My Thoughts on Genetic Editing

In the news this week: scientists have made a major advance towards editing baby's genes in utero in order to prevent genetic diseases.  As someone whose child has a genetic disorder, I have some thoughts on this.

My first instinct is that we shouldn't be messing with genes because:

1.  Can the scientists get it right?  Some of us won't even eat a vegetable that's been genetically modified for fear that messing with the plant's genes is going to cause negative consequences.  (By the way, I'm in favor of genetically modified food, but that's a discussion for a different post.)  If we can't trust scientists to modify our food, then why in the world would we trust them to modify our *babies*?  From the article, it looks like the method they have developed involves cutting out the genes that carry diseases and then hoping that the body grows healthy genes in its place.  I'm no scientist, but that seems to leave some very significant room for error.  And while genetics is getting more advanced all the time, (my understanding is that) the precision with which bodies operate using DNA far outpaces our human understanding of how all this works.  So the pieces of DNA that get cut out could very likely be too big, too small, cutting out some of the essential with some of the faulty, etc.  

2.  What kind of Pandora's Box is this opening?  If you can modify genes to help prevent diseases, you can also modify genes to choose gender, skin color, intelligence - anything about the body.  Are we okay with messing with any of this?  Doesn't this sound a lot like eugenics?  Doesn't this also sound a little Tower of Babel-esque?

3.  Even if it can be limited only to preventing genetic diseases, and can be done 100% correctly, should it be done?

This is the trickiest question, I think.    On one hand:  As a person of faith, I think that God is good and God is sovereign, and that He created this diversity of abilities for a good reason.  I don't fully understand it, but I trust that God knows better than I do, and that there are good reasons for all the beautiful diversity in the world, including genetic diversity.  

On the other hand...I'm glad that I will never have to make this choice about gene editing, because while I do feel like it's a bad idea for all the reasons listed above, it would be excruciating and nearly impossible to decline that choice as the parent, at the beginning of a difficult medical journey.  I love Joshua fiercely, exactly as he is, and I have learned a ton and grown as a person and met some wonderful friends because of his disability -- but despite all that, if someone handed me the "keys to the kingdom" of his DNA that would allow me to fix the missing pieces that have caused all the surgeries, all the medical ups and downs, all the developmental difficulties - it would be so hard not to accept that.  Because the world is built for medically and developmentally typical people, and Joshua's life (especially those first years) would just be easier if he was "typical".  And there are other kids whose genetic condition has impacted them much more severely, including some whose conditions are not compatible with life - when you think about these cases, the analysis doesn't seem so clear cut.  It raises an interesting ethical question about why is this different from other cutting edge medical technology that can prolong life, why is this the appropriate place to draw the line?  Why wouldn't we want to help children have more years of life and less pain?

  As always, I'm interested to hear my friends thoughts, and I ask people to please be gentle and respectful in the comments.  

What will I do with all my time?

This is my attempt to be funny.

When people hear that Zoey's starting kindergarten this fall, meaning two of my three kids will be enrolled in full time school, the first question is, "what are you going to do with all your time?"  (I'm not referring to any one person - this has been asked by pretty much everyone I've talked to about it.)  I know that it's meant somewhat rhetorically, in contrast to what life is like with all 3 kids at home.  But I have a blog, so here's the answer!

First, because apparently I'm feeling defensive (and writing on behalf of all stay at home parents with some of their kids in school), I'm going to relativize "all that time":

• 180 days of the year are school days, so the other 185 days of the year, all 3 kids are at home.
• On those school days, the early mornings and then afternoon / evenings are the craziness of a 3 kid family, and those times right before and right after school are much crazier because of school.  (When it was just Josh in school, I actually preferred the days off of school, not just because I like spending time with him, but because they are easier.  There's lots of hustle and bustle that goes with school, as well as rough transition times.)
• The special needs tasks continue, which include one or more appointments per week, and miscellaneous things like gathering paperwork for insurance, extra communicating with the school, ordering and picking up meds, and researching something or other.
• Some of the volume of work throughout the day (laundry / dishes / cleaning, grocery shopping / cooking, errands, shuttling to activities) is still that of 3 kids.  
• And oh yes, the main thing: there is still a beautiful and darling 10 month old at home full time who keeps me on my toes at all moments that she's awake.

