Snow and Spring

 

As has been well reported, the Sierra Nevadas got a historic snowfall this year.  Mountain ski resorts got around 600 inches (50 feet) this year.  That's about four times as much as usual!  Reno got a much milder version, but we also had WAY more snow than usual.  And it didn't come in huge storms, but rather a few inches at a time more days than not through the first three months of the year.  

We desert dwellers are not used to this kind of precipitation, cloud cover, lack of sunshine, and having to make plans around the weather for months at a time.  For some, this caused property damage, power outages, and inability to work.  Our family was fortunate not to have any big problems, though we did have memorable moments - one being that our church couldn't meet at its regular location due to snow, so instead we met at a pizza parlor (and the kids will forever remember the pizza brunch and arcade games that followed).  But we are all very, very ready to be done with the snow and back to the reliable sunshine that we know and love.  

Now that winter weather appears to be drawing to a close, I want to write 4 good things that came out of the epic snowfall this year:

1.  First, a fun one - ample opportunity for snow fun.  Last year, it didn't snow a single time in January or February.  There were zero snow angels, snowmen, snowball fights, castles built out of icicles, night time snow walks, or sledding.  This year, we had an abundance of all these activities on pretty much any day that it was convenient.  Skiing has been great, and will go into late spring.  Lots of good snow memories were made for all of us this year.  

2.  Water helps persistent drought.  This is maybe the most obvious benefit to the population at large: we badly, badly needed this precipitation.  We've been in drought for years, and many of us have prayed for more water, relief from wildfires, and things like that.  This year's snowfall and seeing my own ungrateful response as the snowy days just kept coming reminds me of the story of the Israelites who providentially get manna from heaven - food they desperately needed - and then they get tired of it and start complaining because they would prefer some variety, something tastier.  It's easier to say on the other side of winter, but what a blessing to get all this water, and also it's good for me to see how easily my heart can turn to complaint.  

3.  In all kinds of crazy weather, we remember how small we are and that we are not in control.  I grew up in Nebraska, where we get spring storms of epic proportion.  The towering wall clouds that roll in over the plains produce everything from softball sized hail to F-5 tornadoes to lightning storms where the thunder shakes the frame of your house.  It's exciting and sometimes terrifying, and it reminds me how small I am.  A snowpack of dozens of feet along the side of a mountain highway, or an avalanche tearing down a mountain, has a similar effect - it reminds me that I am not the one in control, I am not the one who controls the wind and the waves - and in this, I can be reminded of the one who does control it all, and be in awe.   

4.  We celebrate the world coming back to life in spring.  The relentless precipitation has produced a deep sense of longing.  Every year, it's great to hit the point where you get longer hours of light, where you can feel the warmth of the sunshine on your face, and where you start to see the flowers bloom.  But especially this year, where the natural world has been hidden away by a snow cover for the first quarter of the year and where we've felt extra cooped up inside, the transition into blooming and green and warmth feels even more like *celebration*.  Hurray for new life, for the world made new, for beauty all around.  As they say, absence makes the heart grow fonder:  I appreciate all the signs of spring more when they've felt so gone this winter.  

Cheers to spring!

A Place where Shadows Give way to the Real, and Circumstances Can't Change the Way that I Feel

This is going to be one of the blog posts where I take different ideas that have been floating around in my head and try to weave them together - sometimes that works and sometimes it doesn't - here we go!  The theme, in brief, is trying to think more about the things that matter using Christian meditation.

As I write this, we are right in the heart of Lent.  My church doesn't practice Lent the way that many liturgical churches do, but I once learned that idea that Lent is a spring cleaning: a time to take inventory of things that we want to keep and things that we want to get rid of, in order to make space for God.  So I do try to spend a little time in these weeks thinking about what could I change in my time and thought patterns (both what could I toss out and what could I add in) that would make more room for God.  And there's a song that has given me inspiration in this year's spring cleaning - it's a Christian hip hop song called, "Take Me There" by Trip Lee.  (Some of you may not have known that Christian hip hop is a thing - I linked to the song so you can get your first taste of it :).  The line I've been thinking about a lot, which describes heaven, says, "A place where shadows give way to the real, and circumstances can't change the way that I feel." 

