Blog-a-versary

This week I'm celebrating the 3 year anniversary of my blog!  My hope in the beginning was to make it through a full year without running out of ideas and quitting early, or without dying of embarrassment (due to no readers / mortification over the content I produced / unpleasant exchanges with readers).  I'm happy to say that I'm still alive and kicking!

Since starting this blog, I've talked to several people who have thought about starting their own blog, and almost always they are great writers and would be a welcome addition to the blogosphere - if you are one of those people who thinks about starting a blog, this post goes out to you. I'm going to discuss some of the things I've enjoyed about writing a blog, some of the things I was worried about (and whether they came to pass), and tips for those who are thinking about starting their own blog.  I'm also going to do a brief Erin's Blog in review, because it wouldn't be a blogaversary without some celebration of old posts!

What I get out of writing a blog and why you should do it too:

• Creative outlet - Most of my time these days is spent meeting the needs of my kids (martyr alert!).  So it's been really restorative for me to work on a project that is my own thing, done solely because I want to.  Also, it's been really helpful to have this space dedicated to working on my thinking and writing.  Not that this blog is some deep, literary endeavor, but you'd be surprised how much even the light and silly posts cause you to think creatively and try to craft your prose well.
• Risk is good for us - I will discuss what I perceived the risks to be below, but suffice it to say
  
  that I initially perceived blogging as terrifying.  Eleanor Roosevelt said that you should do one thing each day that scares you.  So every time I write out my thoughts and feelings, and then publish them, and then advertise that I published them by putting a link on social media -- I'm building up my capacity to be brave. 
• Chance to discuss things more in depth - I think there used to be (and maybe still is?) the perception that you have to be pretty narcissistic to write a blog.  Why would the world care to read as you spout your thoughts about every random thing?  I think the fact that we're living in the age of reality TV and social media turns the role of blogs upside down.  Maybe it used to be the case that blogs were the lightest, most navel gazing form of communication.  But now I think they're a chance to delve deeper into a topic than the ways we primarily communicate (text, email, status update).  I can write a one sentence Facebook update about Joshua's health or I can type out several paragraphs in my blog.  I can post a meme about a current event, or I can write in a much more nuanced way in a blog post.  Blogs are a chance to expand, and if things go really well, to elevate, the conversation.  

Things I worried about when I first started the blog and how they turned out:

• No one will read it:  Mostly this doesn't happen, but every once in awhile it (pretty much) does - and it's okay.  You just move on to the next post, and usually it turns out the readers will come back.  After you've done a bunch of posts, you start to get a sense of what is really going to bring out the readers (Joshua health updates are my most popular) and what is likely going to bomb (book reviews), and you can mentally prepare accordingly.  
• I have nothing to say / it will be dumb:  You can handle having nothing to say two ways - 1) only write when you feel the inspiration (the big problem with this is if you go through a long dry spell, your blog dies), or 2)  prepare for the times when you feel less inspired by frequently thinking about ideas for blog posts and writing down ideas for the future.  After a few months of getting out everything you always wanted to say, coming up with ideas is the hardest part of regular blogging, so having a list of ideas helps you in the weeks when your inspiration well is coming up dry.  As far as the content being dumb, some of your blog posts will be stronger than others, but if you are the type of person to do a blog, your writing is probably on point and your posts won't be dumb.  
• Readers will be mean and trample upon my sensitive feelings:  This has literally never happened, and I do indeed have sensitive feelings about my writing.  I've had readers disagree with me many times, sometimes strongly, but they have always been kind and respectful.  It helps when your blog readership stays within your circle of friends and aquaintances, so even though people are commenting over the Internet, they also know you in real life and don't get the same mob mentality that it's okay to say mean things and make personal attacks.
• I don't want people to read my writing:  Now I like it!  I've gone from being prideful one way (afraid of having people read my writing and tell me it's no good when I think it is good) to prideful another way (feeling much more confident in my writing and wanting a bunch of people to read it).  
• I don't want to unintentionally hurt / offend my friends and family: -- This is the hardest part of blogging for me.  I don't worry about this so much with opinion posts, but more in personal / family posts.  You never know who exactly is reading your blog, and I like to try to be sensitive to my audience.  When discussing parenting, for example, I would prefer to tailor my topic and tone differently for people who are childless (maybe by choice, maybe not), another for fellow parents, another for fellow special needs parents, maybe yet another for parents who have lost a child.  You can't do this with a blog, so you do your best to be sensitive to whoever might come along, and you plow ahead.  I don't usually write about tremendously controversial or hurtful things, but you never know where people's tender spots are.  

