Joshua Updates and Helpful Specialists

This post will combine two things - an update on Joshua's feeding and some general thoughts on my favorite specialists we see.  We had a couple feeding appointments this week:  one with the nutritionist and one with a rehab team.  They were both taking a close look at Joshua's diet and advising us on whether we could / should make any changes.  We've seen the nutritionist many times, but the rehab nurse practitioner was a new one, and she was awesome.

I'll start with the Joshua update:  He currently gets 12 ounces of Pediasure per day through the G-tube, which is usually 1/3 - 1/4 of his daily calorie intake.  The team approved us to drop that down to 9 ounces but to try to replace the additional 3 ounces with a nutritional supplement juice drink called Boost Breeze.  We are two days into this plan and it seems to be going well with the juice, so this plan might be the thing that eventually gets us off the feeding tube.

The thing that's a  little scary about heavily depending on a juice drink is that, like all of us, Joshua sometimes gets tired of things he consumes a lot of and then refuses to eat or drink anymore.  (This happened with Pediasure.)  If he tires of the juice, we don't have a good back up solution.  Because the list of foods Joshua will eat is very short and very low calorie (mostly fruits and crackers), the juice is a good short term fix, but eventually we need him to be eating "table foods" (especially meats, grains, and veggies) to get enough calories and nutrients.  So those of you who are so kind to pray for us, our prayer request is that Joshua eat a wider variety and a greater volume of food, especially the kind of foods you would eat in a normal meal.  The doctor was encouraging that he would get there, but that it just takes awhile.  

I feel good overall about where he's at, but the appointments regarding his feeding plan always leave my head spinning.  It will be good to get to Reno and take a few weeks off from appointments.

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And for part two, here are two of the most helpful doctors we've seen:  developmental pediatricians and rehab doctors (also called physiologists).  Though their focuses are different, I think they are helpful for the same three reasons:

1)  They take a comprehensive view:  If your kid has special needs, you will see a TON of doctors and health care professionals, and they will all run their own sets of tests, evaluations, and procedures.  Joshua, for example, has seen pediatricians, developmental pediatricians, pulmonologists, orthopedists, audiologists, otolaryngologists, neurologists, geneticists, anesthesiologists, gastroenterologists, dermatologists, plastic surgeons, ophthalmologists, physiologists, pediatric dentists, emergency physicians, neonatologists, intensivists, hospitalists, speech therapists, physical therapists, occupational therapists, feeding specialists, nutritionists, and social workers.  You end up with a ton of information, but not necessarily a clear picture of how it all fits together or how it relates to your day-to-day life with your child.  These doctors have the medical training to understand how all this mountain of medical information fits together, and how it relates to developmental delays (in the case of the developmental pediatrician) or life functions (in the case of the rehab doctor).  

2)  They come up with a practical treatment plan:  Once they have helped you assess what medical issues are causing your child's developmental or functional problems, they help you figure out a practical plan for moving forward.  And they recognize that there are many factors involved in addition to what will work best medically.  For example, they think about whether insurance will cover the things they are recommending, whether it will realistically fit into the family's schedule, etc.

3)  They manage expectations: This, for me, is the biggest one.  Some of our specialist doctors seem surprised that Joshua still uses a feeding tube.  The anatomy of his mouth has been repaired so that he can swallow fine and his airway is no longer obstructed, and they don't seem to understand that there can be a lot more to it than just fixing the mechanics.  But the developmental ped and the rehab doc understand that Joshua's medical history would explain severe oral aversions, might involve a learning curve in connecting hunger with oral feeding, etc.  They reassure us that even though his progress seems slow, it's not outside the normal range given his situation.  They seem confident that he will graduate from the feeding tube eventually, but are realistic in telling us that it could take many more months.  I don't mean this post to denigrate the other specialist doctors - they are all an important part of the puzzle, and the dev. ped. and rehab doc couldn't do their jobs without the information provided by the other specialists.  (Also, many of our other specialists are extremely knowledgeable and kind and just all around wonderful human beings and I'm glad to know them.)  But as the parent, you may feel more helped, supported, and understood by these doctors than by all the others.

For those of you who have seen a long list of doctors for yourself or your child, i would be interested to hear who you think is most helpful?

Holiday Related Thoughts

Thanksgiving

I enjoyed seeing pictures of everyone's beautiful Thanksgiving meals and family gatherings this weekend, but I'm wondering if there were any who had a weekend more like ours:  perfectly nice, but not the kind of thing you take a picture of and post on Facebook.  Here's how our weekend went:  Kenny and I started discussing what our Thanksgiving plans should be on Wednesday (as in, the day before).  We decided to forego cooking a giant meal for just the two of us and instead to dine at a restaurant.  We chose the restaurant by cruising around on Thanksgiving afternoon and seeing what was open and kid-friendly.  Our first choice was Golden Corral, but let me tell you, the mob scene we saw there makes the mob scene at Walmart on Black Friday look like small potatoes.  So we kept going until we decided on IHOP.  Kenny got the traditional Thanksgiving plate; I got pancakes and eggs.  Our kids each got an orange juice and each managed to drink more than they spilled, so that was a victory.  After the meal, we decided to check out the Brown Thursday shopping that we had seen so much protesting about, but alas, nothing was open yet at 4 pm.  Apparently the protesting was in regards to stores opening at 8 pm or later, which to me seems to be very similar to stores opening at 12 am on Black Friday, except more convenient for everyone involved.  But I digress.  We went home, got the kids to bed, and then I baked a pumpkin pie to try to give the end of the day a down-home touch.  Kenny and I enjoyed the dessert, and we enjoyed our non-traditional Thanksgiving.  Though we missed our families on this day, as we do on most other days of the year when we're not together, it was actually really nice to keep things low-key.

Lest anyone feel sorry for us after reading this account -- there is still much celebrating to be done this holiday season.  We will be visiting Kenny's family in Reno from mid-December through early January, where we will enjoy humongous and delicious meals, lots of laughs, and family togetherness for Christmas and the New Year.  I just wanted to share our Thanksgiving story because with Facebook, it's easy to feel like you're the only one who didn't cook a meal worthy of being pictured in a magazine, or who didn't gather with a group of 20, or who didn't celebrate in a completely traditional way -- there are many of us out there, probably more than you think.  (And to those of you who did work your tails off to cook a huge meal and host a big group, big props to you - that's a ton of work and if I had done it, you better believe I'd be posting it on Facebook.)


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Advent Season

I missed the last few weeks of church due to sickness that passed from family member to family member (and which finally seems to be leaving our house, hurrah!), so it was *really* nice to be able to attend church for the first week of Advent.  I've always enjoyed the Christmas season, but it's taken on a much deeper meaning for me since Joshua was born and I've felt new levels of worry and sorrow with some of his medical situations.  He's doing well overall now, but going through an experience of suffering really opened my eyes to the suffering in the world - what it really feels like to hurt, and how desperately you need something bigger than yourself to get you through times of despair.

It's so easy, this time of year, to get distracted with errands and silly controversies.  I've spent lots of time thinking about who to get Christmas presents for, and what to get, and why can't I be one of these people who makes cool homemade creations that are both affordable and thoughtful.  I've formed opinions on the great debates of the season:  when should Christmas music start being played; is Black Friday awesome or terrible; should the Christmas tree be artificial or real; to Elf on the Shelf or not to Elf; etc.  I've spent too much time focused on the wrong things.  So that's why it was good to finally get back to church.  It clears my head of all the distractions and reminds me of the true beauty and hope that we celebrate at Christmas:  that by being born, and ultimately through His death and resurrection, Christ brings hope into a despairing world burdened by sin and sickness and sadness.

Small Things with Great Love

I've been thinking lately about this: how can I spend more time focusing on other people and less time being so insular?  This book has been helpful:  Small Things with Great Love: Adventures in Loving Your Neighbor.  "Small Things" encourage you to love your neighbor (whether it's your literal neighbor or your "neighbor" across the globe) and act accordingly.  This can be done through your career, Christian ministry, community service, or just freestyle being kind to people.

"Small Things" make the point that service works best if it fits pretty naturally into your life -- meaning it uses your natural interests and aptitudes, and it takes place in communities where you feel drawn or have a natural fit -- but NOT meaning that there won't be sacrifice involved, or that the communities you're drawn to are going to look exactly like you.  This book is really understanding of life stage and personality / age / circumstantial limitations, but it encourages that everyone has something to offer.

