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.  

IEP parent

It's that time again!  Once a year, I meet with Joshua's team of therapists and teachers at school to review his Individualized Education Plan (IEP).  An IEP is the paperwork that describes what services Joshua gets from the school district and what goals he will be working on for the upcoming year.

One of the lucky things about my first two jobs is that they provided me with some helpful training for my life as a special needs parent.  In my first job, I learned how to make health insurance appeals.  In my second job, I had a handful of clients in Early Intervention and dozens of clients with IEPs, so I got to learn all about how those systems work before I had to start advocating on behalf of my own child.  (In fact, with Early Intervention, this led to some confusion -- when I called to get Joshua enrolled at age one month, I still had some messages pending for my clients, and the manager called back confused about whether attorney Erin and mom Erin were the same person, and in what capacity I was calling for Joshua.  And her tone totally changed once she realized I was calling for my own child -- you get much friendlier treatment and much greater access when you're the parent rather than the attorney.  But I digress.)

For the clients with IEPs, we sat in on their meetings, reviewed the documents, and were available to help challenge if it came to that (although with my clients I never actually did a due process hearing).  So I am very comfortable with the process itself, although it feels completely different as the parent rather than as one of the service providers.  It's much more emotional and stressful when the discussion involves your own kid and the areas where he is delayed.  And because IEPs read in some parts like legalese and in other parts like a robot spitting out a formula, it can feel like the school district is dealing with your child mechanically rather than thoughtfully, compassionately, and individually.  If I ever do go back to a job where I'm an attorney in IEP meetings, it will be invaluable to have seen what it feels like to be the parent.

In the process of attending IEP meetings, here are the best tips I've learned that apply universally:

1.  You can request your papers ahead of time.  This is helpful for a few reasons:  it lets you read about your child's strengths and weaknesses privately and lets you feel whatever emotions that might bring without an audience; it lets you read the services and goals in a concentrated way, without having to keep half your brain tuned to what's happening in the meeting while you're trying to read; and most importantly, it lets you know any areas where there are disagreement and lets you think about how to prepare for that.

2.  You are allowed to bring support people with you.  Many states have non-profits with free trained advocates who will go with you.  These people know the process and the paperwork and your rights backwards and forwards, and they can talk to you about what your goals are for your child and then help you fight for that.  You might also bring a trusted relative or friend, even if they don't know a thing about IEPs, so that you feel emotionally supported.

3.  The things to really focus on in the IEP are placement, services, accommodations, and goals.
I have re-written this paragraph three times and can't quite seem to get it right - there's too much to say and it's too specific to individual situations.  But here are 3 places where you might need to prepare for disagreement:  1) whether your child qualifies for an IEP in the first place;  2) what is the least restrictive and most appropriate placement for your child (particularly if there are behavioral issues that negatively impact the other students in the classroom); and 3) getting a really expensive service in place (like one-on-one nursing care).  (It's beyond the scope of this blog post, and for that matter my "expertise", to go into strategies about how to deal with these things.)  Goals are usually much easier to negotiate, but still important to think about carefully, as they will structure what is pushed in your child's learning (so in a way, they function like school testing).  Discussions about goals are also a good chance to have a back and forth conversation about what you can do at home to complement what they are doing at school to help your child meet his goals.

4.  Know that you have rights to challenge.  If you didn't get to ask for something at the meeting, or you didn't have a chance to bring in supporting paperwork, or something new comes up -- you can ask for a new IEP meeting at any time.  You don't have to wait the full year.  If you did get to make your requests but the team did not agree to them, you have the right to challenge at a due process hearing.  You don't have to understand how this works going into the IEP meeting - just know that if you weren't happy with how things went, that doesn't have to be the end of it.

5.  Remember that it's a balance -- you're the best advocate for your child, but the other members of the team also want the best for your child.    No one knows your child or cares about your child as much as you do, so you should come in prepared to advocate hard. On the other hand, the other members of your team (therapists, teachers, etc.) got into their field because they care about kids, and they want to see your kid succeed.  They might say no to some of your requests because they have to think about competing needs (like limited school budgets, the needs of the other kids in the classroom, complying with the rules, etc.), and that's why it's so important for you to advocate hard - but it's also good to remember that these team members spend the whole school year caring for your kid, and it's good to give them respect and appreciation for that.  Mostly because they deserve it, but also because building a good relationship with your child's team will be beneficial to your child.

That's the end of my tips.  Having said all that - we have had a very good experience so far with Joshua's team.  We (parents and school team) are mostly in agreement about services and goals, and when we have minor disagreements, the school has been very responsive to our concerns.

So I know I have some other friends who are / were also IEP parents, and also some teacher / therapist friends....I would love to have you share your wisdom & tips on this subject.