More jokes

But - and I think this is what the question is getting at - for the first time in a very long time, I do have regular stretches of the day where one kid is napping and the other two kids are in school, and I do get to CHOOSE what to do with that time.  Here's what I'm hoping and planning for that time to look like:

• The thing I *really* want to do is start running again and maybe train for a half marathon in the spring.  If I can add in this one thing 3-4 times a week, I will be so happy.  Then, as time allows, I will also try to do some of these other things:
• Take a Coursera course
• Nap
• Enjoy some of the things I already do, but without constant interruption
• Quiet times
• Reading for fun
• Talking to my sister on the phone
• Blog

And the hours where Ivy is awake but it's just her and me will also be different.  There are tons of things that are easier with just one kid in tow: taking the dog for walks, going to coffee shops, running errands.  I'll be able to take her to stuff that the big kids have mostly aged out of - like toddler time at the library, toddler area at the Children's museum - and then not feel guilty as she gets dragged to all the bigs' activities on nights and weekends.

Cant' stop won't stop

It will be interesting to see what Ivy's experience is like as both of her big siblings start school.  Josh's and Zoey's early years were so intertwined, and for them that was great (although certainly there were moments that would have been easier for me with only one, or nice for them to get more of my individual attention).  Ivy loves having her siblings around and she appears to be the most extroverted member of our family, so I think she will miss having them around during the day.  But she is adaptable, she will get plenty of my attention, we will stay involved in our play group, and she will have her siblings around some of the time - so I think it will be good.

Those of you with kid(s) in school and also kid(s) at home - especially those with an age gap of 3 years or more - I would be interested in any advice you have!

P.S.  Since I'm on the topic of this being a transitional time:  will I ever go back to work?  Yes, probably.  I'm not sure exactly when or what that will look like, but I would like to be a practicing lawyer again someday.  But for the next few years, I'm still feeling this way with Ivy.

4th of July and LBJ

Kenny and I visited Austin last week, and as part of our trip, we toured the Lyndon B. Johnson presidential library.  It was inspiring to see LBJ's massive list of legislative accomplishments - the "War on Poverty".  Since this week is a celebration of America, and since many of us are discouraged about what's going on with national politics right now, I wanted to share some of my thoughts that came from walking through this museum.  

LBJ's inaugural speech depicts an America which is already great, and which is greater still when it lifts everyone up:

"In a land of great wealth, families must not live in hopeless poverty. In a land rich in harvest, children just must not go hungry. In a land of healing miracles, neighbors must not suffer and die untended. In a great land of learning and scholars, young people must be taught to read and write."

Based on this vision, one that's rooted in hope rather than fear, LBJ pushed through a staggering list of anti-poverty programs, civil rights laws, and other huge contributions to our society.  I will list just a few highlights - the full list of 100+ laws is here:

• Clean Air Act
• Civil Rights Act and Voting Rights Act
• Medicaid, Medicare, Food Stamps, HUD
• Free School Breakfast and Lunch, Head Start, federal funding for all levels of education (including college)
• Created PBS, NPR, and NASA
• Public safety acts that made cars and highways safer

So what does this mean for us now?  Our country's current leadership seems locked in extreme partisanship and is led by a man whose domestic agenda is exactly the opposite of all this.  What relevance does a president from 50 years ago have to modern day?

What it means to me is that America's leadership has not always been this way and will not always be this way.  Do you think our great grandparents, pre-FDR, could imagine a country where the federal government helped pay for health care, housing, food, and higher education for those who who could not afford it?  Where we had rigorous (if not perfect) environmental and safety standards, and excellent publicly funded news sources?  Where human beings of every race were guaranteed some basic civil rights?  Just 100 years ago, all of these things were unimaginable, and now we have all of them.  There's great debate about whether these programs should be bigger or smaller; repealed or improved or stay exactly the same.  But the fact remains that we have a public safety net for our most vulnerable citizens and legislation guaranteeing certain human rights, which would have seemed like a pie in the sky dream 100 years ago.  

I do not mean to suggest that we should put any ultimate hope in politics or politicians, as I think this will always disappoint.  I also do not mean to make light of the dramatic impact that a particular law change can have on a particular family, and I intend to keep posting / calling / waving my fist on behalf of these things.  But I do think it's worthwhile to contextualize this particular moment of America's history.  

We've had ups and downs in the 231 years since the Declaration of Independence was signed.  This current administration is the pendulum swinging away from LBJ's vision, but it will eventually swing back.  In the meantime, those of us who agree with robust federal programs to support anti-poverty initiatives, civil rights, education, public safety, and the environment can keep voting, making phone calls, and otherwise making our voices heard.  We still live in a free country where we can make our protests, where transitions of power happen peacefully - there is so much to be thankful for.


I will end with this very famous quote from the Declaration of Independence, which we celebrate today and which is on point with the vision of America that I saw in the LBJ museum.  Happy Independence day, America!  