I will be honest that right now, it's mostly just got me thinking, not doing.  As long as the kids are still in diapers, they are going to be my primary "act of service", and that's okay.  But someday not so far down the road, there will be a little more time for service work outside the home, and "Small Things" (as well as another book I recently read called The Missional Mom: Living with Purpose at Home & in the World) gave some really good questions for thinking about how best to incorporate service in your life.  [Note:  there is a lot more to these books than community service - they also encourage you to educate yourself about social justice issues, examine your spending and giving patterns, and lots of other things.]  Here are the questions:

• What is your deep gladness?   I deeply care about people having affordable and comprehensive access to health care. I care about alleviating poverty and the structural injustices that lead to poverty.  I like projects that benefits children (foster children, children living in poverty, children in need of better health care, etc.).   I love details - I like to read policy wonk articles carefully, I like to lose the forest for the trees when I have discussions with my husband.  I love to compete - whether it's litigation, sports, board games, you name it - I find activities more fun if there is a winner and a loser.  

• What are your talents, interests, opportunities you've been given?  The big one for me is that I have a law degree.  I'm hoping that when I get back to work, I can get a job with a public interest employer.  But even if not, there's always the opportunity to do pro bono legal work for people.  Another talent / interest I have is sports.  It's less obvious to me how this can be used to alleviate pain and suffering in the world, but I've seen other people do pretty amazing things with sports.  (Such as start a running club at a homeless shelter and train a team of women to run a half marathon; coach at-risk kids in team sports; etc.)  

• What's your pain?  I thought this was such a good question.  You have the best potential to bond with people deeply when you share the same pain rather than the same interests or accomplishments.  When I find out someone went to the same college as me or that they used to be a triple jumper, we can have a good conversation for 5 minutes and then we go our separate ways.  When I find out that someone else's child has special needs, and particularly if the needs are similar to my child's needs (ie pediatric surgeries, developmental delays, feeding tube), my heart goes out to them.  We may be totally different people with totally different lives, but if we have that in common, then I know that I understand some of their deepest fears, their deepest struggles, their hardest moments.  Shared pain bonds people in a way that other commonalities never can.   

• What are some of the particular communities you are placed in right now?  The book talks about how you can start integrating acts of service into your life right away if you identify the people who you already interact with on the regular.  I am a stay at home mom with a kid in preschool, so the people I see most regularly right now are other moms (at the library, play group, the park, school pick-up etc.); school staff; and therapists and doctors.  So these are the people who are in my "community", and I should think about how best to serve them.  Since I am pretty introverted, a good place to start would be striking up conversation with these people about their lives, rather than having purely functional interactions and otherwise staying in my shell.  

Once you've identified the answers to these questions, the idea is that you can start looking for service opportunities (formal or informal) that are a good fit for you.  I would love to hear other people answer any of these questions, or add questions to the list.


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Transitions are Hard

A couple weeks ago, I wrote about how Joshua started school and how it wasn't too hard on him or me. After that first day, though, I went through a little bit of a depression.  This month, Joshua seems to be growing up all at once – switching to a regular bed, dropping a nap on most days, starting school, turning 3, and starting to potty train with more intensity.  I’m grateful for how well all of this has gone (with the exception of potty training, which is going to be a slow process).  But it’s also making me feel a little sad, lonely, useless, and off-kilter.  Lonely because I like having Joshua around – he brings a real sense of life and joy to the household, and it’s so quiet when he’s not around.  Sad because I know as life goes on, he will become increasingly independent – spending more time at school and with friends, needing and wanting my help and attention less, etc.  I need to remember that this is a GOOD thing for at least two reasons:  1)  It’s a great blessing that Joshua is moving towards independence; and 2)  As the kids grow up, it means I get back some of my own independence, which I can use for other things – getting back to work, giving more attention to Kenny, having quiet times, exercising, doing service work, etc.  But you spend those first three years adjusting to the fact that your baby is utterly dependent on you at all hours of the day for his most basic needs – and then just as you’ve adjusted to that reality, it starts to go away.  Joshua is still needy most hours of the day, but now his teachers are giving him the help he needs 15 hours a week.  They are providing a lot of the therapy and language work he needs, the social interaction, at least one of his snacks, and some of the encouragement and love.  Of course they can’t replace his family and home life, but they’ve got a big chunk of his time and attention now, and it can be hard to share.  (There's also the issue, underlined by the sad news of the school shooting in Sparks this week, that when he's out of my physical care, I can't physically protect him.  Of course that day has to come eventually, but it's hard to physically hand him over to someone else when he's only three years old.) 

I was feeling off-kilter because I always have a hard time with transitions, and this is a big one in the life of a stay at home mom.  The last 3 years, and particularly the last year, I’ve gotten used to filling every minute from 6 am to 8 pm with tasks.  If there’s a spare minute, I spend it on Facebook, but that’s usually while also keeping one eye on the kids or trying to grab a meal or singing Wheels on the Bus.  Now, all of a sudden, I've got some quiet time in my week.  It’s hard to remember how to slow down and use the quiet well.  There are all sorts of things I would like to be doing more of:  reading the Bible and praying; exercising; keeping a cleaner house; reading and writing.  I just need to figure out how to integrate them more smoothly into the daily routine.  One thing that makes this tricky is that the quiet time I’m referring to is when Zoey lays down for a nap while Joshua is at preschool.  This doesn’t happen every day, and someday soon she’s going to switch to an afternoon nap only, so I’m hesitant to grow reliant on quiet time in the morning when it’s soon going to disappear.  I feel a little weird feeling “useless” when I’m still caring for Zoey around the clock, but the truth is that it’s much easier than it was caring for Joshua at her age (because no therapy appts or developmental stuff to work on or meds / tube feeds to administer) and it’s also much easier than caring for both kids at once.  So even when she’s awake and we’re hanging out together, it feels less purposeful because it’s not like there’s a bunch of specific goals and objectives I need to accomplish with Zoey, nor are there a million tasks to get done in between making sure she and Joshua don’t hurt themselves or each other.  I need to learn to just enjoy Zoey without also trying to accomplish a to-do list of tasks as if she is a project to be worked on.  

I think I also feel sad because Zoey is possibly our last kid.  That means that my time with the kids at home is drawing to a close.  Not in the next five minutes or anything – probably not even in the next three or four years – but it’s on the horizon now.  There are many things about this phase that are hard work and drudgery, but there are also things about it that are unbelievably sweet, and it’s sad to think that might be drawing to a close forever.  (Not to be overly dramatic – Kenny and I both agree that the kids get more and more enjoyable as they get older.  The best is yet to come, as they say.)  

The good news is that after a week, I was able to snap out of my funk.  (It helped that the week long monsoon that coincided with Joshua's first week of school finally stopped.)  I'm learning to enjoy my quiet alone time and my one-on-one time with Zoey.  The other thing that helps enormously is that Joshua seems to love school.  He's only attended for two weeks and we can already see a big difference in his speech.  He enjoys playing basketball in the school gym and doing arts and crafts projects (something this mama is NOT good at facilitating at home) and he's made some friends.  I really like both of his teachers and I think it's a very good situation.  So things are looking up!  I just wanted to share my feelings because I know many of you have sent kids off to school, or will soon be doing so, and can probably relate.

Pumpkin and White Bean Soup Recipe

Taken (and slightly adapted) from the New England Soup Factory Cookbook:

Ingredients:
1 big can of pureed pumpkin (or 2.5 pounds fresh pumpkin, cubed and roasted)
1 teaspoon salt
1/2 tspn black pepper
4 Tblspns. butter
4 whole cloves garlic, peeled and minced
1 large onion, peeled and chopped
2 ribs celery, diced
5 carrots, peeled and sliced
10 cups chicken stock
1/2 tspn sage
1/2 tspn nutmeg
1/2 cup brown sugar
1/2 cup grated Parmesan cheese
2 cups cannellini beans
1/4 cup torn fresh basil leaves, for garnish

Directions:
Melt the butter in a stockpot over medium-high heat.  Add garlic, onion, celery, and carrots.  Saute for 10 minutes.  Add pumpkin, stock, sage, and nutmeg.  Bring to a boil.  Reduce the heat to medium, cover the pot, and simmer for 35 minutes.  Remove from the heat and add the brown sugar and cheese.  (Optional:  puree the soup in the pot at this point.  I don't puree because I like my soup chunkier.)  Season with salt and pepper.  Add the cannellini beans.  Stir well.  Serve with basil leaves.