Surgery & Genetics

A month ago, I wrote a blog about some upcoming health stuff happening with Joshua.  Here are the updates:

Surgery - the actual procedures (ear tubes and dental work) went well; the day itself was pretty hard on J.  This is the first surgery he's had in 2 years (after 9 in his first 18 months), and it definitely changes the dynamic when kids are old enough to understand what's going on.  I don't know if it's entirely worse, though:  there was an idea floating around when he was getting all the surgeries done as an infant that at least he wouldn't understand / remember them -- in some ways this is worse, because there's not a clear distinction for the baby between things that cause pain and things that offer safety & comfort.  Now when he gets surgery, he is old enough to understand that it's scary when he's walking back with the anesthesiologist and scary when he's waking up feeling disoriented and in pain, but he also knows that when we head home, he's going to a safe place and the procedure is over.   I think it boils down to this:  surgery is always hard, and there are both new pros and new cons as kids get older and more aware of what's going on.  As far as surgeries go, this was a minor one and there were no post-surgical complications, so we're glad for that, glad to be moving past it, and glad that there are no upcoming surgeries on the books!

Genetics appointment - Yesterday, J had a genetics appointment.  He had previously seen a geneticist when he was 1 week old and 9 months old, both times in Utah, and they determined that he did not have either of the two syndromes most commonly associated with Pierre Robin Sequence.  However, there are a bunch of less common syndromes / chromosomal abnormalities that are associated with PRS, and Josh has a few features that make it seem possible that he has an undiagnosed underlying syndrome.  (Most notably, a pinky finger that won't bend and overlapping toes.)  The geneticist did two things that made me very happy:  1) She said that she thinks Joshua is doing great overall (as far as health, development, etc.), so there's probably nothing to worry about.  (We think so too, but it's always super reassuring to hear it from a doctor.)  2) She ordered a microarray, which will test for any chromosomal deletions or duplications.  It's always helpful to have more information rather than less, so if it turns out he does have something chromosomal going on, we will better know what health issues to monitor.  And if not - great!  Either way, it will be good to know.  So it turns out that it is true (at least in our small sample size of one each) that West Coast geneticists do rely on physical examination and East Coast geneticists do rely on testing.  They already gathered J's DNA using a cheek swab, and we should have the results in about 6 weeks.

That's all the updates for now!  Will post again when we get the results of the microarray.

Annie Dillard

Earlier this year, I read Annie Dillard's "Pilgrim at Tinker Creek", which is a Pulitzer Prize winning non-fiction book of reflections on nature with some philosophy, biology, and theology thrown into the mix.  This is very much NOT the kind of book that I normally read and it took some effort to get all the way through, but it was well worth the effort as it's the kind of book that lingers with you for months.  It could inspire all kinds of discussions, but for this blog post, I'll do two:  

1.  What is art?

The best kind of art shows rather than tells.  (Credit to Kenny for this idea.)  There are plenty of articles telling me that I should slow down, stop and smell the roses, unplug from technology, and spend time in nature.  I agree with these sentiments, but when you are just told to spend more time in nature, it feels like one more item on the to-do list.

What Dillard does, and what makes her writing true art, is she shows you examples of things in nature that are beautiful, or startling, or surprising -- and all of this makes you want to get outside and see an example of the thing she's talking about.  One example:  Eels  (yes, the snake-like sea creatures) sometimes migrate across meadows!  Check out this description:  "Imagine a chilly night and a meadow; balls of dew droop from the curved blades of grass.  All right:  the grass at the edge of the meadow begins to tremble and sway.  Here come the eels.  The largest are five feet long.  All are silver.  They stream into the meadow, sift between grasses and clover, veer from your path.  There are too may to count.  All you see is a silver slither, like twisted ropes of water falling roughly, a one-way milling and mingling over the meadow and slide to the creek.  Silver eels in the night:  a barely-made-out seething as far as you can squint, a squirming, jostling torrent of silver eels in the grass."  How crazy would it be to see that sight??

"Pilgrim" is full of examples like this, facts about nature that make me pay close attention to what's around me as I'm in the backyard or out for a walk.  I'm not paying attention to nature because some HuffPost article told me it would be good for me; I'm paying attention because Annie Dillard showed me examples of things that would be amazing to observe.

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2.  I believe that God is eventually going to restore the earth to perfection - what will nature look like then?


A key part of my Christian beliefs is that, in the future, God is going to create a new earth, and that it will be perfect.  So in some ways it will be like what we have now - we will inhabit physical bodies, live in a real physical time and space where we can see and touch and taste, and still co-exist with nature and with other human beings.  But in more important ways, it will be nothing like what we have now, because all the bad things will be gone.  Our bodies will not be subject to health problems of any kind and they will not experience decay and death.  No more war, school shootings, poverty.  No more famine, tsunamis, earthquakes.  No more brokenness in relationships, abuse, abandonment.  No more of me acting in ways that are selfish, lazy, prideful, narcissistic, cowardly.