Extreme World Poverty: Violence

This post is a book review of "The Locust Effect: Why the End of Poverty Requires the End of Violence" by Gary Haugen and Victor Boutros.  This is the second book review blog in a series exploring extreme world poverty.  My purpose in writing these book reviews is not to give a comprehensive synopsis or critique of the book, but to try to pass along the information that is most relevant to those wanting to help with these issues.  But if the issue of violence towards the poor grabs you, then I would highly recommend reading this book. 

What's the book about?
Violence towards the poor (especially towards women, especially sexual violence) is one of the most pressing problems that needs to be solved to help those living in extreme poverty.  There are 4 big categories of violence that need to be addressed:  1) sexual violence (rape), 2) sexual violence as a business (prostitution and trafficking), 3) forced labor / slavery, and 4) violent land seizures.  In many developing countries, there is not an effective public law and order system to protect the poor - so even though there are criminal laws against violence and forced prostitution, the police are not protecting the poor and lawyers are not prosecuting on behalf of poor victims, so criminals can act without consequence.  In many places, not only are the police failing to protect the poor, but they are victimizing the poor in order to help the powerful.  This affects all kinds of things (it's a leading reason why girls in developing countries stop going to school, for example).  This also means that the billions of dollars of aid flowing in for things like hunger, education, and public health cannot be nearly as effective in lifting people out of poverty.  

What things would help most with violence towards the poor now?

• Tie development dollars to a commitment by the receiving country to transform criminal justice systems so that they also work for the poor.  Unless the country is committed to change, money will not help with criminal justice reform, and will not be as effective in addressing other problems.  
• Support local leaders who are making an intentional effort to transform their justice system.  
• Criminal justice reform is not an issue that can be fixed quickly and easily with an infusion of money and a short burst of outside support - it will take time and commitment to oppose a system that has been in place for hundreds of years, and that continues to benefit rich and powerful people.  
• The solutions will be different in each place, and will depend on the existing culture and existing strengths and weaknesses of the system - locals are best suited to understand these dynamics.  
• Certain individuals are key - Journalists, pastors, and advocacy groups can help tell the shocking stories of violence; and local businesses leaders can choose to support reform rather than the status quo.
• Improve the working conditions of the people working in the system.  The judges, the police, the social workers - pay them well, train them well, give them humane working conditions.  Give them the equipment and manpower they need to do their jobs well.  
• The two goals when transforming a criminal justice system should be 1) prevent crime, and 2) build trust with the public.  Law and order won't work well to prevent crime without the public believing that it works well, and generally acting accordingly.  
• One way you can build public trust is to fight corruption within the criminal justice system - prosecute and/or fire corrupt officials.  
• A second way is to fight crime effectively, and then do a media campaign to advertise this.

Haugen made these 3 suggestions in his conclusion:
1) Talk about it - all conversations about global poverty should include addressing violence.
2) Bring law enforcement expertise to the table - development groups and human rights groups do not traditionally work with law enforcement experts, but this will need to change if we want criminal justice systems to transform.  
3) Start by funding projects in more stable countries where reforms are likely to work more quickly - successful reform projects will create hope, will make limited dollars work most effectively, and will help reformers learn lessons as they move on to more difficult countries.

What organization is helping?
International Justice Mission

Other:   If you work in the criminal justice system, then this book will make you appreciate how well the United States criminal justice system (for all its flaws) is currently working.  When you read about problems like people being pre-trial detained for longer than the maximum sentence of the crime for which they are accused; or courts shutting down for weeks each month because they have run out of paper and can't conduct their business; or a court system that operates in English, despite less than 1% of the population speaking English, so not only the victims and accused but also the lawyers and judges can't understand key parts of the proceedings - it boggles the mind.  

Thoughts on Marriage, 11 Years In

Celebrating our first anniversary!

Kenny and I are celebrating 11 years of marriage this week!  I don't blog (or even Facebook) about marriage that much because, although I have a great partner, it's the area of my life more than any other that I am still figuring out and that I feel least worthy of giving advice and reflections.  But, eleven years into matrimony, and smack in the middle of the time of life where both career and family life are extremely busy, these are the tips that feel most helpful (some given from others, some learned the hard way, some still very much being learned):

• Effort is huge - None of us can be perfect for our partners, and none of us should expect perfection from our partners - but it means so much when you can see that they are trying.  Trying to work on weaknesses, trying to think about what your partner wants when it's always easier to think first about what you want, etc.  I think it also makes you feel more invested in the marriage when you are choosing to make an effort.  