First Day of School

Joshua had his first day of school today.  We've been doing meetings and evaluations and paperwork in preparation for school since April, but I'm still kind of in shock now that the day has arrived.  He's attending a developmental preschool, which meets 5 days a week for 3 hours a day.  It's a language intensive program and his only significant developmental delay is speech, so we are hoping that this will be a good fit and a positive experience for him.

Developmental preschool is offered through the public school system, so this meant that drop off was at the local elementary school.  I had pictured this very emotional scene - both Joshua and I in tears, not quite ready to take this big step - but the reality was (fortunately) very different.  His classroom is all the way at the end of the hall, so we navigated our little crew (me, Josh, and Zoey in the stroller) through the crowd of kids unloading off the buses and teachers directing them to the appropriate classrooms.  When we got to the right class, Josh had a brief moment of hesitation, but his teacher took his hand and showed him where to put his backpack and lunchbox, and that was enough distraction to avoid any tears.

I was feeling a little sad as we said our goodbye, but kept it together as we had to walk back through the long hall of teachers and kids, then had to meet with the school nurse to talk about G-button issues.  While we were meeting with the nurse, they did the morning announcements, which included the Pledge of Allegiance, the national anthem, and a moment of silence.  My mind wandered back to my Constitutional Law class and the lawsuits that have been filed about what those two minutes (of pledge / anthem / moment of silence) should be like and whether they should happen at all.  During the Pledge and national anthem, the nurse stood up and I followed her lead, but neither of us said anything and it was all pretty awkward.  Then the announcer moved on to the school menu, and we continued with our meeting.

I have heard from fellow parents of children with feeding tubes that school districts tend to be overzealous or underzealous when it comes to dealing with feeding tubes.  Our school district is definitely of the more low key variety.  I had to sign 3 forms during school registration in case Joshua gets photographed or filmed, but zero forms in regard to his feeding tube.  We wrote a medical plan in case the tube comes out and included it in the IEP, but that was only because I requested it.  They let me bring a spare G-button and replacement materials to the school, but again, this was only because I requested it.  It's nice that there's not a bunch of loopholes to jump through, but I'm kind of amazed that they don't have a more formalized system in place, as there must be other kids in the school district who have a G-button.

We picked Joshua up around lunch time and his teachers reported that he did great.  It will be interesting to see how he does at drop off tomorrow, now that he knows what this whole school thing is all about, and I don't think we'll have a true sense of how he likes it and what an average school day is like for him until we have completed a full week or two.  But we both made it through the first day, so cheers to that!

I have been very anxious leading up to this day, but I'm feeling a lot better now that school is actually underway.  It's nice to have a few quiet hours in the morning and a chance to give Zoey some one-on-one attention.  It's bittersweet to watch Joshua take the first small step towards independence, but I'm relieved that he handled it well and incredibly grateful that he's doing so well overall.

On gratitude

As Thanksgiving approaches, I've been thinking about ways to be more intentional about thankfulness.  I struggle with gratitude.  I tend to spend lots of time worrying or distracting myself, both of which are major roadblocks to leading a grateful life.  But I would love to be a more thankful person, so I'm trying to come up with good strategies to work towards that goal.  Here are ideas I've come up with (**warning:  this post has lots of "inspirational" pins, which i love, but i know some people find annoying, so my apologies if you are one of the people who gets annoyed by them**):

Living in the present:  Everyone else seems to love fall, but autumn gives me the blues.  I love the long, hot, lazy days of summer.  It makes me sad as the sun sets earlier, the air gets cooler, the leaves fall off the trees, and we slowly march towards winter.  BUT, i do like the things that everyone gets so excited about in September:  college football, Pumpkin Spice lattes, a perfect 70 degree day, and hay rack rides.  So, for me, autumn is always a good exercise in being grateful for the good things in your life at this moment rather than worrying about difficulties around the corner.

Gratitude journal - this is where I keep a list of all the big and little things that i'm grateful for, and try to add a few items each day.  I try to make these entries very specific and very personal to me, because if you're not careful, this can get to feel a little bit like a gift book you see while browsing in the checkout line at Barnes and Noble.  (You start writing things like, "I am grateful for the sound of crickets chirping at dusk.")  But it can also turn into a great record of your blessings.

Remembering the past and being grateful for progress- Right now, my life feels somewhat mundane - like every day is the same routine of snacks, park time, diapers, and naps.  But then I think back to the past few Septembers, and I realize what a blessing it is to have a mundane month. Three years ago, I was scheduled for 4 trials and set to go into labor any day - life was highly stressful.  Two years ago, we had just moved to Virginia, so we had to unpack and settle into a whole new life; meanwhile, a hurricane blew through town, and we had to fly Joshua across the country for a surgery and there were some difficulties with his oxygen situation - life was highly stressful.  Last year, Zoey had just been born and cried for hours every night, we had just moved houses, and Joshua broke his leg and was showing some red flags for autism - once again, life was highly stressful.  This September, there were no major health crises, no new house, new job, or new town, and no scary storms; life is not highly stressful.  I'm taking a moment to be grateful that mundane means the absence of extreme stress and difficulty.  

Reflecting on the great blessings of living in our particular time and place in history -- Last weekend, I had a nice little Saturday (pardon the Old School reference) - I took the kids to the park, drove over to the library to check out some books, and listened to "Wait Wait Don't Tell Me" as I drove around running these errands.  What a pleasure to live in a country where we have enough abundance that things like parks and libraries are part of the basic government package; where people donate money to provide entertaining radio programming; and where I have the safety and leisure time to do these things.  

Spending time with people I'm grateful for - this can be people I know really well who make me feel understood and loved, or it can be people I don't know so well, but the way they conduct their life makes me feel grateful that I get to know them and inspired to be more like them.  

Reflecting on my faith -  The hope of the Gospel is the major reason I have to feel grateful, even when life is really hard.  I believe that God made me, that He is with me during hard times, that He has redeemed me, and that He is giving me an eternal hope.  And it's impossible not to feel grateful when I really internalize this.  

What would you add to this list?

Political Rant on why we shouldn't put type-of-food limits on Food Stamps

I posted on Facebook about how the House just passed a bill making drastic cuts to the SNAP (food stamp) program, and got some interesting responses from people.  A common theme was the desire to see limits to the type of food people can purchase with their Food Stamps.  I like the idea of offering classes on making and preparing healthy foods, and I would also be on board with financially incentivizing the healthiest foods.  But I think it's ultimately best to let people make their own food choices for the following reasons:

1)  Where do you draw the line on what and how much to limit?  Are we more concerned about price or health?  Why is it okay to put paternalistic limits on this distribution of government money but not others?

Let's assume we're concerned about health -- If we make people buy fresh produce, will it have to be organic?  Locally grown?  Are we going to set up cameras in the kitchen to make sure that people bake rather than fry, use olive oil rather than vegetable oil, finish up the last veggies on their plate before they start in on dessert (which they got from the local Rescue Mission because we won't allow them to actually purchase a fresh dessert of their choice from the grocery store)?  I would go nuts if I couldn't get my weekly sugar fix from the grocery store.

Let's assume we're concerned about price -- can people buy any meat at all, or should all protein come from beans?  Can they get canned beans, or only dry?  Why don't we just give people some seeds and require them to grow and harvest their own food, because this would be a lot more economical.  Or we could just recognize that people on Food Stamps have a very limited budget (around $1 per meal) and so if they are choosing to splurge on one thing, then they are choosing to scrimp and save on other things.

I am not on Food stamps, but I do receive a chunk of money from the government each year in the form of the Home Mortgage Interest Deduction.  I would be super annoyed if the government told me that I could only spend that money in ways that were healthy and/or financially prudent.  For the most part, I do try to make healthy and financially prudent decisions, but I want the freedom to decide
how to do that and when to make exceptions. For example, I bought a pumpkin spice latte today.  I could've made myself a cup of Folger's coffee at home for 1/100th of the price (and probably also 1/100th of the calories), but I decided that this was a good way to spend my money today.  If the latte would've been paid for by the tax deduction, does it seem reasonable for the government to step in and say:  "This Pumpkin Spice Latte is a bad choice, health wise and financially, so we aren't going to allow you to buy this".  And if that doesn't seem reasonable, then why is it different with Food Stamps?

2)  We don't know people's situations and we can't necessarily assume that we would make better choices for their family than they do.  