Going back to the book, Dillard describes in great detail how very brutal nature can be.  I tend to think of nature in a much more cartoonish, Bob Ross type way - beautiful mountain vistas, birds singing their songs to each other, turtles lazing in the sun.  Dillard talks about these kinds of things a little bit, but she spends much more time describing animal species that eat eat their own young, or purposefully abandon their newborns, or eat their mates.  She points out that 10% of the world's species are parisitic and ponders what it's like to live as a parasite (or as the host of a parasite).  It's a kill or be killed world for animals, from the most microscopic insects to the carnivores at the top of the food chain.

So my question is:  what will nature look like when the world is restored to perfection?  Will the parasitic species cease to exist?  Will there even be such a thing as a carnivore?  Will praying mantises no longer eat their mates?  Will poisonous animals no longer be poisonous?  I don't think we can answer any of these questions, but it's interesting to think about.

The New Jim Crow

I just read The New Jim Crow: Mass Incarceration in the Age of Colorblindness,.  The author, Michelle Alexander, argues that  mass incarceration, and specifically the War on Drugs, has created a system that looks much like the old Jim Crow laws.  I approached the book with skepticism, thinking that although there is certainly some racial discrimination and disproportionately harsh effect on African American males in the criminal justice system, there's no WAY it's anything like Jim Crow - and I was astounded to see how powerfully she made her case.

The argument in brief is this:  Drug laws became much harsher in the early 1980s, and following that, drug convictions caused the prison population to explode.  Most of the people (around 90%) being arrested for drug crimes are black or brown, even though studies have shown that black and white people use and sell illegal drugs at the same rates.  At every stage of the criminal justice system - who gets stopped, who gets searched, who gets arrested, who gets better plea bargains and less severe charges, who gets tried in state v. federal court, who fares better in jury trials, etc. - black males receive dramatically harsher treatment than other groups.  A significant percentage of black males end up spending time in prison or on probation or parole for felony drug crimes (unlike other groups, and despite the fact that they are using and selling at the same rate as other groups).  Once you are labeled a felon, you automatically lose rights or face discrimination in a whole host of areas - voting, housing (both public and private), employment and professional licensing, educational loans, and public benefits - and it becomes really difficult to survive, let alone thrive, in mainstream society.  Often, this loss of rights hinders you for your entire life.  Because mass incarceration followed by loss of rights mostly affects African American men, it affects them in large numbers, and it affects them for their whole life, it creates a social order that looks a lot like the social order in the days of the Jim Crow laws.

At this point, it's important to acknowledge what I felt like was the major flaw in Alexander's argument:  the people who are subject to mass incarceration have violated a race neutral criminal law, and this is a *significant* difference from the Jim Crow laws that applied to all African Americans and no one else.  It might be because I was born in the 1980s and was fully indoctrinated into the War on Drugs rhetoric, but I think you can't just toss out drug laws.  Drugs wreak havoc in our society:  they cause collateral crimes of violence and theft, they destroy the lives of addicts, and they contribute to the abuse and neglect of children. It may be true that major reform is needed at every level of the system, but you can't just abolish drug laws, and you can't just forget that people have violated drug laws that are serving a legitimate purpose.

But putting that very significant issue aside, this book paints a vivid picture of how difficult every aspect of your life becomes once you are branded a felon, and it raises a whole host of issues, such as:

• What is the War on Drugs accomplishing, and specifically, is it accomplishing the goal of reducing drug use and drug related crime?
• Are prisons the best place to load up the dollars, or could the drug problem be addressed more humanely, effectively, and economically by focusing on education and treatment programs? 
• If mass incarceration is the appropriate solution to the drug problem, and if drugs are used and sold at equal rates by African Americans and Caucasians, then how do we get more of the white users and dealers convicted and incarcerated?    
• How do we create more fair treatment of African Americans at all levels of the criminal justice system?  And in portrayals of the criminal justice system by the media?  
• Why do we have mandatory minimum sentences on drug crimes?  Why can't we give judges the discretion to impose a harsh sentence where appropriate and a more lenient sentence where appropriate?  
• What is accomplished by not allowing felons or ex-felons the right to vote?
• Can we find a way to more narrowly tailor the restrictions ex-felons face, particularly in employment and housing?  Or come up with some separate program to support ex-felons as they re-enter society, so that they don't turn back to a life of crime because all the employment and housing doors are closed in mainstream society?  

If these ideas spark your interest - whether they strike you as right or wrong - then I would really suggest you read the book.  I have just skimmed the briefest surface in this post.  I don't fully buy into Alexander's thesis, but I learned a lot from this book and would highly recommend it.