Tips for getting started:

• Post at least once per week for the first several months.  This will get you in the habit of 1) making time to blog, 2) looking for ideas all the time.  It will also eventually lead you to write some posts that are winners and some that are losers, and you will be able to get past both of those experiences and write without primarily thinking about how your blog is going to be received.  After you've gotten in the habit of regularly thinking of ideas and writing, you can shift to a pace that works best for you.  I wrote once a week for the first 6 months, and I now try to write at least once a month, which feels much more sustainable - but if I wrote less than this, it would be easy to just forget to blog altogether.  
• Consider limiting your universe of topics.  I don't formally do this, but I have a limited range of things I like to write about (parenting / special needs parenting, faith, book reviews, opinion pieces, and very occasionally other stuff).  Sometimes having an unlimited choice of things to write about feels so overwhelming that you can't narrow it down to any one thing.  If you decide to dedicated your blog to a specific topic, like trying Pinterest projects, or analyzing current events, or updates on your child's first couple years - you can cut way down on time spent thinking of ideas and get right down to writing.  
• Post a link to your blog on Facebook / Twitter.  Blogs are a lot more fun when they are interactive, and people are much more likely to read your blog if you post it on Facebook.  Some people will stumble upon it other ways - RSS feed, cruising the blogosphere, regularly checking for updates - but you will get more readers, and more comments to respond to, if you put a link on social media.  

Erin's Blog:  3 Years in Review
Top 5 most read blogs:
1.  New diagnosis:  4q deletion syndrome
2.   Joshua age 5 Health Update
3.  Moving Back to the Biggest Little City and Virginia Beach Love
4.  G-Button Out!
5.  On Having a Special Needs Kid v. Medically Typical Kid

Top 5 blogs that generated the most back and forth with readers:
1.  My Thoughts on "Daring Greatly"
2.  Political Rant on Why We Shouldn't put type-of-food limits on Food Stamps  (this was a blog post that made me re-think the issue -- my heart still agrees with the argument I made, but my head knows I'm probably wrong, as I had many thoughtful friends on both sides of the political spectrum unanimously disagree with me)
3.  Ban Bossy?
4.  Raising Boys v. Girls:  The Toddler Edition
5.  Top 10 Reasons I love (but also sometimes hate) Facebook

My 5 personal favorites:
1.  An Advent Reflection
2.  On Being a Stay at Home mom with a Law Degree
3.  My Second Annual Thankfulness Post
4.  On Having a Special Needs Kid v. Medically Typical Kid
5.  On Half Marathoning:  to run or not to run

Thanks for reading!  Looking forward to writing many more posts, and hoping that a few of you will read this and decide to join the blogger train!

Books Worth Reading -- Dreamland: the true tale of America's opiate epidemic

In the three years I've been writing my blog, I've written a dozen book review blog posts, and they are always by far the least popular and least read posts of the year (unless I name drop Brene Brown in the Facebook tagline).  Nevertheless, I'm going to continue to write them for 2 reasons: 1)  Writing a book review is a fun way for me to think more carefully about a good book I just read (yes I did say "fun" - I'm awesome at parties), and 2)  I think good books deserve to be shouted from the rooftops, and no matter how tiny my contribution might be to that cause, I'm hoping that occasionally people will stumble across these blog posts and decide to read the books.  Today's book is "Dreamland:  The True Tale of America's Opiate Epidemic".