I spent the year after college living on a very limited budget, so I understand and agree with those of you who suggested that it's possible to eat reasonably healthy on a Food Stamps sized budget.  But I was able to eat healthily for a lot of reasons - I had a steady home situation that included a place for me to store and refrigerate food, cooking implements and appliances that allowed me to prepare it, and roommates who encouraged and helped train me in homemade food preparation.  This is not necessarily true if you are  living with different friends every week, living in a weekly motel, or living out of your car.  You may not have grown up in a home where food was freshly prepared and you might not have a clue how to do it.  You may have family members who, because of allergies or medical conditions, have a diet that is severely restricted in surprising and expensive ways.  You may decide to blow a week's worth of Food Stamps on a fancy birthday cake for your child because you know how much the birthday means to the child and you know that you can access a week's worth of food at the soup kitchen - and this decision might be the absolutely best decision for your family.

I seem to be in the minority in opposing food choice limits on Food Stamps.  Is there anyone who agrees with me?  Help a sister out and add your reasons in the comments.

My Favorite shows on Netflix

I wanted to lighten things up a bit this week, and you can't get much lighter than talking about your favorite tv shows!  Kenny and I watch television through Netflix streaming rather than a cable package.  We made this switch about three years ago, and it's amazing what a good substitute Netflix has been (and for a fraction of the cost!).  They have a good variety of shows, you can watch them at your convenience, and there are no commercials.  We do miss some things, especially live sports, but overall Netflix has served our viewing needs very well.  Now that my infomercial for Netflix is over, here are my favorite shows that are available on streaming right now.

Best dramas:

1. Friday Night Lights - This is that most rare thing:  a show where the television spin-off is better than the movie AND the book.  I grew up in Nebraska, where high school football is king, so I identified with the atmosphere of this show.  The thing that hooked me, however, is not my history of growing up in football country, but rather the interesting, likeable characters.  You will root for the underdog players on the team, you will initially hate but grow to love some of the town folk, and you will want to be (or be closely linked to someone like) the Taylors.  Clear eyes, full hearts, can't lose!
2. Grey's Anatomy - I watched the first six seasons of this show when Joshua had just been discharged from the NICU and Kenny and I were taking turns pulling all-nighters with him.  It was interesting to watch a medical drama at that point because sometimes you are mad ("they are getting all these particular details of xyz  medical procedure wrong!"), and sometimes you are sad or sentimental because you identify.  Grey's is primarily a relationship-driven soap opera with a few medical things thrown in each episode to lend authenticity, so it was mostly escapist despite appearing in a very surface way to be closely linked to our life.  Grey's seems to get a little more outrageous every season, but that's part of the fun.  
3. Parenthood - Four adult siblings navigate family, career, and their relationships.  It's a show about plain old life when you're in your thirties.  Except that everyone is beautiful and has an insanely interesting job and gorgeous house and lives in Berkeley. 
4. West Wing - This show is (IMHO) the best thing on Netflix and maybe the best television series ever created.  It's the full package:  a behind the scenes look at life in the White House, a story arc that extends across seasons (but also creates satisfying plot arcs in each episode), and characters that you really care about (and a President you wish you could vote for, and an administration you wish you worked in). 

Best comedies (I won't describe these except to say that the first three are extremely hit or miss, but when they hit, it's with the power of a Mack Truck on steroids):

1. Portlandia
2. 30 Rock
3. Parks and Rec
4. The Office 

Best Reality:

1. Cake Boss - I can neither explain nor defend this pick, but if you dig fondant and cartoonish reality stars, than this show might be for you.  

So those are my picks.  What are your favorite shows right now?

Updates on Joshua

In my last blog post, I listed some stuff that was going on with Joshua.  We went to all the appointments, so I have updates on everything.

Eating:  The nutritionist was happy with Joshua's calorie intake and bumped us down from 18 ounces (540 calories) to 12 ounces (360 calories) of Pediasure per day.  Our calorie goal for him is to consume at least 1,000 calories per day, so he will now be getting about 2/3rds - 3/4ths of his calories by mouth.  We will continue feeding therapy once per week to try to help him learn to eat a broader range of food.  So we still have some work to do before we can seriously discuss removing the feeding tube, but we are moving in the right direction.

Snoring:  The pediatrician believes that Joshua's snoring, drooling, and coughing is related to allergies and asthma triggered by the change of seasons.  She put him back on 5 medicines and they seem to be working.  (This is a huge relief because if the snoring wasn't allergy and asthma related, then we might have been looking at surgery and/or oxygen again.)  We will see the craniofacial team in a week to see if we need to take any further steps.

School:  Joshua did qualify for developmental preschool through the public school system, so he will start attending school 3 hours per day, 5 days per week in October.  I'm feeling pretty nervous about this, as he still sometimes has a hard time tolerating an hour of church nursery.  But I'm hoping that this will be a gentle setting, so even though 15 hours per week is a lot of time for a 3 year old, hopefully it will ease him into the other aspects of school.  It's a language intensive program and his main delay is speech, so that should be a great fit.  If things don't work out, we will just pull him from school, get him therapy services privately, and maybe try again next year.  (As an aside:  sometime I might blog about the whole IEP process, what it's like to be a parent rather than a professional in that setting, and what it's like to be the helicopter parent who is probably making all the teachers roll their eyes.)

We now have a 5 day stretch with no appointments, so we kicked it off today with a Pumpkin Pie donut and a morning at the beach, both of which were lovely.  I hope you all have a nice weekend!

On Having a Special Needs Kid v. a Medically Typical Kid

This is the last of my 3 parenting reflection posts (the others are here and here), and this one is by far the most emotional for me.  There's no way I can give full justice to this topic in a blog post - this is just a few brief thoughts, plus a brief update on Joshua at the end.

Day to Day

• On one hand - Being a parent is hard work no matter what, no matter how many kids you have, no matter if you're working or not, no matter if you're the mother or the father.  (This post describes that well.)  I learned with Zoey that medically typical kids are fully capable of taking all the energy you've got.  Kudos to all the parents out there - you're all working hard.
• On the other hand - Being a special needs parent is like having a full time job on top of the regular parenting gig.  You attend hundreds of hours of appointments each year with specialist doctors, therapists, and other health care workers.  You learn how to do specialized medical procedures that would normally be done by a doctor or nurse.  You keep meticulous track of little things like food intake and medicine schedules.  
• Someday, when I am interviewing for jobs and asked to explain how my "gap years" as a stay at home mom will affect my future job performance as a lawyer, I will tell them about how I had to read through insurance policies with a fine tooth comb and file appeals; how I had to research different procedures that I knew very little about and try to decide between alternative courses of treatment, none of which were perfect; how I had to keep track of a complex and ever changing fact pattern (my son's medical history); and how I had to advocate for my son when the doctors treated him like just another thing on their to-do list.  

Worries

• This might be stating the obvious, but when your kid is experiencing acute health trouble, your stress and worry level is through the roof.  I thought I knew about worry when I moved out of state for college, when I graduated law school without a job, when I took the bar exam...but those things were *nothing* compared to what it's like waiting for your baby as he goes through major surgery.
• More surprising to me is this:  Joshua's health is better than it has ever been, but the worry is still there, right below the surface, always ready to rear its ugly face when a new issue arises. Joshua's had good health for the last year, but there have been a few stretches where health concerns have come up and it feels like you're back at square one, in full panic mode.  
• I worry about Zoey, too - I hate it when she gets a bump on her head, or when her fever spikes above 100 - but it's different.  I've never had to worry that something happening to her is going to lead to surgery or hospitalization or have other serious long term health consequences.    

Development

• It's remarkable to see how naturally things fall into place for medically typical kids, and conversely, how much work it takes to get a skill in place if it is somehow missed during the normal course of development.  It's amazing how interdependent early development is.  For example, if you learn to eat solid foods in the typical way, then you get fine motor practice (picking up Cheerios with a pincer grasp, using a spoon to scoop your mashed veggies) and you strengthen your oral motor muscles for speech as you chew.  If you are delayed with eating, then you might end up being delayed in fine motor and speech as well, since these skills are all interrelated.  And all of early development is like that.  If you get behind, it takes a lot of work to get caught up.  

Other

• Special needs parenting makes you realize right away how deep your love for your child is because they are immediately threatened.  You love all your children instantly, whether medically typical or special needs.  But you develop a deep bond with the special needs child because they have a particular vulnerability caused by the needs of their body, and helping and protecting them through their difficult experiences creates a unique and strong relationship.  
• Special needs parenting impacts your faith, your relationships with others, your ability to work, your finances, and your day to day life.  Parenting in general affects these things, too, but special needs parenting turns your whole world upside down in these areas.  