• Communication is huge - If this was an easy one to summarize (or to execute), then there would be very little need for marriage counselors, marriage books, etc.  And I am especially still a work in progress in this area.  But here's a small piece of the communication puzzle that's helpful to me:  don't let things like worries and annoyances build into a huge mountain in your head without talking about them.  Some things are easier to solve than others, but your partner doesn't even get the chance to offer his or her perspective, or try to change, or offer reassurance - unless the thing gets communicated in the first place.  I like to keep smooth waters above all else, so this is hard for me, but it's so important.  

• Don't compare; figure out what works for you - Have you ever had the experience where you were happy with some area of your life (it could be anything - your career, your vacation plans, your hairstyle of the day), and then you get on Facebook and see someone who's (allegedly) killing it in that area and suddenly you feel envious?  Or they are doing things differently, and it makes you feel inadequate?  If you are happy with how things are going in your relationship, don't worry about what's going on with other people.  ESPECIALLY don't worry about it as portrayed in the glossy perfection of social media.  

• Small things add up - In this stage of babies and career building and life is busy, the small things really matter - things like saying thank you, offering even short breaks from the kids (thank you Kenny!!), sending a quick text or email to show you're thinking of the other person - it's great to do them, and it's great to appreciate when the other person does them.  And this is hard, but it's good to try to remember that if a person does something every single time (like make the coffee, or pay the water bill) - that's reason to be all the more grateful, not to take it for granted.

• Manage expectations.  Are you exhausted?  So is your partner.  Cut each other some slack.  Many nights are going to look like crashing together in front of the TV rather than deep, hours long conversations.  

• But don't forget each other altogether.  Do remember that your couplehood existed before kids, and the hope is that it will continue to exist after the kids grow up, so it is vital to keep feeding into it as much as you possibly can.  Regular dates are super helpful - I know this advice is grating when you would love nothing more than a night out on the town sans kids, but it's not possible to actually get out of the house due to budget constraints and lack of babysitting / respite - as long as you're finding regular time to connect without the kids in your face, it doesn't have to look like dinner and a movie.  But if there are things you can do to facilitate the possibility of more dates (such as babysitting swap, move closer to family, restructure budget, etc.), I think they are a worthwhile investment in keeping the marriage strong.   

• Take opportunities to celebrate.  If you are married with kids, life can feel like a non-stop barrage of occasions that have to be celebrated, between birthdays and anniversary and the various holidays.  Appreciate them for the blessings they are.  It doesn't have to look like a bunch of money spent for diamond jewelry and a 5 course meal, but find ways to make the occasions special.  When I think back to my childhood, so many of my best memories are from things like birthdays, holidays, and vacations - it's harder when you're the adult, because you're the one in charge of making it special - but these milestone markers continue to be the days that generate the best memories.  

I would love to hear others weigh in on the best marriage advice you have received.  Especially from those who have been married for decades - what wisdom can you impart?  

Kindergarten: A Year in Review and A Year in Preview

Josh:  First Year of Mainstream!

Josh is about to finish his first year of kindergarten!  I'm so proud of him for making it through the year.  Although this is his fourth year in public school (after 3 years of special education preschool), this first year of a mainstream classroom setting definitely ramped up the intensity of the school experience.  Here's how it went:

The good:  In most ways, he really rose to the challenge.  He can now sight read several dozen words, his drawing skills are getting very good, and he comes home with all sorts of interesting facts about animals and storms and whatever else his class is studying.  His speech and social skills are improving and he made some friends (although kindergarten friendships seem to change from week to week, and that was sometimes a challenge - but I think that's a challenge for all kids).  (Also, on the topic of friendship -- there is one boy in the class who regularly makes extra efforts to include those who might need an invitation, and that is a really helpful thing.  I mention this because 1) it is an answer to prayer, and 2) THANK YOU to those of you who raise your kids to be includers.)  He is (mostly) following directions and meeting the behavioral expectations of the classroom.  When I think back to the hard parts of his early childhood - particularly the month when we got his genetic diagnosis and read the report of some of the severe limitations he might face - it thrills me to see where he's at now.  What a remarkable blessing.

The difficult:  J is having to work hard to keep up with his peers.  Everything that is expected in school - holding a pencil with a correct grip, looking people in the eye, transitioning quickly and smoothly from one thing to the next, and everything else - is more of a challenge for him.  There have been many mornings where it's been extremely hard to get him out the door because it's so much easier for him to stay home, where he can do what he wants to do and where we have things set up in a way that's more comfortable for him - and these difficult morning transitions are hard on all of us.  It's made me wonder, at times: should we homeschool?  Do we need to get more accommodations or services in place, or a different classroom setting?  We've decided to keep him where he is for now, because we're seeing so much good progress and because he always seems to be happy at the end of the day (and anytime we pick him up in the middle as well) so it really might just be a transition thing.

