part of the roller coaster.  Micro because it's the bump that we are currently facing.  Macro because  the nature of a chromosomal deletion indicates that we will be on this health roller coaster for much longer than anticipated.  Joshua's deletion is very rare (they estimate 1 in 100,000), and research on rare chromosomal conditions is very sparse -- so there is a lot about the future that is a giant question mark.  But there is now an increased possibility that he will face extra struggles throughout his life, especially in terms of learning / intellectual disability.  And that feels pretty overwhelming.  I came across two blogs that were encouraging to me this week, related to all this:  this one, in #3, #10, and #11 talks about some of the lovely things about being a special needs parent, and this one talks about trusting God in the midst of an uncertain future.  We would love prayers for Joshua's long term health, and I would love prayers about trusting God in the midst of this new diagnosis.

Here's the vindication for those of you who use Dr. Google:
We've all heard jokes about people who trusted really lousy information that they got from the Internet.  And on more than one occasion, I have "diagnosed" Joshua using WebMD or Facebook groups, and gone in to our pediatrician to find out I was way off base.  When I call to schedule appointments and I tell doctors that I'm concerned based on something I saw on the Internet, I can almost hear the eyes rolling.  But here's the thing - if your child has a rare medical condition, the Internet (and specifically Facebook support groups with other parents) might be your best source of finding new information, as parents may know more than professionals.  We decided to do genetic testing because of a discussion that came up on the Pierre Robin Sequence Facebook page.  One of the moms sent me the link to a brochure that described 4q deletion syndrome, and it seemed to match a lot of Joshua's distinctive characteristics.  So we got the test done, it turns out he does have 4q deletion syndrome, and the brochure provided to us by the geneticist is the exact same brochure I had read 3 months earlier on Facebook.  Just like with any source, you have to use common sense when determining the reliability of information from the Internet.  But there is a *wealth* of information on the Internet, particularly in networking with other parents, and if your child has a rare condition, this is one of the best ways to get useful information that you can use to advocate on their behalf.

Buying a house!

Exciting news:  Kenny and I just bought a house!  We rented for our first three years in Virginia Beach, and we are both very excited about 1) owning rather than renting and 2) the particular house we bought.  I am also pretty excited that our new zip code is the easy to remember, numerically ordered 23456.  Here are some observations from our recent bout of home shopping (listed in - my favorite - bullet points):

• HGTV effect:  You could really see the influence of shows like House Hunters in people's choices about how to upgrade their homes.  We saw many, many homes with granite countertops and stainless steel appliances where there were glaringly obvious other things that should have been fixed first (like paint the walls, change the carpet, etc.).  And I am not immune to this effect...I would see a house that needed a new roof or something major, but my thoughts would linger on the granite countertops.
• On a related note -- it's so easy to start wishing you were shopping for a fancier house, no matter how high your actual price point is.  This blog post, one of my favorites by anyone ever, is a helpful anecdote to that.  
• Advice to sellers:  If there are easy things to repair or clean up, it is well worth the time to do so before putting your house on the market.  If buyers like the house overall but see things like a weird wire coming out of the wall, or an unflushed toilet, or a hole punched in a closet door (all real examples we saw in the last couple months), it makes you wonder what other problems or dirtiness you're not seeing and casts a bad light on the whole house.  
• Home buying to home owning is like this throwback blog post:  You spend 10-15 minutes previewing a place, and have to decide based on that brief glimpse whether you should make a major financial commitment to it and make it the space where you will live, possibly for decades.  You have no idea in this quick viewing what you will most love and hate about the house.  
• The process can be an emotional rollercoaster:  Getting through offer, counteroffer, home inspection, and closing is a surprisingly nerve-wracking experience.  You have to try to guess the right market price, which is sometimes very close to the list price and sometimes tens of thousands of dollars off.  You have to guess whether the seller is eager to sell quickly and willing to take an aggressive offer or whether they feel like their property is worth the asking price and will be offended and walk away if you make an offer that's too aggressive.  You have to hope that things go well with the home inspection.  And through that process, you have to be ready for the possibility that buying this house will not work out, right when you're most eager to be excited about moving in.  That's why it's so exciting to get to closing day!

We closed on our new house today and we are moving in this weekend.  For those who live in Hampton Roads, we are moving to the Salem area of Virginia Beach, which is pretty close to where we live now.  Unfortunately, Joshua will have to switch to a new preschool as part of the move.  We've heard good things about the new school, but would love prayers for the transition.  Time to go pack some boxes!

Is American Parenting Killing the American Marriage?

I've seen this article -- How American Parenting is Killing the American Marriage -- shared many times on my Facebook feed, and it seemed to resonate with many of my friends (and many of their friends).  I think it's a great discussion piece with some valid points but also some ideas I really disagree with:

Valid points (directly quoted from the article):  

• "Children who are raised to believe that they are the center of the universe have a tough time when their special status erodes as they approach adulthood." 
• "Couples who live entirely child-centric lives can lose touch with one another to the point where they have nothing left to say to one another when the kids leave home."

Important qualifiers that the article does not address:

• You might be totally on board with the idea that family life shouldn't be child-centric, but I don't know how you practically make that work when the kids are young and/or special needs.  They need help with their basic needs all day long, and unless you have the money to hire lots of help, your life is going to revolve around the kids for the first few years.  The author claims that this is not the case in every time and culture, but I would like to see how that works.  
• "Children raised to believe they are the center of the universe" is not so much about how much time and attention you give to a kid, but about the philosophy with which you raise them and how effective you are at teaching them to be mindful and respectful of others.  (This is HARD and I am still figuring this one out.)
• Things that appear to be child-centric might be done just as much for the adults.  For example, I try to avoid making plans during my children's nap time, which appears to be a child-centric practice, but it also makes them less crabby for the rest of the day and helps them fall asleep more easily at night -- which makes my life easier and allows me to spend some time with my husband after the kids have gone to bed.  

Thing on which I think she's flat out wrong:

• That it should be publicly acceptable for you to say that you dislike your kid.  I don't mean that you should see your kid through rose colored glasses and not try to help them work on weak spots, or make excuses for bad behavior rather than correcting, particularly when it's destructive to others - but I mean that everyone else in the whole rest of the world will, at times, give them reasons to hate themselves, and parents should be the two people who offer a safe haven of acceptance and love to their kids.  

On American marriage:

• I think the thing that's killing the American marriage is the idea that the goal of marriage is romantic-comedy-style individual happiness and fulfillment, as opposed to for better or for worse (which is sometimes about each partner's individual happiness, but also about sacrificing, learning to grow together, supporting each other through hard times, and staying loyal during mundane times). Even if the author is right that parenting has turned into a religion and this is hard on marriage, it wouldn't be such a lethal blow if people didn't also have faulty assumptions about what a good marriage should be like.
• I think there are many ways in which American parenting strengthens the American marriage. Kenny and I consider raising our kids to be one of the most important projects of our life.  We've got spiritual goals that are more important (and many overlap with raising our kids); we've got career and life goals that are less important but still big; but raising our kids as well as we can is a major one.  Consequently, when I see Kenny spending time with the kids or doing any of the many other things that make him a good dad, it strengthens my love for him.  

What do you think?  As I said at the beginning, the original article seemed to resonate with many, so I'd be interested to hear any feedback.