Like I said, these thoughts just scratch the surface.  Other special needs parents who are reading this, please weigh in with your thoughts.  Since I'm talking about special needs, here's some of the health stuff that's going on with Joshua this week.

Specific stuff going on with Joshua now:

• Joshua has an appointment with his nutritionist tomorrow.  We have been going through the slow process of weaning him from his feeding tube for the last year, and she is the one who tells us whether we can decrease the amount of food that he takes by tube.  She does this by checking his food intake (both number of calories and nutritional content).  He has gained weight and increased his oral calorie intake, but he still eats a very narrow range of food (mostly fruit and dairy, no table foods), so it's hard to guess what she will say.  Right now, he gets about half of his calories by mouth and half of his calories by tube. 
• Joshua has been snoring and having some other breathing issues when he sleeps, so we are checking in with our pediatrician this week and with the craniofacial team later this month.  We are really hoping that the breathing issues are related to allergies and can be solved with medicine.  Joshua hasn't had any significant problems with sleep apnea since he was 12 months old, so we are hoping this is an unusual and solvable anomaly.
• Joshua has an IEP Eligibility meeting on Wednesday, where he will presumably qualify for developmental preschool.  I am kind of freaking out about this (he seems so young to be starting school at all, let alone 15 hours a week!), but I am also grateful for the opportunity to treat developmental delays intensively at an early age so that he has a much better chance of being "caught up" by the time he hits grade school.  

I will do a post next week about how all the appointments this week turned out. 

On Having a Boy v. a Girl

Today's topic is my thoughts on how having a girl is different than having a boy.  Disclaimer: this is a post about my feelings on it, as there is very little difference between an infant boy and and infant girl (except that Zoey has twice as many clothes as Joshua did).  If I still have a blog in 18 years (if blogs are still a thing in 18 years), I will write another post about actual differences as opposed to projected differences. And I would love to read comments from any readers who have already raised boys and/or girls about their thoughts on the differences.

When I found out we were having a girl, I was scared about the following things:

• As a general rule, the world is tougher on women - The world puts big and sometimes contradictory expectations on women as far as body image, having a strong enough but not "too" strong personality, pursuing both career and family, and making it all look effortless.   I was scared of bringing a girl into a world that expects her to fill these big shoes.  
• What if she is nothing like me?  I'm not into traditionally girly things like tea parties, princesses, and makeup.  I wasn't sure how I was going to relate to my daughter if she turned out to be a girly girl.  
• What if she is exactly like me?  I was nervous about having a same gender child because I think it makes me the primary role model for her, and there are things about myself that I hope she doesn't emulate.  

Now that she's born and I've had a year to adjust to being the mother of a daughter, I feel more hopeful and less fearful.  Here's how I feel about those same things:

• Regarding big expectations: I see opportunities to help shape how she thinks about body image, self esteem, etc.   To steer her towards positive things (for me growing up, those things were Christ, sports, and academics) and away from negative things that will tear her down.  (Here's a great article on how to talk to your daughter about her body.)  Also, it's funny how life works out - the things you think you should be worried about are rarely the right things to be worried about.  Zoey has the kind of personality that should enable her to get along very well in the world.  She's mostly a happy, easy-going girl, but she's also great at advocating for herself if something is wrong (right now, in the form of screaming).  Joshua has a much more tender personality, so I worry more about the world hurting my son than I worry about the world hurting my daughter.
• Regarding makup and tea parties:  We'll see if she's even interested in those things.  If she is, I will learn about them.  I knew and cared very little about bridges before Joshua was born, but now I've watched documentaries on the Golden Gate Bridge, walked or driven over every bridge in Reno and Lincoln, and learned the verses to "London Bridge is Falling Down".  You learn about what your kid is interested in, and you understand that it's a passing phase and next year they will be on to something else.  (By the way, if the girliness goes beyond my abilities, then I will call in reinforcements.  I'm talking to you, Aunt Michaela, Aunt Esther, and Aunt Naomi.)
• Regarding primary role modeling:  While it's still scary, I think having a same gender child is also special - you can identify with and understand them in a more intimate way than with the opposite gender child.  I know what it's like to be a teenage girl, but not a teenage boy; I know what it's like to think about balancing career and family from a female perspective, but not from male; etc.  Which is not to say that I love Zoey more than I love Joshua - just that there will probably be many moments in the future where I can understand her challenges and triumphs better because I've been through those same sorts of things myself.  And as far as her copying things about me that I don't like?  It's good motivation to try to fix the things about myself that I don't like, and also a good reminder that we all have faults and all need grace.  

One final thought:  In the last couple generations, women hoped that their daughters would have the opportunities that they never had.  I grew up with many opportunities, with tons of encouragement, and with the idea that I could do whatever I wanted to do.  So my hope is that I can raise my daughter with the same opportunities and encouragements that I received.

On Having Two Under Two

Zoey celebrated her first birthday last week.  Her transition into toddlerhood has made me think about a few things, so I'm writing a short series of parenting posts over the next few weeks.  The first one is my thoughts on raising two kids under age two.

People say the first year of having two (or more) young kids is hard, but the year is really more of an ebb and flow.  Here's the timeline as I experienced it:

• First 4 months:  Off the hook crazy.  Parents and kids are both getting used to the new family dynamic, baby is waking several times in the night to eat, baby wants to be held throughout the day, and toddler is still young enough to need help and attention constantly.  The basic goal during these months is survival.  
• Months 5-7:  Blissful reprieve!  The baby is (sometimes) sleeping through the night and (sometimes) content to just sit and play. Toddler is more used to baby and parents are more used to parenting multiple kids.  The baby can't move, so you can leave them in a room for a minute to go do something else and not worry about them tearing the place apart or falling down the stairs.  
• Months 8-12:  Return to crazy, but much less so than the newborn months.  Baby starts moving and getting into everything, so baby needs to be monitored constantly.  Also, baby moving means that toddler and baby have to learn to start sharing toys, which is a tough lesson for both of them. 

Here are some pros and cons of closely spacing children:

Pros of Having Closely Spaced Children:

• If you want to stay home with young kids and then get back to work when the kids are in school, it maximizes your working years to space them close together.  
• You get through the baby phase quickly.  I've been very pleasantly surprised how much I love having my own babies (as you may have seen by my frequent posts on Facebook), but I'm really not a baby person.  I loved both of my kids from the moment they were born, but I enjoy them more as they get older and have some ability to interact.  
• It makes life easier to have kids in the same stage of life.  So right now, our stage is diapers and naps.  Later, it will be shuttling kids around to after school activities.  
• Along the same lines, closely spaced kids are natural playmates.  As Zoey is starting to say a few words, she and Joshua are good role models for each other with speech development.  They enjoy the same kinds of toys (which leads to fights, but also teaches sharing).  They get excited when the other one is around.  
• You become a PRO at multi-tasking and hustling through chores when you have a spare moment.  Also, it makes a trip to the grocery store by yourself feel like a trip to the spa.  

Cons:

• At this young age, both the older kid and the younger kid are very needy.  Sometimes, they both urgently need things at the same time, and it's impossible to help them both instantly.
• Both kids are exhausting:  infants are physically exhausting; toddlers are more mentally exhausting.
• You very rarely have time for just yourself or your spouse (this is not so much a spacing issue).

One really good lesson I learned from having two kids;

• When you just have one kid, it's easy to feel like it's your credit if they do something well and your fault if they do something poorly.  Once you've raised two kids with essentially the same parenting style, you see how it's very much not about you.  If your kid is a great sleeper, or a picky eater, or shy, or never sits still, it's probably just because they were born that way.  Of course kids need some things (love, discipline, provision of basic needs) -- but it's kind of a relief to know that, for better or for worse, my kids' strengths and weaknesses are largely not about me.  

In conclusion, I will say that we would definitely do this spacing again.  Things have already calmed down now that we are rolling into the second year, and the pros of close spacing definitely outweigh the cons for our family.  I would be interested to hear your thoughts on spacing kids!

We made it home!