Summary of the book: 
This book, written by an investigative journalist, explores why heroin has made such a big comeback and hit new communities (especially predominantly white, mid-sized) so hard in the last 20 years.  The author explains that it was the convergence of these 3 factors:

1. A new kind of heroin dealer network: 
    - Dealers sold a newly developed type of heroin from Mexico that was much cheaper and more potent than heroin had ever been before.
    - Instead of operating out of a centralized house or neighborhood and threatening violence to people who opposed their territory, these dealers operated a non-violent, customer service based model - they would drive the drugs to you, pizza delivery style, and they wouldn't carry weapons.  This made the actual purchasing of drugs seem more accessible to a wider range of people.
    - They knew how to beat the police system (only carry a small amount of drugs, have a decentralized franchise system where no one has too much power anywhere up or down the chain, don't carry weapons - then busts aren't worth police time and energy).
    - They sought out communities where Oxycontin use was already big.

2. The "pain revolution" in the medical community -
            -In the last few decades, a new belief gained popularity in the medical community that doctors should be aggressively treating pain with narcotics,
            - This combined with the erroneous belief that Oxycontin is non-addictive for the vast majority of people, so doctors prescribed it freely.
            - The discovery that there was a huge profit to be made on Oxy, both in a "legal" way (pill mills where doctors would accept cash only and write prescriptions for hundreds of patients a day) and on the black market.

3. The close relationship between Oxy and heroin, which are both morphine-based.  Many people first started using morphine-based drugs through a pain pill prescription.  Through this, they developed an addiction.  When they could no longer get a prescription, and if Oxy got too expensive or too difficult to find, heroin was a good alternative for prescription pill addicts.  (They both satisfy the same addiction.)

These factors combined to bring heroin to mid-sized communities that had never had serious trouble with heroin abuse before, and it made black tar heroin overdoses a public health epidemic in these communities.

The most important thing I got from this book:

• I am still blown away by how much difference marketing and context can make.  I had no idea that heroin was so closely related to Oxycontin, a drug which Joshua has taken at least half a dozen times (as a baby!) while in the hospital for surgery.  I would make the same decisions for him because you need heavy duty pain relief after major surgery, but it's just interesting how something can seem so clearly good in one context (doctor prescribed in a medical facility for pain relief) and so clearly bad in another (bought illegally by a dealer in the street for an addiction), even though it's essentially the same drug.  
• I'm sure medical associations are way ahead of me on this observation, but certainly doctors are now thinking about the major risks before writing a script for narcotics that might eventually lead to a heroin addiction.  (And we as patients should also be weighing that risk before filling a script that might become addictive.)
• I've written before about mass incarceration and drug laws - it will be interesting to see the political implications as heroin and pain pill addicts are increasingly white, middle and upper class, and suburban / rural.  I think it would be great to see drug laws shift towards a more treatment focused approach for non-violent addicts, regardless of the racial composition of users.  
• It's interesting to think about what new strategies law enforcement can use as dealers are figuring out ways to decentralize their operation so nobody can get big-time busted.  

Two things I didn't like about this book:

• Repetitive:  this book was originally a series of articles, which the author eventually strung together as chapters and turned into a book.  Consequently, there were pieces of background information that must have been repeated at least 20-30 times - a more stringent edit could have cut down on the length substantially, but it's also easy enough to skim past repeat information.  
• Demonization of certain programs - this book criticizes Walmart and Medicaid for enabling users by providing broke addicts the financial means to score drugs.  And while each of these beheamoths certainly has its share of legit problems, I think it's really unfair to criticize an institution when it's actually individuals using the system illegally who are the problem.  In the case of Walmart, it was people stealing goods and then returning them easily, thanks to Walmart's liberal return policy, then using that money to buy drugs.  In the case of Medicaid, it was doctors helping people get qualified as disabled so that they could be Medicaid recipients, then prescribing drugs that Medicaid would pay for, and sometimes those drugs were then illegally dealt to others.  If doctors are wrongly helping people qualify for disability, or wrongly writing scripts, or if individuals are fradulently seeking these things out, or illegally selling their meds - none of these things are the fault of the insurance company.  

Other than those two things, I would recommend this book.  It's educational, it's got a true crime vibe (you get to see the inner workings of a drug ring!), and it's relevant to some of our major domestic issues (mass incarceration reform, the pain pill epidemic, the "war on drugs").