First, let's look at "a place where shadows give way to the real".  There's so much in this world that is fake, deceptive, and all about appearances - these shadows are everywhere, and they obscure the light for all of us.  How beautiful, and how rare, is it to befriend someone that gets more authentic, more deep, more lovely the more you get to know them?  (None of us will be 100% this way, but there are people who stand out as being more like this.)  They put a ton of thought into the things that matter and hardly any thought into the things that don't.  They follow the instruction of Philippians 4:8:  "Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things."  I want to know these people, and I want to BE this person.  But how do you get to be that person, living in this world with shadows everywhere?  

The second part of the line is "circumstances can't change the way that I feel".  Our culture urges us to follow our heart, which usually means follow your feelings.  You see this message on t-shirts and in memes, and it sounds pretty great at first.  The problem with feelings is, they go up and down - they don't always steer you the right way - they are enormously affected by your circumstances.  And it's hard to sort out how much you're being ruled by circumstances when you're right in the middle of things.  It never feels like my heart is being influenced by things like sleep deprivation, stress, hunger, illness, hormones; it never feels like advertisements influence me; it never feels like I'm being anything but rational when I follow my heart.  But if I look back from the distance of years, it's much easier to see that circumstances have hugely changed the way I felt about all sorts of things.  The Bible affirms that we shouldn't just follow the ups and downs of our feelings - Jeremiah 17:9 says:  "The heart is deceitful above all things, and desperately sick; who can understand it?"  I want to be the person whose feelings are not ruled by circumstances, but who can attach my heart and its feelings to a sure and steady hope outside of myself.  But again comes the question, how do you get to be that person?

Both of these things don't just happen.  They are counter cultural, and counter to what comes easily.  So how do we get there?  One practice that I think will be helpful is Christian meditation.  My pastor recently gave a talk on meditation, and he explained that it works well as the bridge between Bible reading and prayer.  After you've taken in some ideas from Scripture, you take time to think about it, digest it, let it sink in, dwell in it.  Find the pieces of reading that cause you to be astounded by God.  And then taking the time to think about it and let it sink in is going to change how you pray, and with regular practice, change the kind of person you are.  If you're dwelling on the things above more deeply and more often, it would hugely affect your ability to see the things that are real, to care about the things that matter and not care about the things that don't.  And it would also sharpen your focus on the hope we have outside of this life, which would cause your feelings to be less battered about the difficult circumstances we all go through in this world.  

So my goal going forward to is to spend more time in meditation.  I would love to hear from those of you who regularly meditate about how you do it and the effects you have seen.  

On Your Team

This week in February brings both Super Bowl Sunday and Valentine's Day!  So I thought I'd write about something that brings them both together:  loving someone well means to be on their team.  (This post will go towards a faith conclusion.)

Who does this apply to?

It's for all the kinds of love!  Romantic love, familial love, friendship, church body - anybody you're in committed, loving relationship with.

What does it mean to be on someone's team?

It means you're moving towards the same end goal together, and that their good and your good is bound up together.  It means you're cheering for them in strength and helping them up  in weakness.  It means you have their back.  It means you celebrate together and suffer together.  It means when you make a play, you're thinking about how that's going to work for the greater good of the whole team and not just how it's going to make you look awesome.  It means you as an individual are working hard at whatever your role is so that the team can thrive.  And hopefully, it means you will have lots of fun times and friendship built along the way.  These principles make for a strong team, and they also make for a strong and lasting relationship.

(I did a whole blog post on team sports awhile ago because they are my favorite.)

That's pretty straightforward?  

It makes sense intellectually, and it's the ideal to strive towards, but it's so hard to put into practice.  I'm not especially good at any of this, and I'm writing this post to preach it to myself as much as anyone.  It's hard to be selfless and put others first, especially those I'm around the most (and those are the ones I love the very most). 

And then add to this, the inevitable bumps of life, like:  the adolescent who doesn't want to be on your team.  The relative who feels different about politics and this drives a wedge in your relationship.  The friend who is going through a season where they're always too busy.  When you and your partner disagree on something important.  (These examples were easy to think of because these have all been me.)