We are officially home after our 3 month trip across the United States.  It feels good to be back!  Here are some thoughts about the last stretch of road trip and what it feels like to be gone for so long and then get back:

• East side v. West side of flyover country:  there is a huge difference between the eastern and western halves of the (non-coastal) United States.  The East is WAY more populated, which means you see lots of cities, you have to plan for rush hour traffic at different points, the beauty comes more in bursts, and you encounter significantly different regional cultures from state to state.  The West is barren of both people and trees - I believe there is only one city with more than 60,000 people in the entire stretch from Lincoln to Reno - which means you view landscape as far as the eye can see (which is sometimes stunningly beautiful and sometimes eerily desolate), you have to think about whether you will make it to the next gas station if you are anywhere below half a tank of gas, and there is a more universal cowboy / frontier feel to it all.  
• House sitters:  We had house sitters stay in our house, which fortunately worked out very well, but it's funny to notice the little changes they have made.  Some are nice / embarrassing (they organized the chaotic pots and pans cupboard!); some are puzzling (where did the sharp knives go?); and some are funny (they used the kids' refrigerator magnet letters to spell out Latin phrases).  
• A second chance at a first impression:  when you walk into your house after such a long time away, it's almost like you're seeing it for the first time.  This combined with just coming from both of our parents' very comfortable homes inspired us to make some changes - hanging up pictures, putting down area rugs, rearranging some furniture.  And by us, I mean Kenny.  (I am very happy with the changes, but Kenny is more the doer in our family.)
• My favorite room:  it's nice to have my kitchen back.  We are at the stage in life where meals and snacks are constantly being prepared, consumed, or cleaned up.  It's nice to bring that mess and chaos back to our own house.  Thanks to my mom and mother in law for being so patient and gracious with us as we commandeered each of your kitchens for several weeks.  
• One more thought:  When you're traveling around the country, you can only take what will fit in your car.  This means that you leave *most* of your stuff behind.  And by and large, you do fine without a closet full of clothes, the extra bins of toys, and all the gadgets and electronics and appliances that make life a little easier / more entertaining / more luxurious.  (Granted, one of the reasons it was so easy was because we were able to borrow some of these things from our parents.)  It makes me realize how much less I could live with (and makes me want to clean out my closet), but it also makes me hugely grateful for the stuff to which we are returning.  

It was great to see so many of you during our travels!  

The Good Life Highlights

Our time in Lincoln is sadly drawing to a close.  We will head back to Virginia on Friday.  We have some fun events planned this week, but we are in the homestretch of our summer of travel.  I will write a post some time in the future about what it's like to be on the road for three months, but this one will focus on Nebraska highlights, which were:

• Seeing friends and family old and new, near and far.  
• Reading Willa Cather's "O Pioneers" while being in Nebraska.  My Grandma Eileen loved Willa Cather, and she once told me that she skipped over the dialogue and just read the descriptions of the prairies.  I was in high school at the time and couldn't think of anything more boring, but now I get how beautiful both Cather's writing and the Nebraska prairies actually are.  
• Visiting our former church, Grace Chapel.  It's always such a blessing to experience their worship and sermons.  
• Lots of family togetherness --   
• All three of my siblings live in Lincoln, so we were able to have gatherings at houses all over town. Mitchell just moved into his first apartment this weekend, so we get to help him housewarm this week. 
• My sister Michaela is also a stay at home mom with a 2 year old son and a baby daughter, so we have quite a lot in common right now.  We were able to get together and do kid-friendly outings almost every day, which makes the stay at home mom gig so much more fun.  
• My brother Eric is in his first year practicing law, so it was fun to talk to him about that and reminisce (since I am [not] such a senior to him, with 3.5 years of practice plus 2 years removed).  
• Watching the toddler cousins play together is fun, and has been good for Joshua's development.  
• My parents have graciously hosted us for 5 weeks, which has included lots of babysitting, cooked meals, and help on outings.  

• Kenny was in France for 3 weeks, so it made me appreciate all that he brings to our family.  I understood before that he helps out, but i appreciate much more how much laughter, practical help, emotional support, and joy he brings to our family because i experienced the absence of it for 3 weeks.  
• Visiting my grandparents
• We spent lots of time at the pool, so Joshua's and Zoey's water preparedness has majorly increased and my tan has minorly increased.  
• Lincoln feels like home.  This is the place where, when i run over to the grocery store, I run into random people I know from ten years ago; where I know in great detail what's going on with local politics and development; and where i feel, culturally, that these are the people who are most like me.  
• And finally, an upcoming highlight:  Zoey has her first birthday on Wednesday!  Pictures forthcoming.  

Goooooo  Biiiiig Reeeed.  (GO! BIG! RED!)

Two Book Recommendations

I haven't been doing as much reading as usual this summer, but I've worked my way through a few books, and these picks were two of my faves.  They were both long (700+ pages in the case of the second one), but very readable.  Without further ado, here they are:

The Interestings is a fiction book about six friends who meet at an artsy summer camp and ironically name themselves "The Interestings".  The book follows these friends through four decades of life.  Some of them successfully pursue an artistic career, while others pursue practical jobs; some strike it rich, others struggle to pay the bills; some stay friends, others drift apart from the group.  The book deals with class issues, envy, and how friendships can be tricky when friends are differently situated as far as money and power.  This book will not change your life, but it's a fun and smart commentary on modern American culture.
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Far From the Tree is a non-fiction book that explores families with children that are "exceptional" (meaning, in this book, different from their parent and from mainstream society in a really significant way).  It describes how parents deal with having an exceptional child and how children handle being exceptional.  It also explores and challenges perceptions of identity and illness (and whether something can be both).

Solomon writes chapters on these 10 categories:  deaf, dwarfism, Down's Syndrome, autism, schizophrenia, multiple severe disabilities, prodigies, children who commit crime, children conceived in rape, and transgender.  In each chapter, he gives a brief description of the identity or illness, then interviews families who fit in this category.  It is fascinating to see how much overlap there is in the experience of the parents across the categories, since the identities / disabilities themselves are pretty different from each other.  In most cases, the parents feel like they've gotten stronger and become a better person for having parented a special needs child, they love their child fiercely, but they are exhausted from the constant effort to meet the special needs of their child in a world that's designed for mainstream kids.

I think this book would be most interesting to 1.  People with an Input strength  - if
you like to learn information just because it's interesting, then this book is totally for you; and 2.  people with a special needs child, because you will identify with many of the experiences and feelings described.  I fit in both of these categories, so I loved reading about the stuff I know absolutely nothing about (such as limb lengthening surgery for dwarfs and the debate over whether cochlear inplants are causing a cultural genocide), and the stuff I know quite a bit about (such as feeding tubes and Early Intervention).

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I'm always looking for more book recommendations, so let me know what you've enjoyed reading recently.  

The More Things Change, The More They Stay the Same

This weekend, we visited my grandparents' house.  They live out in the country in central Nebraska, on an acre of land sandwiched between corn fields and farms.  My grandparents have lived in the same house, which my grandfather built, for 35 years.  They are practical and frugal, and they emphasize simple living and time in nature.  I love to spend time at their house - it's very peaceful and relaxing.  

That's a little background to help you understand why I find it so funny when their lifestyle, which has been the same for decades, coincides with modern trends.  My favorite example is trucker hats.  My grandpa has a better collection of these bad boys than Ashton Kutcher.  Grandpa wears them because they provide sun shade and good ventilation.  When I was a teenager, I borrowed some of his hats so that I could look as awesome as my favorite celebrities.    

Here are four ways my grandparents are inadvertently trendsetting now:

1.  Food - My grandparents grow most of their produce in their enormous garden.  This means that much of the food we eat at their house is fresh, locally grown, sustainable, organic, and seasonal.  My grandma makes all breads, pasta, and dessert from scratch.  We often have homemade ice cream and homemade donuts.  Nothing comes from a box; nothing contains preservatives; everything is a real food.  She should open a restaurant and charge $50 a plate for her wholesome, farm to fork meals.  (It should be acknowledged that the side salad sometimes consists mostly of macaroni and mayo, but this article says that's consistent with the real foods movement.)

2.  Eco friendly - My grandparents don't get a regular trash pick-up out in the country, so they find a way to reuse, recycle, or compost much of their trash.  Whatever's left over gets burned right on their property rather than a trash truck driving out to pick it up.  My Grandma is a MASTER at saving and re-using things.  Their carbon footprint is tiny.

3.  Melissa and Doug - G & G have a box of toys saved from when my mom was a kid.  These toys are the same type of thing you would now pay top dollar for at urban boutiques for children: handmade wooden blocks that have letters and numbers painted on the side; toys that encourage pretend play (in this case, old kitchen utensils, old jewelry for dress up, etc.); puzzles that teach fine motor skills; and handcrafted wooden toy trains.  