Family & Josh health update August 2014

This week, we arrived home after two months of driving across the country and back.  We had a GREAT time seeing everyone - Reno friends and family, Nebraska friends and family - and it was sad to say goodbye to our two homes away from home.  But it's nice to be back in our own house, it's nice not be living out of a suitcase, and it's nice to get into a daily routine that will last more than a week or two :).

I wanted to write an update on Joshua's  health, since we have some really good things to report and also a couple prayer requests.  First, the good things:

• Oral feeding is going well!  We had our ups and downs during the summer, as our routine was constantly changing and for some reason J seemed to get sick every 3 weeks or so.  But he ate well enough to maintain his weight through the summer, which is really exciting and a huge step towards us being able to take the g-button out.  He has also learned to take his daily medications by mouth (or to put it more accurately, i have learned how to grind them up and hide them in his yogurt).  So now we will see if he continues to eat well this fall, and hope to take the G-button out around Christmas.
• J's speech continues to improve.  Last summer, J struggled to put together 2 word sentences, which was considered to be a significant delay.  This summer, he regularly strings together 5+ word sentences and he's doing much more interactive and spontaneous talking.  He hasn't had his speech evaluated recently, but it seems like he's making great progress.  One great thing about the road trip was that he got lots of cousin time in both Reno and Lincoln, as well as lots of new experiences, and I think both of those things were helpful for his speech. 

Prayer requests:

• Upcoming surgery - J has surgery scheduled for this Friday to get ear tubes placed and to get some dental work done.  This should be a simple set of procedures and they are not admitting him, but surgery is always a little scary.  Also, this is the first time that he will be aware of what's going on as we take him in for surgery, so I would especially appreciate prayers for peace and calm for J as he goes back to the OR and as he recovers from anesthesia.  
• Genetics appointment - In mid-September, we're taking J in for a genetics consult.  This appointment is always nerve-wracking because they can deliver information that has life-long implications.  It will be interesting to see how that appointment goes because apparently East Coast geneticists and West Coast geneticists do things differently.  West Coast geneticists, which is the only type J has seen so far, diagnose based primarily on physical examination, family history, etc.  East Coast geneticists are (supposedly) much more likely to do blood and DNA testing.  [By the way, as a total sidebar, it is SHOCKING how differently *really important* medical procedures are handled based on where your child was born.  Since J was treated at University of Utah as an infant, he got a jaw distraction to help with his breathing.  If he would have been treated in Virginia, he would have been trached.  Most of his specialists doctors out here have never seen a PRS child that wasn't trached.  We are extremely glad that J was born in a place where jaw distraction was offered as a treatment option rather than going straight for the trach.  End sidebar.]  So it will be interesting to see if the East Coast geneticists want to do a bunch of testing since minimal blood testing was done out in Utah.  

Other than that, life is back to normal around here.  J starts school after Labor Day and we are going to attempt potty training before then, so wish me luck!

Reno Myths Debunked and Trip Update

Reno is a unique town, and i mean that in the literal sense of the word ("being the only one of its kind").  Thanks to shows like Reno 911 and pop culture references like Johnny Cash's line "I shot a man in Reno, just to watch him die", everyone has an idea of what Reno is like -- but many people haven't actually visited Reno.  So without further ado, here are some popular Reno myths, debunked:

#1:  Reno is just like Vegas, except smaller and seedier.  This summarizes most of the other myths, so I will break down why this is wrong in more detail below -- but Reno is WAY different than Vegas, and I think most everyone who lives in or is associated with Reno (including me) vastly prefers Reno over Vegas.

#2:  Reno and Vegas are geographically close to each other.  When I was in law school, the career counselor (who knew that we were considering Reno as a possible destination) kept sending me job listings in Las Vegas.  Reno is 452 miles - an 8 hour drive - from Las Vegas.  Commutes from Reno that would be much more doable than Vegas:  Lake Tahoe (48 minutes); Sacramento (2 hours); or San Francisco (3.5 hours).

#3:  Like Vegas, Reno's topography is all desert.  The first time I visited Reno, I was stunned by its beauty.  Reno is surrounded by the Sierra Nevada mountains and the Truckee River flows through the center of town. To the east of Reno is desert, but to the west is Lake Tahoe, and Reno draws geographic characteristics from both.  There are dusty mountain trails lined with sage brush, but there is also lots of green space and an alpine feel.

#4:  Like Vegas, Reno is unseasonably hot all the time.  Reno gets all 4 seasons, but the brutality of winter and the intensity of summer are subdued by the desert climate.  The temperatures get into the 100s in the heart of summer, but thanks to the desert climate, it cools down to 70 or below every single night.