So we have the goal of being a good teammate, and then we have the challenges internally and externally to making this goal a reality.

So how do we overcome these challenges?

1. We can ask God to help us.  This is always a good first step when we face a task that's too big for us.

2. We can remember the incredible grace and forgiveness and unconditional love we've been shown, and be humbled at the much smaller ask that's being made of us towards the relationships in our life.   

3.  We can look to a future when relationships will be perfected.  It won't always be a struggle to put others first, and we won't always be dealing with brokenness in ourselves, our loved ones, and the world.  Someday this will all be easier, and we can be encouraged looking to that future.

Happy Valentines Day to all, and sending love to those of you reading this who are my real life loved ones!  Thanks for being on my team!  

****

Caveat:  I've said this before and I'll surely say it again - one of the hard things about writing a blog is that you never know exactly who will end up reading it.  So I want to be sure to say that I'm not writing this to condone situations of abuse, and I'm not writing this to condemn situations where relationships have already broken.  Sending nothing but love, not advice, in those cases.  

4q: what i wish i wouldve known

My blog mostly gets views when I post something new - otherwise, it stays pretty quiet.  The one exception to this - the one post that gets views every single month since I posted it years ago, that gets searched from all over the world, is my post about 4q deletion syndrome.  I assume people find it because 4q is very rare, so this blog post is one of the few search responses that come up.  

So I'm writing a new post for that audience - if you are the parent of a child with 4q deletion syndrome, and you made it to this blog looking for information, here are some of the things I wish I would have known from the start of our journey.  I'm not a doctor, just a parent, so any medical questions should be taken to a doctor.  And I'm an American, so many of the things about health care and education might be different in different countries - but hopefully there are some ideas here that can help you.

My son Josh is currently 12 years old.  Here's his medical story; here's a description of the memoir, written by his dad, about what the first few years were like from the parent's perspective; here's the post about what it was like when we got his genetic diagnosis; and here's how he's doing now.  And here are some of the things we've learned along the way:

First things to do when you get a genetic diagnosis:

1. Check out the Unique website.  They have a section called "free disorder guides" that is by far the most helpful compilation of information I've seen about the various genetic diagnoses.  You will want to know your child's exact diagnosis to find the guide that is most helpful to you.  In 4q, you will want to know if your child's deletion is interstitial (in the middle of the chromosome) or distal / terminal (at the end of the chromosome), and also how big the deletion is.  These things will help you figure out which guide to get, and which parts apply to your child.  (It will also help many of your specialist doctors to know the exact diagnosis, as they research questions.)  
2. Look up 4q deletion syndrome support groups on Facebook: this one and this one are both really good.  These groups are private, and the parents have a wealth of knowledge about all kinds of things related to 4q.  They are also an excellent source of emotional support, especially in those early days.  I would not know a single other parent of a 4q child without these groups, and now, thanks to these groups, I am connected to hundreds.
3. Find a really good pediatrician.  You will likely be dealing with many doctors and therapists in the early days, and the pediatrician is the doctor who knows the whole medical situation and will know where to refer you as different problems arise, and who keeps track of all of it as things move along.  They will also be the easiest office to get into quickly and the easiest doctor to get on the phone same day.  Find someone who is knowledgeable, kind / encouraging, and great at processing referrals and prescriptions and all the paperwork.
4. If you child is ages 0-3 and you live in America, contact your local Early Intervention office and request an evaluation.  This program provides free in home speech therapy, occupational therapy, and physical therapy to children who qualify.  Therapies are SO effective in these younger years, this is a good thing to tackle right away.  If your child is over age 3, then consider getting evaluated through the school system or by private speech and occupational therapists, as therapy will likely remain an important support through much of childhood.  
5. Again on Facebook - check to see if there is a local special needs group.  This is the best place to get feedback on different local doctors, schools, therapies, adaptive programs - all things pertaining to the world of disabilities.  It's also a good place for emotional support.  