4.  Unplugged - It seems to be trendy to find a place to escape from the constant intrusion of electronic distractions.  My grandparents have no Internet access and very limited TV access, which is generally only turned on for local news, weather emergencies, and Husker football games.  For entertainment, we walk along the gravel road, listen to birds sing, stop and smell the flowers (literally), and after dark, watch fireflies.  Again, they should charge money for people to access this unbelievably simple, relaxing, present-in-the-moment lifestyle.

I have to admit that I'm a little bit relieved to be back to Facebook and Golden Grahams after our stay in Gothenburg, but I do love my time with my grandparents, and I love how they march to the beat of their own drum.  (And sometimes it's such a great drum that society follows along, at least for a little while.)

Special Needs related Urgent Care Rant

This afternoon, I took Joshua in to an Urgent Care clinic because he's been sick for a couple days and I wanted to get him checked out before the weekend to make sure he didn't need to get on antibiotics.  The doctor thinks it's just a virus that should get better in a day or two, so that was good news.  Also, the Urgent Care in Lincoln is amazingly clean and efficient.  We were in and out in less than an hour.  I attribute this to the overall awesomeness of Lincoln, where even Apria rocks.

Here's where the rant comes in:  First, bedside manner.  When we were going through the general list of Joshua's symptoms, you could tell that the doctor was kind of on autopilot.  That's fine - it's Friday afternoon and she's probably ready to get home to her family and/or knock back an Appletini when five o'clock rolls around.  She's probably dealt with thousands of toddler viruses and ear infections and can diagnose and treat these in her sleep. The irritating thing was that when I told her that Joshua has a feeding tube, her whole demeanor changed.  She did a double take, then asked "why" in a very alarmed voice.  It was like we had entered the world of Grey's Anatomy, where the presence of a feeding tube signals a dire medical emergency.  In reality, Joshua is a very healthy little guy who is not in a dire medical situation *at all*, and I could tell she thought so too because I was getting the overprotective-mother-who-jumped-the-gun-taking-her-son-to-the-doctor vibe until I mentioned the feeding tube, and then suddenly I was getting the why-isn't-this-kid-in-the-hospital vibe.  I understand that the presence of a feeding tube might signal the need for some further conversation about why it's there and how it might relate to his current sickness; I just wish that the initial disclosure of it would've been treated with calm rather than alarm.

Second part of rant: general knowledge.  When the doctor asked why Joshua has a feeding tube, I told her it's because he has Pierre Robin Sequence.  She says she's never heard of it and asks me to explain what it is.  [Note:  this happens all.the.time.  It wasn't just this doctor.]  It's so irritating to go in to the doctor and then it ends up that you are the one doing all the medical explaining.  I know this is an unfair thing to be irritated about.  When I was practicing law, people would ask all kinds of random stuff all the time (for example, "What are the drug laws in the city of Denver?"), and I rarely knew the answer unless it was specifically in my area of practice.  Law school trains you how to issue spot, research, and apply laws, not how to memorize every conceivable law in existence.  I assume that med school works the same way, so I'm not saying that this doctor was doing anything wrong.  BUT, in my dream universe, it would be nice if the urgent care doctor knew more than I did about what was going on with my son's medical condition, or at least had heard of it.  

Rant over.  I hope you have a great weekend!

On perspective in politics

[Note to readers:  For the next few weeks, until Kenny returns from France, I'm probably going to be posting somewhat sporadically and sometimes only a few sentences at a time.  But I'm enjoying blogging, so I'm going to do my best to stay in the habit as much as I can.]

I really enjoyed this article about Abraham Lincoln in the Atlantic.  It talks about how President Lincoln was widely criticized by his contemporaries for the following things: his general character and intelligence, his strategic handling of the Civil War, and his rhetorical abilities (specifically in the Gettysburg Address).  This now seems crazy, as President Lincoln is considered by many to be our best President, with particular strengths in the areas listed above.

The article is a good reminder that history will judge the current president very differently than we do (for better or for worse), and that it's easy to let emotions overcome rationality when you're right in the middle of a situation.  It brings some much needed perspective in this world where talking heads are broadcast on cable news networks 24 hours a day and where Facebook memes can make you feel like our country is about to implode from ineptitude.  I know people who felt like it was a tragedy that George W. Bush was elected and then re-elected; ditto with Barack Obama.  Certainly it's important who becomes president, but there's a reason why people rarely follow through on their threats to move to Canada if so-and-so gets elected.  Because ultimately we still live in a pretty great country, and it is unlikely that the president is going to ruin everything.

Thoughts?  I seem to have lots of politically passionate Facebook friends, so I welcome dissenting opinions here....

Road Trip, Part Two: the Keepin' it Real Edition

This week, we drove from Reno to Lincoln, Nebraska, where we will be spending the next 5 weeks (with Kenny spending the middle 3 in France).  Once again, our road trip went well overall.  Here are the observations from driving, round two:

When I was your age...:  Somewhere in the middle of Wyoming, Joshua started teaching Zoey to make fart noises with her mouth.  And then when she successfully did it, he got mad.  This is just the beginning of payback for all the trouble my siblings and I caused our parents on family car trips.  For example, I used to tattle on my siblings because they were looking at me.  I'm sure this complaint will be coming my way once the kids are able to articulate it.  

Hotels:  If you ever wonder whether a hotel is worth the extra money, the answer is probably yes.

Tube Feeding v. Nursing:  It used to be the case that nursing was easier than tube feeding in every way.  Now, it's more of a mixed bag.  Tube feeding takes more planning on the front end - bringing the right food and equipment, keeping it cool, measuring it out, etc.  Nursing takes zero planning.  But tube feeding can be administered while the car is moving, which is a big plus, and the administration of tube feeding doesn't involve finding a private place and dealing with a squirming child who would rather be crawling -- so for this last leg of the trip, tube feeding wins out over nursing for easiness.  

Rest stops:  Next time I see a toddler pushing chairs all around the corner of a fast food restaurant or an infant eating cut up french fries, I will give that family some grace and think about how that was my family while we were on the road.   

My best travel tip for traveling with kids is variety.  We brought several grocery bags of toys, books, and food, and just kept rotating things.  When they got bored with playing or eating, we would turn on music or sing songs.  When that got old, we would make a stop and let them run around, then restart the whole process.  Fortunately, Joshua is really great at keeping himself entertained.  At one point, he started tickling his own feet, which was funny for us as well as him.    

Long distance driving is like running a marathon:  you can't think about the whole thing all at once or it gets too overwhelming.  You try to just stay in the present, enjoy the scenery, and respond to the needs of the moment rather than worrying about every single thing that could come up along the way.  And you break the trip into segments, thinking about the next stop rather than how many miles / minutes until the whole thing is over.  It's good for me to be forced to think this way, since I tend to be a worrier.  Maybe I'll start training for a marathon when our travels are over.

We will be doing one more leg of travel in August.  Any good tips for the last section of driving?

Reno Wrap Up

We are down to our last weekend in Reno.  It's hard to believe how fast this 6 week leg of the journey went by.  Here are some of the highlights:

• Two trips to Lake Tahoe.  Especially the part where you get over Mt. Rose and see your first glimpse of the big blue lake through the trees.  
• Lots of family dinners.  Anyone who has dined with the Chings knows that the food at these gatherings is delicious and plentiful.  I should list a menu sometime to show that the word "plentiful" really does not do justice to the spread of food at these gatherings.  
• In Virginia, we watch TV using Netflix, so we've enjoyed having full cable this month, especially House Hunters, the NBA Playoffs, So You Think You Can Dance, and Bubble Guppies.  They also have Netflix here, so my mother-in-law and I have been watching Season 6 of West Wing.  
• Attending church while the grandparents babysat our kids.  Normally Kenny and I trade off doing kid duty while the other one attends church, so it was nice to get to go to services together.  
• Joshua and Zoey really got to know and enjoy their grandparents and their cousin / aunt / uncle.  This was the major goal of the trip and it was a big success.
• I met up with some of my former co-workers, enjoyed their company, and in talking about cases, remembered that it's really not so bad to get a few years off from being a lawyer.  