#5:  Like Vegas, Reno culture is dominated by casinos.  While the casinos do play a part, local culture is also heavily influenced by:

• Reno's frontier history:  there is a heavy independent / libertarian sentiment here.  
• California influence:  California is less than an hour away, and you can see that influence in all sorts of things - the main example that comes to mind is, at the grocery store, the organic section is bigger than the meat section.
• Outdoorsy types:  If you are into outdoor sports, Reno is a wonderland.  In the summer, mountain biking, hiking, trail running, backpacking, kayaking, etc. are all easily available.  In the winter, the slopes of Lake Tahoe are less than an hour away.  This plays a significant part in what people do with their free time and expendable income.  

It would be dishonest to say that casinos have no effect on local culture.  They dominate downtown, they draw in tourists, and they boast some of the nicest restaurants and bars in town.  Because they advertise using scantily clad women, you see a lot more skin driving around Reno than other towns.  Although locals mostly avoid casinos, you can't avoid being around gambling - there are slot machines in every grocery store and gas station.  But when you live here, you get used to the casinos and slot machines really quickly, and soon you hardly notice them.

#6:  Prostitution is legal in Reno.  It's legal in other parts of Nevada, but not in Reno city limits.

#7:  All-you-can-eat sushi is a big thing in Reno.  This is true.  And it's glorious.  If I was a competitive eater, my food of choice would be sushi.

Thus concludes my Reno myth debunking, but Reno friends, please feel free to add to the list.
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For part two of the blog, here is a recap with the highlights of our Reno trip this summer.

-Family and friends time!  I am really blessed to have awesome in-laws.  (My mother-in-law Betty is pictured above reading a story to J.)  They are so kind, generous, and fun to be around.  And they allow (and even encourage!) us to crash with them for a month at a time.  This is no small thing when you've got two toddlers running around making noise and messes at all hours of the day.  I'm so grateful for them.  We also got to see lots of friends on this trip and attended some really fun get-togethers (including a children's tea party, pictured below, and a food truck rally).

- Wherever we are in our travels, we spend a lot of time at these places:  the park, the mall, the library, and the Children's Museum (or zoo / aquarium / local museum of choice).  Reno has a really nice children's museum complete with a model Truckee River, a star gazing room, a mining tunnel, an art room, and multiple block building rooms.  The kids loved it.

- Lake Tahoe - we made it up twice this month  First, we took the kids up for a beach day with their cousins and a good time was had by all.  (Joshua spent over an hour playing with a piece of drift wood, pretending it was a train.)  Second, Kenny and I had a really fun double date with Kenny's brother Jason and his wife Naomi to see As  You Like It at the Tahoe Shakespeare Festival.

- Dates with the hubs - this is the time of year when Kenny and I really get to spend one-on-one time together outside of the house, and it's so nice.

- Running on the Steamboat Ditch Trail - a couple times each week, I ran on this mountain trail near my mother-in-law's house.  It is so beautiful and peaceful and reminded me of Alamosa.

So now we are starting the journey back East.  In a couple days, we'll arrive in Nebraska, stay with my parents for 10 days, and then head home.  Hope to see some of you along the way!
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Overprotected Children Culture Gone too Far?

Earlier this week, Ross Douthat of the NYT wrote an article about how children are overprotected and more specifically, how this trend of overprotection has led to parents being unfairly punished for not hovering over their children.  This idea - that the culture of overprotecting children has gone too far, that parents who give their children independence are at risk of having their children taken away - seems to resonate with many.  I have three thoughts about all of this.

1.  I disagree that it's a bad thing to expect rigorous supervision of young children.  I still see plenty of older kids riding their bikes around the neighborhood alone, I see middle schoolers alone at the playground, and I see elementary age kids playing alone in their yard while the parent is in the house.  It is only the REALLY young kids - the preschool and youngest elementary kids - who are expected to be supervised by someone all the time.  And since I spend a lot of time with toddlers these days and have seen their total lack of judgment and impulse control, and how quickly they can put themselves in serious danger, I think it's totally appropriate to expect rigorous supervision of younger kids.  (Note:  I'm not saying that it's easy or that I do it perfectly or that it's not a major challenge for people without support.  I'm just saying that it seems like a reasonable expectation that young kids need to be actively supervised.)