[Note:  This highlights a struggle that all special needs parents have -- how to balance your child's comfort and happiness with helping them grow and progress, in light of their disability.  This affects so many things -- how you set up school, how you set up the home routine, how many therapies you attend and home exercises you do, whether and how you do discipline, and how much you design the rest of the family's life around all these decisions.  There's no right answer, and every family has to do what works best for them and their child, but there's the constant wondering of whether you should be doing more or less, and how that would affect your child, and guilt either way (for pushing too hard or for not pushing hard enough).]

Overall, I would call the kindergarten year a success.  I'm so, so proud of Joshua for pushing through on those hard morning transitions and for learning and growing so much.  And I'm more than a little relieved that we have a solid 2 months of down time coming up for all of us to catch a breath :).

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Zoey:  To Redshirt or Not?

Since Zoey turns 5 this August, we are planning to start her in kindergarten this coming fall.  I blogged last year about how it was hard to prepare to send Josh to kindergarten.  With Zoey, I'm having the struggle to let go for much more typical reasons:  how did she get to be school aged so fast?  Is she ready for all day school?  Am I ready for her to be in all day school?

Among the group of us who have kids with summer birthdays and the privileged circumstances to be able to choose whether to send them to kindergarten as a young 5 year old or a young 6 year old, many opt to wait the extra year.  Some research supports redshirting.  Some research shows that it might be beneficial to be one of the young ones.  And yet more research shows that there is no effect beyond 3rd grade, either positive or negative, of waiting until age 6 to start kids in school, with the exception of varsity football.  (I also want to mention that two of my best friends have August birthdays and their parents both started them on the young side, and they both had extremely successful academic performances and have gone on to stellar careers.)

What all this tells me is that you should follow your gut as to what's best for your child, and you probably won't go wrong.  We are leaning towards starting Zoey because she is eager to go to school, she loves to learn and do projects, she is able to sit still and follow directions, and she's academically ready.  She prefers being around older peers rather than younger peers, and she rises to academic challenges.  I'm hesitant because she's shy and her speech is sometimes difficult to understand, but I think her shyness is a function of personality rather than development, and being in school is the best way to work on social skills.  She already receives speech therapy to work on articulation, and will likely qualify for more minutes per week once she is enrolled in school.

I'm nervous about sending my sweet girl off to school, but it helps a LOT that I know exactly what kindergarten consists of, and what her teacher and classroom and school are like (since Josh just went through the very same program).

As always, I'm interested to hear people's thoughts about any of this long, rambling post!

Special Needs Thank you post

We've had lots of stuff going on with Joshua this week, and almost all of the interactions with the various providers have been really good.  It doesn't magically solve everything, but it makes a huge difference when you can see that people 1) care and 2) are doing their best.  I know that I have a tendency to jump on social media and complain if something goes wrong, so this is my attempt to do the opposite - to jump online and show some gratitude.  So here's my list of special needs thank yous:

• To the pediatrician who does 10 times as much work for my special needs kid as compared to your typical patients in referrals and phone calls and questions, most of it unpaid...thank you.
• To the nurse who goes the extra mile in making sure my child is physically and emotionally comfortable, whether he's doing an office well-check or an in-patient hospital stay...thank you.
• To the taxpayers who help fund my child's supplemental health insurance and school services, and to those who vote for these programs to stay strong...thank you.
• To the teachers who give extra help and extra care to my son, beyond what's strictly required in his IEP...thank you.
• To the principals and school psychologists and other school team members who actively seek out ways to help my kid rather than just trying to save the school district money...thank you.
• To the pediatric specialist doctors who have a real conversation with the parents, and who have taken on their specialty knowing that they will be dealing with at least two people (parent and child) for less pay...thank you.
• To the therapists who get to know my kid's interests and temperament and really strive to make therapy sessions be individualized to my child (and this is most of you!!)...thank you.
• To every provider / school / insurance company that does not make me jump through 10,000 hoops so that my kid can get the care he needs...thank you.
• To the doctors who do their job with excellence, reading the chart thoroughly, diagnosing and treating thoughtfully, performing surgeries with care, finding and solving the problems that others would have missed...thank you.  
• To the politicians at every level of government who hear the story of a special needs kid and take helpful action, especially when it's not primarily motivated by political gain (and heck, even if it is)...thank you.  
• To the friends, family, and churches who have learned about our situation, cooked us meals, checked in with us, prayed for us...thank you.

What would you add to the list?