Up next, we drive to Nebraska, arriving just in time for the 4th of July.  Kenny will stay for a week and then head to Strasbourg, France, where he will be teaching a summer course in comparative constitutional law for 3 weeks.  The kids and I will be staying with my parents in Lincoln.  Several people have asked me if I'm disappointed that I'm not going with Kenny to France.  The answer is no, I am relieved.  With two very young kids, my day mostly consists of getting them to eat (especially Joshua) and sleep (especially Zoey), and both of these tasks would be more difficult in France.  Hopefully the opportunity will come up again in the future, because it would be an awesome family trip down the road.  Meanwhile, check back in a month - maybe we can get Kenny to do a guest post about his time in France...

For those in Nebraska, I can't wait to see you soon!

Some thoughts from Henri Nouwen: On Judgment and Gratitude

I just read Henri Nouwen's book "Spiritual Formation" and while the whole book is pretty great, there are two passages that stood out to me.  The first is on judgment:

"Judging others is a heavy load; why not let it go?  Being judged by others is a relatively light load; why worry about it?  Often I have asked myself:  What would it be like if I no longer had any desire to judge another?  Or be controlled by the judgments of others?  I would walk on the earth as a very light person indeed!"  

I 100% agree with this sentiment and it would radically change my life if I could internalize it.  It would be interesting if there was an app that could chart how much of the day I spend judging and feeling judged:  I watch HGTV and judge 20-year-olds for being so entitled and thinking they need stainless steel appliances and granite countertops; I take my kids out to the park and worry that other parents are judging me as the worst mom ever when my toddler starts screeching and my baby starts eating sand; I go to the grocery store and judge the person in the next aisle for the food that's in their cart, but also worry that they are judging me for the very same thing.  And on and on.  How much stress and anguish could be saved if I stopped judging others and worrying about whether they were judging me?  And why is it so hard to cut out all the judging?  Good things to think about.

The second passage I really liked is on gratitude:

"Gratitude is not a simple emotion or an obvious attitude.  It is a difficult discipline in which I constantly reclaim my whole past as the concrete way God has led me to this moment and is sending me into the future. It is hard precisely because it challenges me to face my painful moments -- experiences of rejection and abandonment, feelings of loss and failure -- and gradually to discover in them the pruning hands of God purifying my heart for deeper love, stronger hope, and broader faith."

Nouwen is saying that we should be grateful for the good *and* the bad stuff in our life because God is using all of it to grow you.  I tend to think of gratitude in a much different way - I think of it as being thankful for material blessings, positive experiences, new opportunities, and good things happening to my friends and family.  And let me tell you, I struggle even with this "easy" type of gratitude - it's so easy to let the good things in my life become the status quo and start wanting more.  But I agree with Nouwen's characterization of gratitude, and while I'm not even close to actually feeling grateful for the hard things in my life, it's helpful to read passages like this and reflect on how hard experiences move us towards deeper love, stronger hope, and broader faith.

I just scratched the surface with my reflections on both of these quotes, so I would love to hear your thoughts and experiences with these ideas.

Top 10 reasons i love (but also sometimes hate) Facebook

Facebook has been getting a bad rap lately.  Criticisms include that it makes us feel bad about ourselves, that it causes people to have less real connection with each other, and that it causes people to waste too much time.  I'm not suggesting that you should completely ditch your real life friends and family in order to spend all day on Facebook, but I think there are some really great things you can do with Facebook (as well as things that I sometimes love and sometimes hate, listed at the bottom).  Without further ado...

Things I love about Facebook:

1.  Sharing important information -- When I have a big announcement to make, Facebook is a very convenient one stop place to announce to everyone, all at once.  You don't have to compile a big email list or make phone calls one by one - you can just post your news and everyone will see it.  For us, this was especially convenient when Joshua was having lots of surgeries and we wanted to get news out about it right away, but didn't have time to make contact beyond a Facebook post.
2.  Allowing you to be social even when you're isolated -- Right now, I spend most of my day at home with J and Z.  I love them very much, but it gets lonely to spend the day with kids who aren't able to have a conversation with you.  Facebook allows you to interact with others.  It may be more shallow than a real life interaction, but it's way better than nothing, which is what the alternative often is if you're caring for young kids around the clock.  
3.  Hearing other people's important information -- I love hearing when people got engaged, had a baby, took a new job, etc.  I know that for some of my Facebook friends, I wouldn't be hearing about these things (at least not in a timely way) if it wasn't for Facebook.  It's like all the stuff you would hear at a class reunion, only you get to see it happening in real time.
4.  Crowdsourcing information --  You can post a question and very quickly get recommendations for a good HVAC repairman, how to administer medicine to a baby, what's a good book to read, etc.
5.  Connecting with long lost friends and staying in touch with friends who are far away -- I've moved around a lot in the last 10 years:  I've lived in 6 states for at least a year, and 3 more for at least a month.  I've made friendships that were fiercely close in that time and place, but that have been hard to maintain once we move into different time zones and life stages.  Facebook allows you to stay in casual contact with people who were at one time your BFFs and who you still care about.
6.  Celebrating people's occasions --  It's helpful to have a website remind you when it's someone's birthday, or wedding day, or graduation day.  And it's fun to get a flood of well wishers when it's your special day.
7.  Connecting with a support group --  This has been the biggest one for me.  Facebook has allowed me to connect with other parents of kids who have Pierre Robin Sequence and other parents of kids who have feeding tubes.  I don't know other parents in real life whose kids have these things, and it has been enormously helpful to get practical and emotional support from other parents who are going through the same thing.  It's also gratifying to be able to give other parents support.

Things I love / hate about Facebook:

8.  Hearing other people's info, small  - I might be in the minority here, but I like hearing what people ate for lunch.  It is my Input (from the Gallup Strengths profile) - the more information, the better, and it doesn't have to be particularly consequential to be interesting to me.  BUT, there is definitely a "TMI" line where things get a little too mundane, too personal, or too gross to belong on Facebook.  It's hard to define, but it's like the obscenity standard - you know it when you see it.
9.  Getting in debates / sharing political ideas - It used to be the case that it wasn't polite to talk about religion or politics, but this is not the case on Facebook.  For the most part, I love to see where people stand on politics, even when I disagree with them.  But sometimes, either the original post or the ensuing debate becomes nasty, and this is what I hate.  Also, I've found that I usually regret it when I get into a political debate on Facebook because it's just not the right format to discuss complicated ideas and it doesn't allow you to convey non-verbals like tone to the other person, which in real life might keep the conversation more civil.
10.  Seeing people's travel pictures --  I love this because I get to live vicariously through you fabulous world travelers.  I hate it because it makes me jealous :).

What would you add?

Reno Update

We are two weeks into our summer vacation, so I'm posting a family update.  The short version:  so far, so good!  The grandparents have been very generous about babysitting, so Kenny and I have been able to spend tons of alone time together, which is something that we rarely get to do in Virginia.  We have done activities ranging from the practical (car seat shopping) to the romantic (anniversary date) to the hipster (brunch).

Joshua is enjoying spending time with both grandparents and with his cousin Lewis.  We had some concerns about his shyness, but he quickly became comfortable with all the relatives here.  Lewis and Joshua enjoy throwing rocks together, Grandpa Keith and Joshua jam out to the ukelele, and Grandma Betty and Joshua run laps around the house together.  Joshua's speech and eating don't seem to be suffering from the break in therapy.  His speech continues to improve, probably from getting bombarded with new people and experiences.  His eating is about the same- he still eats a limited range of foods, limited volume, supplemented daily with tube feeds - but we haven't seen any eating setbacks since we've been on the road, so that's positive.  We are having some trouble with Joshua not wanting to share toys with Zoey, so if anyone has tips on how to work on sharing, I am all ears!

Zoey is at that end of baby / beginning of toddler stage where it seems like she is developing new skills and getting more interactive every day.  Since we arrived, she has learned to pull up to standing, do motions that sort of look like waving and blowing kisses, and start to make sounds that are more like words (like "ba" for ball).  It is really interesting to watch a typically developing baby grow, because these new skills come so fast and so easily.  You don't have to do anything except let them loose on the floor and they basically figure it out on their own!  Since Joshua had all the medical interventions at the beginning, he missed some early development, so we had to work really hard with weekly therapies and daily exercises to get him caught up to the point where he could do things like crawl and pull up to stand, so it's astounding to watch the difference.  Zoey is also at the stage where she will stick her finger in a light socket, pull dishes off the table, rip pages out of books, etc., so we are keeping a close eye on her.

We have about four weeks left in Reno, so we are looking forward to more family time, a trip to Tahoe, and whatever other unknown adventures await this month.