2.  I disagree that kids are wrongly being thrown into the foster care system because of our overprotective culture.   I spent two years representing abused and neglected children in their foster care cases, and when it comes to removing kids from their home, it's very rarely the case that the kid gets removed without reasons that go far a one time incident of a child being left in a park.  (It is much more frequently true that once a kid has been in foster care for awhile and the parents have made their home safe, the system can be too slow in allowing the kid to return back home.)   The cases described in the article where the kids were left at a park, or wandered through a parking lot near home unsupervised, or were at home alone for a few hours and then ended up in the foster care system -- not once in my hundreds of cases did I see a situation like this, unless this lack of supervision was the pattern rather than a one time exception.  These events might cause someone to call CPS, and cause CPS to open an investigation -- but a court is unlikely to remove a kid from their home based on a one time incident of lack of supervision.  Kids get removed because they are left alone for days at a time, or because they are abandoned indefinitely with a friend or relative, or because the pattern of being left alone has caused some kind of harm to the child (like missing a bunch of school, or the child injured himself because of lack of supervision, or the child developed attachment disorder) - not because they are left at the park once for an hour.  I'm not saying that the child welfare system never makes a mistake, or that there aren't some outlier cases where something like this might happen.  But if you're providing a generally safe home and someone reports you to CPS because your 10 year old child was playing unsupervised in the park, in the vast majority of cases, nothing will happen - the case will just close.

3.  There should never be a case where a child gets removed from a loving home just because the parent is poor.  The real story here, which is mentioned briefly in the article, is how this "culture of overprotection" is especially hard on single parents who do not have child care and somehow still have to find a way to provide for their family.  These are the cases where kids do get removed from the home -- where parents do have to turn lack of supervision into a pattern, and where this lack of supervision (at least allegedly) causes harm to the child.  This seemed to be the case for at least half of the parents profiled, and these are the ones that really tug at the heart strings.  I absolutely 100% could-not-agree-more that struggling parents need more child care support as they take steps towards economic self sufficiency.  The lack of affordable child care is hugely problematic for single parents who must meet work requirements in order to receive welfare, food stamps, and housing benefits, or who are trying to attend school or a job interview so that they can provide for their family.  We should design public assistance programs so that parents aren't forced to make these tough decisions - for example, by ensuring that parents can always get the child care support they need or else be exempted from work requirements in public assistance programs.  And for all parents struggling to find child care as they attend job interviews, community college, etc., we need to have more affordable, flexible hours, conveniently located, high quality child care available.    To me, this seems like one of the absolute best things government subsidies or charitable funds could be supporting.

 What do you think about the article, or about the idea that kids are overprotected, or about anything else on this topic?

Road Trippin 2014

After three days of driving, a 10 day stop in Nebraska, and three more days of driving, we made it to Reno!  Here are some notes from the road and pictures* of the type of scenes we saw on our drive:

Smoky Mountains in Western Virginia*

-- It was fun to drive across the United States in the weeks leading up to the 4th of July, as it was a good reminder of what a geographically diverse, spectacularly beautiful country we live in.  My favorite parts of the drive this time were the Smoky Mountains and the Park City / Salt  Lake City area of Utah.

Stan Musial Veterans Memorial Bridge in St. Louis*

- - We've done the 1400 mile Nebraska-to-Virginia trip in 1 day and 2 days.  This time, we took 3 days, and we all preferred the slower pace.  This allowed us to make longer stops, explore the towns along the way, and make 3 park stops per day.  Which leads me to comment on a type of story that's been trending lately, first as a cover story in  The Atlantic  and more recently as an article in the New York Times:  the idea that playgrounds can be too safe and this is bad for older kids (they need danger, they need sensory experiences, they need exercise and won't use equipment designed for toddlers, etc.).  These reporters should visit the middle of the country to find their park utopia.  We consistently saw parks that would be great for older kids -- huge slides  and challenging climbing structures; old school equipment like merry-go-rounds; zip lines; etc.

Nebraska (aka The Good Life)*

-- We spent most of our time in Nebraska hanging out with family, which i loved.  There is just something about being in Nebraska that refreshes my soul and makes me feel like everything is right in the world.  That's laying it on a little thick, but seriously, I just love spending time in Nebraska.

Wendover, Nevada*

- - One of our hotel nights was spent in Wendover, Nevada (pictured above).  This town, wedged between the Salt Flats of Utah and the barren dessert of eastern Nevada, is so very in the middle of nowhere that it sort of feels like you're on the moon.  And then, unexpectedly, these bright lights appear on the horizon, and you see what appear to be three huge Vegas style casinos in this tiny little town out in the boonies  We've driven through Wendover a dozen times and I have always been SO curious about these giant casinos in this tiny little town, so this time we stayed in the Wendover Peppermill.  It turns out that the casinos are not quite up to Vegas or Reno standards in terms of amenities.  The gaming floor is huge and the hotel rooms are spacious, but aside from the actual casino, there are no amenities - no pool, no dozens of restaurants, no nightclub, no spa.  So if any of you are tempted by a too-good-to-pass-up weekend getaway trip to Wendover:  I'm going to strongly urge you to reconsider.  But if you're driving through on I-80 and looking for a big hotel room for a good price in that general area, then Wendover might be the perfect stop for you.