The Potty Training Post #noshame

I am right in the middle of potty training both children, so this subject is first and foremost on my brain.  First, a warning:  this is not a post for people who find the subject of potty training boring or gross, or both. (No judgment!  This was me a few years ago, and will hopefully be me again soon.)  This is a post to discuss 1) the pros and cons of late training (late = after they hit their 3rd birthday) with a non-special needs kid, and 2) a few thoughts on special needs potty training.

Pros / Cons of late training with a medically and developmentally typical kid:
Pros:

• When they finally go along with it (and that part took at least 6 months - see cons, below), they get it really fast - Zoey (mostly) got it in about 2 days, and from what i hear, this is not unusual for 3 year old trainees.  We are still doing some finishing touch training, but she is mostly done.  
• Their bodies are sufficiently grown that they can hold it for long stretches of time, not have many accidents, and be able to remember to go without a bunch of prompting from the parent.  Training at this age is child training rather than parent training (meaning, once they get the concept, they will remember to go on their own and not need the parent to keep track and check in with them every hour for the forseeable future), and that is a lovely thing.
• Diapers are just way more convenient than the early months and years of the potty trained.  If your kid needs a diaper change when you are in the middle of Costco, or you're finishing up a cooking project, or you're driving home - it can wait.  If your kid is not in a diaper, it can never wait, and this can sometimes be really difficult or even affect what you are willing to try to do (i'm not sure how we're going to do Tahoe beach days this summer, for example).  

Cons:

• The big and obvious con is the cost (financially and environmentally) of using diapers for extra months.  The sooner you can eliminate this cost, the better.
• The less obvious con is that if you wait until after age 3, your kid will be hitting an age of independence and verbal skill where they can resist whatever it is you want them to do with great passion and many words.  I imagine a 1 or 2 year old would be more cooperative because they haven't yet learned that they can fight back.  When potty training books suggest that you take your kid to the toilet every 30 minutes and be consistent about it, they are assuming that your kid has not yet hit the stage where they will enter into a 20 minute negotiation and/or a full meltdown of resistance.  The potty training difficulty at this age is mostly about getting them to cooperate, but that's a big thing.

For us, the determining factor on when to start was not anything on this pro / con list, but rather life circumstances.  If you have a lot going on in other parts of your life or you have a big transition coming up, you might just have to wait until the timing is better.  The reason we didn't start earlier with Zoey was because our life was in a constant state of transition and craziness during her 24th - 36th month of life: months of staying with family, 2 different major water leaks and contruction projects, and 2 house moves (one across the country).  So we waited until things calmed down, and by then we were dealing with the pros and cons of training a threenager.  

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Special needs training:

Special needs potty training is a whole different thing from developmentally typical potty training, and it's one of the most challenging developmental things we've faced.  All the potty training books seem to assume that a special needs child has just one challenge, most commonly that they are non-verbal or sensory sensitive or unable to walk - but the books don't contemplate that they might have multiple things going on, or might be showing some signs of readiness but not others.  Our biggest challenges were:  low muscle tone (which affects the ability to hold it and to feel when you have to go); sensory challenges (which affects so many things that i don't even know where to start); and strong resistance to change in routine.  It was such a relief to connect with other 4Q families and learn that, with Joshua's particular deletion, it was reasonable to expect training to happen between ages 4-6 (at the earliest).

Your plan of attack and age to start is going to depend completely on your child and their needs, but here are the best pieces of advice I received or learned through this process:

• Wait until they're ready, and by ready I mean:  1) they're showing most of the signs of readiness, 2) they're willing to cooperate with training at least some of the time, and 3) you're ready and able to help with the things that they can't do on their own.  I hate this advice every time I get it (they will discharge from NICU when they're ready!  They will start eating orally when they are ready!  etc!), but it is always very true.  At some point, we tried 4 days of underwear training with Joshua way before he was ready, and it was probably the most frustrating 4 days of all of our lives.  We had zero successes, dozens of accidents each day, lots of meltdowns, and lots of discouragement all around.  In hindsight, we could have seen within a few hours in underwear that he wasn't ready (wasn't interested, wasn't noticing or giving any signals before he had to go, wasn't able to hold it, etc.), and we should have halted it then.  And that's what we did going forward - we would try an underwear day every few months to gauge where he was at, and go quickly back to diapers if there were no signs of readiness.  If you push them too hard before they are ready, it can create a negative association with the bathroom and make it even harder for everyone.  
• Don't listen to those books claiming that any child, no matter what the extent of their special needs, can be trained in a week.  Like so many things in the special needs world, I think potty training happens on a spectrum - some will train quickly, some won't be able to train at all, and others will train but on a slower timeline.  Because many special needs kids are going to need longer than a week to train, it's best to be prepared and have strategies or compromises in place. For example, even after you've switched to underwear at home, you might need to keep diapers and pull-ups on hand for outings, even if they are just to go over the underwear.  [Note:  all the books advise against this, so this might be really bad advice, but I think you need to trust your instincts, do what works best for your whole family, and recognize that you're living in the real world and not in the fantasy potty training book world -- there are some places where it just won't work that well to risk having an accident, and you might not be able to avoid all these places for months at a time.]  Also, knowing from the beginning that it might take many months helps the parents to not feel discouraged as things move along in fits and starts.  
• Try not to get hung up on things like how old your child is.  (This was a hard one for me!)  They will get there when they get there.  Public schools have to accomodate for toileting needs if your child is on an IEP, and many other places will accomodate if you are willing to work with them (like church nurseries).
• But do find ways to keep potty training in the mix in as many low pressure ways as you can.  We checked out every children's book on potty training that the Virginia Beach and then the Reno libraries had, and we tried to read them often.  We kept the potty chair out and would suggest trying before bath, because that seemed to be a time he liked to try it.  We have a picture chart on the wall of the different steps in the toileting process.  We talked about it frequently -- basically, the same strategies that parents use with typical kids, but for years rather than weeks.  
• For us, it was really helpful to get other people involved in the training.  Specifically, Joshua's preschool teacher developed a routine of having him try the bathroom every day, and it took about 6 months to see any success with this, but the school training caused the break-through - he started having success at school before he had success at home, and now he is having lots of success in both places.  Both parents and all grandparents are also helping in the effort, and it seems to help to have encouragement from many sources.  

Our day training is not fully done yet (and I haven't even started to think about night training), but we are making really good forward progress after waiting years to see any progress in this area.  Thank you to those of you who have listened to me moan, and given prayers and encouraging words towards this effort!  What other good tips have you heard / learned?

Amusing Ourselves to Death

[Prologue:  I don't know why this year's blog posts seem to be gravitating towards an anti-Facebook theme since I am a big fan of Facebook and use it every single day -- this will be the last one of this genre for awhile.]

I just read Amusing Ourselves to Death:  Public Discourse in the Age of Show Business by Neil Postman, and this book has tons of great food for thought in our Internet age.  Postman's main idea is this:  "Every medium of communication [ie books, photographs, television, Internet]...has resonance...Because of the way it directs us to organize our minds and integrate our experience of the world, it imposes itself on our consciousness and social institutions in myriad forms.  It sometimes has the power to become implicated in our concepts of piety, or goodness, or beauty.  And it is always implicated in the ways we define and regulate our ideas of truth."  Postman is not so much concerned with junk culture - the shows we watch (or the websites we view) just for fun.  He's concerned about serious cultural discussions happening on mediums that were built for entertainment, especially in the categories of politics, education, religion, and journalism.  (In his view, shows like Sesame Street and Dateline NBC are far more dangerous than shows like Reno 911 - and if this boggles your mind, then you should check out his book.)

This book was written in 1985 and was intended to criticize the cultural dominance of television, but the ideas apply just as strongly in 2016 to our Internet / social media dominated age.  This blog post has some thoughts, inspired by Postman's book, about what the Internet / social media as our dominant cultural medium is doing to influence politics, religion, and journalism.