Things to know if your baby is born with Pierre Robin Sequence and / or uses a feeding tube:

1.  If you have concerns about breathing, don't wait - take it to the doctor right away.  Ask about a sleep study. 
2.  If you have concerns about your baby aspirating while eating, same thing - go to a doctor right away, and ask for a swallow study.  
3. If your child's jaw needs surgical intervention and they are offering the choice between jaw distraction and tongue lip adhesion, I would strongly suggest doing the jaw distraction.  I would also strongly suggest that it's worth traveling if they feel that this would be the best intervention for your child, but they can't do it at your local hospital.
4. If doctors anticipate that your child will need a feeding tube for more than a couple months, it is a good idea to get a G-button rather than an NG tube as soon as possible.  This will make life easier for you and will help prevent oral aversion.  

Our son Josh had a feeding tube for five years - here's a post about what I wish I would have known from the start, here's a link to a great website with tons of information about feeding tubes, and here is his story of weaning from the feeding tube.

Things to know related to doctors:

1.  If it's possible to see most of your doctors within one hospital system, do this.  The more doctors can see each other's electronic notes, the better overall picture each of them will have about the health of your child.  This isn't always possible - we live in a location where most of our doctors do not electronically file share, and where we have to go out of state for some of the care - in this case, do your best to keep all the paperwork and to write down the important things from appointments, so you can communicate it to other doctors.  

2.  Know that specialist doctors are great at their practice area, but often are not thinking about the rest of the medical picture.  So, for example, if one doctor wants to prescribe a medication that will suppress your child's appetite, and another doctor is trying to help you increase eating so that you can wean your child from a feeding tube, it will be up to you to communicate to each doctor that these things are working against each other, and it will probably also be up to you to decide which piece takes the priority.  

3.  Keep paperwork from doctor's appointments, not just to share with other doctors, but because you will need some of it in the future to help qualify for insurance coverage, school services, and things like that.  

4.  You will meet some absolutely fantastic doctors - hang on to them, show them gratitude and appreciation, do as many of your visits with them as you can.  And then you will meet some doctors who make you wait hours for appointments every time, who will not get around to looking at the studies they ordered for you until you have called them multiple times, who will not treat you or your child with thoughtfulness or respect - these are signs to look around for a different practice.

Things to know related to school:

• After age 3, many of your child's therapies will be provided through the school system.  Sometimes it's still helpful to supplement this with private therapy if you are able to, such as for feeding therapy and help with sensory needs.  These therapists can be really helpful in teaching you how to work with your child at home, and they can help with a really wide variety of developmental needs.
• If your child qualifies for special education services, all of that will be contracted in a document called the "IEP" - here is a post I wrote about IEPs.  And here is a very helpful website that answers tons of questions about IEPs.
• Like the doctors - some of the IEP team members will be the best humans you've ever met, who would do anything to help your child; but you might meet others who make everything a fight.  If you have trouble getting school services for your child, search for IEP advocates in your area.  You can often get affordable help from a local non-profit.  

Things to know related to health insurance / money:

1. In many states, children with a disability can qualify for Medicaid even if the family would normally be over income.  Google "Katie Beckett Medicaid" and see if your state has this program.  Even for kids with good private health insurance, Medicaid as a secondary insurance can be such a help in covering the deductible / copays.  Also, many private insurances limit their coverage of private speech therapy and occupational therapy, but Medicaid will cover it.  
2. If your baby has special medical equipment such as a trach, oxygen, or a feeding tube, you might be able to qualify for nursing care.  This is worth investigating if you have an adult staying up all night every night to watch the medical situation, or no one is able to babysit for your child because of the medical complexity.  
3. If you need to travel for medical care, there are sometimes nonprofits that help with these costs.  Insurance can sometimes help with costs.  Many children's hospitals have a Ronald McDonald house, which provides rooms at a greatly reduced rate and homecooked meals most nights.  Shriners hospitals provide rides to families traveling from out of town.  It's worth asking around - if your children's hospital has a social worker, they should be a good source of information about this.