Wyoming*

-- The kids have been doing great with the driving.  Joshua likes to watch for trains, and we have seen dozens in the western half of the trip.  We've had some difficulty with Joshua's eating while we travel.  It really helps him to have routine - eating the same meal at the same time and place each day - and of course this is really hard to manage with traveling.  Now that we're in Reno for a month, we've been able to set up more of a daily routine, and his eating is picking up.  I don't think he's lost weight yet, and if things do get worse, we've still got the G-button in place and can use it if needed.  But I would appreciate prayers for Joshua's eating during our summer travels.

We will be in Reno for most of the rest of July, and then back in Lincoln for 10 days at end of July and beginning of August - if you are a Reno or Nebraska friend, I would love to see you!

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* None of the photos pictured in this post were taken by me.  All were found by doing a Google Image search of my favorite areas through which we drove.  If, for some unimaginable reason, this blog post gets a big readership, I will go back and post photo credits.

Summer time

We are approaching our second annual cross country road trip, which will be very much like last year's trip  except that we will be on the road for two months rather than three.  (In case anyone's wondering about travel details:  We will be in Lincoln for a week in the middle of June and then the first two weeks of August, and we will be in Reno for most of July.)  Strangely enough, this unusual way to spend the summer will be only the second time where we have a "repeat" summer in the eight years we've been married.  Here's a little walk down memory lane of the  past eight summers:

2006:  We kicked off the summer by getting married in Lincoln and honeymooning in Maui.  Then we moved to Oakland, CA, where we subletted a studio apartment.  I clerked for a housing law non-profit; Kenny clerked at his Uncle Brian's law firm.  We dined on Easy Mac and sushi, took day trips into San Francisco, and attended church in Berkeley.

2007:  We stayed with Kenny's dad in Reno and studied for the bar exam.  When we needed study breaks, we would have free throw contests or drive over to McDonalds for a yogurt parfait.  We took the bar exam in a casino, then celebrated when it was over.  In August, we used my Honda Civic to haul a trailer of stuff as we moved from Durham to Lincoln.

2008:  We lived in Lincoln.  I made my very first court appearance, arguing a class action Medicaid case.  Kenny finished up a judicial clerkship and spent the months before starting his new job at a law firm writing and playing golf.

2009:  We lived in Reno, for the first time in a house that we owned.  Kenny was working at a law firm, I was working at Legal Aid doing child advocacy.  Kenny managed to convert our backyard from a dirt pile into a pleasant place to spend time.  We enjoyed our two new puppies, had barbeques, and took day trips to Truckee.

2010:  This was our first "repeat" summer - still lived in Reno, still both working - but this time I was pregnant.  So lots of doctor's visits and laying around moaning about the heat :).  Work was busy that summer - I had to prepare for 4 trials right before my due date.

2011:  This was our craziest summer.  In June, we were trying to sell the house in Reno, Joshua had his most major surgery (the jaw distraction in Salt Lake City), and Kenny was working on a huge case at work.  In July, we drove our family cross country to Virginia Beach and lived in a hotel for 10 days before moving into our new house.  In August, we experienced our first hurricane and then flew Joshua back to Salt Lake City for part two of his jaw distraction surgery.  J was on oxygen this whole time, which involved some interesting logistical challenges, such as establishing with Apria offices in every time zone.

2012:  We spent the full summer in Virginia Beach.  I was very pregnant.   Zoey was born in August!

2013:  We did our first summer road trip, detailed in several blog posts from last summer.

And now we are doing a repeat summer road trip.  Looking forward to seeing friends and family in Nevada and Nebraska!

What We Talk About When We Talk About Food

I don't know about you, but lately I've been feeling bombarded with information about food and discouraged because it seems like everything I eat or feed my family is somehow bad.  I care about the health of my family (I have probably spent more time researching health concerns on the Internet than I spent studying for the bar exam), and I totally agree with the idea that health and food are intimately related.  Yet somehow, all this food hype makes me want to bury my head in the sand.  Food information is easily (overly?) available via numerous documentaries, books, articles, Buzzfeed lists, etc.  So, armed with all this information, why do I not conform better to best food practices?  Here are the two main reasons:

1.  Informational Confusion:  It's hard to sort between health concerns, environmental concerns, ethical concerns, and taste concerns, since these things often get lumped together in the "bad food" category.  It's hard to tell what's really crazy scary bad v. what's maybe not the best.  It's hard to tell what's based on fear of unknown future consequences (such as GMOs) v. science.  It's hard to know what's being called a good food today, until a new study labels it a bad food.  (Ie butter, coffee, wine, eggs.)  It's hard to weigh competing concerns - like, is it better to eat 5 daily servings of non-organic produce, or to eat half as much produce but have it be organic?  But information is not the main thing.  The basics of how to eat better aren't that hard:  less sugar, less salt, less processing; more produce (especially greens, preferably organic) and whole grains; less and better meat; less and more wholesome snack foods and dessert.  The main thing is...