Politics:

• Political debates:  In the olden days before television, each candidate would get to answer each question for more than 20 minutes without interruption.  The entire debate would sometimes last seven hours.  Now candidates are lucky to get 30 seconds, with interruptions from other candidates and moderators.   In this environment, the person who wins the debate is the person who gets the best zinger or sound bite.  This has been true for decades, ever since debates have been televised -- but what a difference in content, context, and depth of information can be conveyed in 20 minutes versus 20 seconds.  Do you know who can deliver a great zinger?  Donald Trump.
• On social media, political opinions often get conveyed in the following forms:
• A catchy meme that may or may not contain factually accurate information.
• Angry / aggressive ranting posts that might be long on emotion and short on truth. 
• Even when posts and memes are 100% accurate, because they are so short, they often cannot be contextualized in any meaningful way.
• People can comment on all these things - so even if the original post was truthful, well-reasoned, and put in a proper context, commenters can easily hijack the originally intended thought and turn it into a space for angry debate.
• On the plus side, it's much easier to fact check when people are lying thanks to the Internet.   So candidates on all sides are less able to get away with lying and no one calling them out.  However, there's such a glut of information all the time that people may not notice a politician lying, since it's just one of the thousand items that pops up in their newsfeed that morning.   

Religion:  I have found the Internet to be a helpful source of spiritual encouragement, whether it's the ability to look up Bible verses on my phone, or text /email / Facebook prayer requests to and from friends, or to spend 5 free minutes reading an encouraging Christian living article.  But there are some criticisms about the Internet and social media as the medium for religious conversation:

• On the Internet, religion is taken out of its sacred context - it's great to be able to read the Bible on your phone, but then you get an alert that you got a new email / text / Facebook notification and you click over (or you don't click over, but in the back of your mind you're wondering what the notification could be), and then you read a couple more verses, and then another notification - it changes the experience entirely.  It's certainly better than nothing, but it can be a mentally fragmented experience, like so much of Internet browsing.    
• Christian articles posted on Facebook - again, they can be a source of encouragement, but how  often do we choose to read one paragraph of a 5 paragraph article before our short attention spans demand something else, and we maybe end up missing the whole point?  This type of reading is typical on the Internet (at least for me), but is very unusual if you sit down and read a book.
• Postman's book describes how we all need to be amused because this is the expectation that television creates, and I think that's even more true (combined with short attention spans) in the Internet age -- how difficult does that make the job of pastors?  This might be part of why so many churches use fancy audio-visuals and other flashy attention-keeping devices during sermons - because we are a culture that can't pay attention without some help, and without worship services being entertaining.  (Although millenials are rebelling against the entertainment-driven worship service, so maybe we will see this trend changing.)

Journalism:

• The news cycle more than ever prioritizes speed and sensationalism over depth / context / relevance / truth.  Facebook's "Now Trending" sidebar is the perfect place to look for examples of everything that's wrong with the current news - it glorifies nasty celebrity gossip, horrific crimes against children, and meaningless pieces of trivia that have absolutely nothing to do with your life or anything of importance in the world.  
• News agencies post articles that are click and comment bait - they find a topic that provokes or enchants and causes people to open the article, which often has zero overlap with the content that people most need to hear in order to be well-informed citizens.

This post has gone on long enough, but the really encouraging thing I took from Postman's book (as someone who has no intention of quitting Facebook) is this:  just knowing that you need to think critically about the effect that a medium has on serious cultural discussions does a lot to counter the harmful effects of that medium.  So for me, i'm going to re-double my efforts to scroll past political discussions (which are always extremely tempting to me) and focus on cute family pictures.

The other thing you can do, if this set of ideas has really rubbed you the wrong way, is to start a Facebook page based on Postman's book and post sentences from the book, totally out of context, in the form of memes.