Last words of advice and encouragement:

• Listen to your instincts - you know your kid best!  If you feel like something should be checked out with a doctor, or there should be a conversation with the school - follow that intuition!
• Be the squeaky wheel - this is not comfortable for many of us (me included), but if your child needs some kind of accommodation or therapy or medical treatment, don't be afraid to ask, and keep asking until it gets addressed.
• It gets easier!  You will get better at navigating the doctors, the systems, the school meetings, and your child's needs.  Before you know it, you will be giving advice and encouragement to other parents :).  
• Our kids are the absolute best - you will be amazed how, along with the struggles, comes extra reasons for joy and celebration.  
• I wish I could have seen from the very beginning what life would look like at age 12.  You start out in the most intense part, with hospitals and surgeries and countless doctor's appointments.  Now, Josh's life is mostly school and playing outside and Minecraft - it would've been so reassuring to see from the start this happy, thriving 12 year old.   

Thanks for reading! 

 

Books I Read in 2022

Welcome to my annual favorite books blog!  I look forward to this one all year - it's fun to remember favorite books from the last year, and it's fun to hear from you about what you also enjoyed.  Here's pics of the books I read in 2022 (thanks Goodreads!), and here's a link if you want to learn more about any of them. Scroll down to see the list in writing!

First, I want to give a shout out to libraries.  Libraries, we love you!  I counted, and 47 of my books were library books this year.  And this doesn't count the many dozens of picture books we've checked out to supplement all the homeschool subjects, or cookbooks I previewed before buying, or (new this year!) sheet music that I attempted to play before realizing it was way beyond my abilities.  It also doesn't quantify all the story times we attended when the kids were toddlers, the craft projects and art displays and therapy dog visits we've happened upon when stopping by, and the warmth of the friendly librarians who make all of this happen.  Thank you, librarian workers, for all you do for our communities, and thank you libraries for the plentiful supply of books.

Now, we turn to my favorite books of the year!  I want to add - every book that appears above I would give a thumbs up in one way or another.  I quit early on if a book's not hitting for me, so if it makes it on the "read" list, then there was something compelling about it.  And I would be thrilled to discuss any of them, above or below.  Having said that, these are the ones that stayed with me the most.  Here we go...

Middle grade:

"The Silver Chair" and "The Last Battle" by C.S. Lewis

"Pony" by R.J. Palacio

"From the Mixed Up Files of Mrs. Basil E. Frankweiler" by E.L. Konsburg

"The Ickabog" by J.K. Rowling

Books I'm still Thinking About:

"Even Better Than Eden" by Nancy Guthrie

"Why God Makes Sense In A World that Doesn't" by Gavin Ortlund

"The Brave Learner" by Julie Bogart

"The Tech Wise Family" by Andy Crouch

"Meditations" by Marcus Aurelius

"Out of the Silent Planet" and "Peralandra" by C.S. Lewis

Favorite books where you get swept up in the story:

"Illusion of Control" and "Loyal 2 Chaos" by Kenny Ching

"Greenwood" by Michael Christie

"Love and Saffron" by Kim Fay

"Remarkably Bright Creatures" by Shelby Van Pelt

"Lesser Known Monsters of the 21st Century" by Kim Fu

Amazing Writing:

"A River Runs Through It" by Norman Maclean (specifically the first story)

"To Bless the Space Between Us" by John O'Donohue

"One Long River of Song" by Brian Doyle

"The Power and the Glory" by Graham Greene

"Small Things Like These" by Claire Keegan

One Miscellaneous Other That I Really Liked:

"What I Talk About When I Talk About Running" by Haruki Murakami

These are my favorites of the last year!  Please tell me if you've read any of these and what you thought, and also what books you've read recently that you loved.

Light in Darkness

It's time for the annual Advent post!  I want to start off by saying, thank you to all of you who read this blog.  Like for many of you, our holiday season gets pretty crazy, and most of the thoughts that run through my head are more of the "to do list" type than the "reflection" type.  (Like:  "Are Christmas cards still 40% off?  Did I get the right shade of lipstick for Ivy's holiday recital?  Did I get the white elephant gift for this gathering, make the cookies for that one?  What events will make this holiday season fun for the kids?!?"  Etc.)  It's easy to lose the forest for the trees, and so it's a gift to have this space to do a little reflection, and it's an even bigger gift to have people to share it with.  