2.  Practical Concerns:  there are limits to what i can afford, what kind of products are available in my local grocery store, how much time i can spend on food prep, and what my family members are willing to eat.  There's also the issue, let's just be honest, that while I want to prolong the length and quality of my life, I also want to enjoy it, and this involves eating the occasional milk shake.  (Okay, more than occasional.)

So, in light of these concerns, here are my "eat better food" resolutions.  I'm hoping these things will be more helpful than watching another documentary about how Monsanto is evil or reading a viral article about what really goes into a Chicken McNugget:

• Find real food recipes that are affordable and manageable - I used to think the affordable and manageable part was impossible, but i recently bought Mark Bittman's cookbook, "How to Cook Everything", and he has all sorts of real food recipes that are not more expensive and barely take more time than heating up processed food.  So I'm reading up and trying to incorporate some of these in my repertoire.  
• Find more information about "intermediate foods" - I know about super foods like broccoli and almonds, but my kids won't eat these things. I want to learn about the alternatives that are better than Cheetos, Skittles, and soda, but that kids will actually eat.
• Drop the all or nothing attitude.  I am trying to slowly move away from processed food where it's practical, but it's not something that happens overnight.  Sometimes cooking real food seem like an all or nothing lifestyle, when in fact cooking a few real food meals a week, or cooking meals that combine homemade elements and pre-packaged elements, or eating a few more servings of veggies would all be a lot better than doing nothing.   
• Stay away from food articles that are guilt inducing but not otherwise helpful.  Self explanatory.  
• End goal:  be more intentional about food.  I'm definitely not going to be giving up all frozen pizzas or pre-baked cookies, but I'm going to try not to have them be my default so often.  I would like to learn more "real food" recipes and keep ample food on hand so that when we're eating frozen pizza, it's because we're really craving it, not because it's the only dinner option in the house.  

Exciting News!

Today we met with J's nutritionist and she gave approval for us to stop using his feeding tube!  (If you're wondering why he uses a feeding tube, here's the story.)  We will stop using it for food starting today, and use the next 8 weeks to transition his water and medicine intake from tube to mouth.  Then he will keep the tube in for another 6 months to make sure he can maintain his weight.

I knew there was a good chance this would happen today (we just saw his GI so I knew his weight and growth have been good, and we've been tracking his diet so I knew his calories and nutrients were in the right range).  But it's still sort of unbelievable that we finally made it to this point.  Every time we thought we were getting close, some new bump in the road came up.  When we left the NICU, we thought there was a good chance that he would be eating orally within a month, once he passed a swallow study.  If I knew then that we were going to have the tube for 4 more YEARS rather than 4 more weeks, it would have felt utterly overwhelming.  The feeding tube turned out to be not nearly as bad as I expected, especially considering how challenging it can be to feed him by mouth.  Nevertheless, we have been looking forwad to this day for the past 3 and a half years, and I am so excited that it's here!!  I'm not a big crier (that's an understatement), but I cried happy tears on the way home from his appointment, cried again on the way to the gym, and will probably cry again before the night is over.  This is such a milestone for us.  I'm so proud of Joshua for working so hard even on the days when eating is a physical and mental challenge; I'm grateful to the therapists who have helped us teach him how to eat; and most of all, I'm praising God for getting us to this point.

To mark this milestone, here are some of the unique memories of tube feeding:

• Leaving the extremely sterile NICU and tube feeding J outside the hospital for the first time near a gas station in rural Nevada. Becoming 1000% more aware of germs everywhere.   
• Putting in the NG tube for the first time by myself at midnight when J was 5 weeks old - feeling terror as it was happening and then feeling like a superhero when I got it in correctly. 
• Countless hours spent watching Friday Night Lights and Grey's Anatomy at all hours of the day and night while the food slowly made it's way through the NG tube and we monitored to make sure he didn't choke.  
• Finally getting some sleep when he got the G-tube, fundoplication, and feeding pump at age 4 months.  
• "Feeding the bed" - the nights when the feeding tube got disconnected from his stomach and the formula got all over the mattress rather than in his belly.  (You will not meet a tube feeding family who has not experienced this rite of passage.)
• Thinking he swallowed his G-tube and taking him into the ER for an X-ray (we wondered if this was even possible - it turns out to be one of the very few things you can't get a Google answer for).  
• Watching him pretend to tube feed his teddy bear.   
• Administering food and medicine via G-tube on a crowded Southwest flight with the help of the kind stranger next to me.  
• Explaining to J that filling the car with gas is like the car getting tube fed.   

I could go on for pages, but will stop there :).  We would love continued prayers for Joshua's eating - it's a little scary thinking about taking out the tube down the road - but today is a day of celebration and praise!