Books I read in 2015

This is my annual year end book blog!  I like to mix it up by posting the year end list in January.  And by mix it up, I mean post it when I finally get around to writing it.  Here's a picture of the books I read last year, courtesy of Goodreads, and I will list my Top Fives below.  (I'm sorry some of the books overlap - I'm not sure how to fix that.  Here is the link to Goodreads if you would like to click on any of the books to get a summary, reviews, etc.)

it was amazing

it was amazing

really liked it

it was amazing

really liked it

Top 5 fiction books (in random order):
Me Before You  by Jojo Moyes
Kitchens of the Great Midwest by J. Ryan Stradal
Fates and Furies by Lauren Groff
All the Light We Cannot See by Anthony Doerr
Mambo in Chinatown by Jean Kwok

Top 10 non-fiction (in random order):
Being Mortal by Atul Gawande
The Empathy Exams by Leslie Jamison
To the End of June by Chris Beam
Deep Down Dark by Hector Tobar
Just Mercy by Bryan Stevenson
All Joy and No Fun by Jennifer Senior
Girl in Glass by Deanna Fei
Dead Wake by Erik Larson
At Home by Bill Bryson

Please send me your fiction recommendations:  This was a year where I enjoyed non-fiction much more than fiction, which might have just been the selection I read.  It is usually the other way around - I read fiction because I love it and (mostly) read non-fiction to try to learn something or broaden my horizons.  I'm going to be SO SAD if my love of fiction doesn't come back with a vengeance.  Please send me your best recommendations of fiction books you absolutely loved and help me love fiction again!

This year's fun coincidences:  When you read a fiction book and non-fiction book on similar topics at the same time, they complement nicely.  This year's two pairings like this: First, I read Orphan Train (a historical fiction book about orphans / adoption of older children) and To the End of June (a non-fiction book about the American foster care system).  Second, I read Me Before You (a fiction book about a man making end of life decisions) and Being Mortal (a non-fiction book that discusses issues related to end of life care).  The non-fiction book educates you about the facts, gives a fuller picture of all the most important points to be made in the given topic, and just generally gives you knowledge and piques your interest in the topic.  The fiction book humanizes a topic and helps you empathize with the characters who are going through the real thing.  When you get both of these at the same time, it creates a really rich, powerful experience of the topic.  Both of the times it happened for me this last year were coincidental, but I'm going to try to plan to read like this more often.  (And I would welcome recommendations of good fiction - non-fiction pairings.)  (If any of you read To the End of June, which is excellent, and want a great fiction book to pair with it, I would recommend either The Language of Flowers or White Oleander.)

Josh Brain MRI

Josh is getting a brain and spine MRI tomorrow.  This is the first time he's had imaging done on his brain, so we would appreciate prayers for normal results.  This might seem a little out of the blue for those of you who have been following his health and saw my recent post about how well he's doing.  He's still doing well - this is just a check - but here's a quick post with an explanation of why they're doing the test and why it hasn't been done before.

Why he needs it:
Josh saw a neurologist this fall for the first time since getting his 4Q deletion diagnosis last year.  The neurologist thought it would be a good idea to check out J's brain, since kids with chromosome disorders are more likely to be born with structural brain differences, and if he has any differences, it would help us to know what to watch for and how to treat problems in the future.  This is just a check - the doctor does not expect to find any particular problem.

Why he hasn't had it before:
The idea of a brain MRI was first floated when Josh was a baby, because J experienced low oxygen levels for a month between the time when he got discharged from the NICU and the time when he had his first post-hospital sleep study and got prescribed home oxygen.  (Don't even get me started on how the discharging hospital let us go home with J still experiencing serious oxygen problems, because there is literally nothing that makes me more angry.)  The neurologist wanted to check for problems related to the low oxygen month, but they couldn't check it in that first year because Josh had metal in his jaw from the jaw distraction surgery.  (And as anyone who has watched lots of House episodes knows, metal and MRI machines do not mix well.)  He got the metal devices removed from his jaw around his first birthday, but by then we had moved to Virginia, changed doctors, and the idea got put on the back-burner (and thankfully stayed on the backburner because his development continued to progress).  But then we moved back to Reno, re-established with a neurologist, and the idea got moved back up to the front-burner.

I will write another post if there are any results to report.  Thanks for prayers!

(The Infamous) Facebook Break

This is me!

I took a break from Facebook for a month.  (I know this is an annoying thing to do, and an even more annoying thing to make a big deal about - #sorrynotsorry.)  Now I'm back on, but for those who are curious what it's like to take a short break from Facebook (and who haven't burned out from reading the thousands of articles available about others who have done the same), here's what it was like for me.

Why i took a break:  I had been thinking about taking a break from Facebook in the fall so that I could focus on Advent and Christmas without so much distraction and irritation clogging my brain all the time.  I never intended to stay off Facebook for more than a few weeks - there are too many things I value about it to stay away forever.  I just wanted to see what it would do for my thoughts, feelings, and attention span to stay away for a month.  I also just wanted to see if I could do it - like any good addict, i thought that I could quit Facebook at any time, but the proof is in the pudding.  So I temporarily "quit" Facebook  for 4 weeks from mid-November to mid-December.

What i missed:  

• I've read some articles where people quit Facebook and loved it.  That's not how it was for me at all.  I missed pretty much everything that was posted related to individual people:  learning about my friends' happy events where i can celebrate with you (births, moves, etc.) or hard events where i can pray for you (hospital stays, death of a loved one).  I missed seeing the small personal moments too (I love the days when my newsfeed is filled with kids' Halloween costume pics, for example).  
• Being able to connect with my special needs friends for practical questions and emotional support.  
• Funny statuses, memes, and hashtags.

What i didn't miss:

• Buzzfeed 
• Aggressively / argumentatively stated political opinions, even those i agree with.  
• The silly outrage of the day (ie the Starbucks red cups) - knowing what it was, forming and sometimes stating an opinion about it, knowing everyone else's opinion about it.
• For serious current events - getting so involved in how people were responding to the event that you start to care more about how people respond than the event itself.  
• Anything that is factually incorrect and can be verified or falsified by a 30 second Google search.  
• How Facebook can make your place in the world feel disproportionately big: like it's really important that everyone knows what you think about everything all the time, like you're really important if you get enough likes, like it's extremely important that you don't miss liking other people's posts.
• How Facebook can make your world feel disproportionately small: whatever it is that you feel like you're missing in your life (that perfect relationship / career promotion / exotic vacation / dream house / a child / a busy and fulfilling social life), you can find someone on Facebook who seems to have that thing in spades, and it can make you focus on that and forget about all the good things you have in your life.  
• I didn't miss my brain defaulting to checking Facebook everytime there was a free moment (it took a week for this impulse to diminish - it never completely went away).  I certainly didn't spend every moment that used to be spent on Facebook doing something really worthwhile or pondering really deep thoughts - but I did feel like my mind was a little less distracted, like there were less metaphorical browser windows open in my brain - so when things did come up where I wanted to be present / pay attention, i was able to do so more easily without having to step aside from so much distraction in my brain.  It was only a marginal difference, but in our culture, where there is so much distraction around you all the time, even a marginal difference has an impact.

What changes I will make:

• Regular, short breaks of 1-4 weeks everytime Facebook starts to feel agitating or like it's taking too much time in my day or space in my head.  
• Ruthless blocking / hiding / unfollowing of sites regularly posting things that are worthless, or antagonistic / polarizing / negative without some kind of redeeming value.

In conclusion:
For me, a Facebook break is kind of like camping:  it's nice to take some time away - it's refreshing and it clears your head - but by the end you can't wait to get back.

Adult coloring: like Minesweeper, but no computer needed.

P.S.  If you decide to take a Facebook break and are looking for a different way to take short mental breaks that can be interrupted at a moment's notice, may I suggest adult coloring books.  Seriously.

P.P.S.  In the absence of Facebook, I spent a little more time on two other social media sites - Instagram and Pinterest.  Instagram was great - it has most of the good of Facebook and none of the bad - but 90% of my Facebook friends don't do Instagram, so ultimately it's not a good substitute.  Pinterest is a different kind of site than Facebook, and while it's helpful when searching for a particular thing, it's a terrible place to spend time browsing (unless you enjoy dwelling on your lack of six pack abs, daily craft projects for the kids, and perfectly decorated /spotless/ DIY-project-laden house).  (This is the best Pinterest take down ever.)