This year, my Advent thoughts keeping turning to the idea of light in darkness.  So much of life can feel like darkness.  There's the times of waiting - for a diagnosis, for a job offer or a turn in finances, for answers.  There's the times of longing - for a partner or child or friendship, for a difficult situation to resolve, for physical and emotional pain to ease.  There's times of loss - death of loved ones, end of relationships, big changes that we did not choose.  It's hard to see the way forward, and it can feel like grasping around in a dark room.  

But it's in the darkness that light is so powerful.  I notice a full moon, or a sky full of stars, or a candle in a dark room, or the lantern in the tent, more than I take note of the blazing noontime sun.  It's the contrast - even a little light changes the scene entirely.  We notice and appreciate light more when it's breaking up darkness, rather than when it's adding on to an already well lit area, and what a beautiful thing the longed for light is.  

And then I think about how much light in darkness there is in the Christmas story.  There's the brilliant star that guides the wise men on their journey to see baby Jesus.  There's a multitude of angels that appear brightly in the night sky to announce the news to the shepherds.  These things to symbolize the biggest, most glorious, most hope filled light that Christmas brings:  God coming near, becoming human, in the form of a baby boy.  This baby fulfilling so many prophesies, bringing the answer to so many longings, relieving so much time in darkness.  That baby growing into a man, experiencing the darkness of this world with us, experiencing pain and loss and rejection of the deepest kind.  And through an excruciating death, followed by the resurrection and defeat of death and darkness, bringing the light of salvation.

If you're in a season that feels like grasping and longing - like darkness - I hope that the light of the Christmas season shines extra bright for you this year.  And for all of us, I hope that even amidst the hustle bustle, that there are moments where we see the beautiful light in darkness.

Thankfulness for God's promises

Every November, I do a post that relates to gratitude.  This year, I'm writing about thankfulness for God's promises, along with an idea to try in your prayer life.  (This is inspired by my friend and mentor Kim, who's been the inspiration for half of my posts this year :).  

Normally, I approach prayer something like this:  I pray through a list of requests about things that are going on in my life, or things that are going on for my family and friends, or things that are going on in the world.  If I'm having a good day, I will throw in a few thank yous, praises, and confessions, but that's a whole separate part of the prayer.  The idea to try is this:  combine thankfulness for God's promises WITH your list of prayer requests.

What does this look like?  Let's say I'm feeling anxious.  I would say, "Thank you, Lord, that you give us peace that passes understanding, and I pray for that peace in this anxiety provoking situation."

Other examples of promises where you can combine thankfulness with requests:

• God is near to the broken hearted (Psalm 34:18) - I pray this one for people who have recently suffered loss of a loved one or are struggling in a relationship.
• God daily bears our burdens (Psalm 68:19) - I pray this one particularly for those with a disability or chronic pain / illness, or who are caretakers for someone with a disability or chronic illness.
• God is working all for our good (Romans 8:28) - I pray this for friends who are feeling discouraged or stuck, or are in a hard situation.  
• God strengthens us (Isaiah 40:31) and gives us rest (Matthew 11:28-30) - I pray this for friends who are feeling exhausted by work, responsibilities, or life circumstances.
• God gives us peace (John 14:27) - I pray this for those who struggle with anxiety and depression.
• God gives us wisdom (James 1:5) - I pray this for friends who are looking for guidance or trying to figure things out.  
• God loves us (this is throughout the Bible, but i love this one:  Zephaniah 3:17) - I pray this for those who are feeling unloved or who don't know God's love.  
• God is with us (Psalm 23) - I pray this for those who are feeling lonely, or like they are facing something too big for them alone.  (Also a perfect one to think about heading into Advent season!)

And I pray these for myself, because I need to hear these promises too.

What was the result?

I have to admit that I was skeptical whether a change in prayer format would make any difference.  Probably like many of you who have made it this far into the post, I regularly read and think about these promises, and it didn't seem like it would make that much difference to switch the order of things around.  

However, I gave it a try for a week, and this is what happened:  A more faith-filled, joyful prayer life!  Why?  First, it ensured that I was regularly meditating on the promises of God, rather than just getting to it when I have plenty of time and motivation.  Starting with a reminder of all the good that God is working all the time is so encouraging.  And to go with the theme of Thanksgiving month -- it causes gratitude for all the goodness we're already basking in, all the time, and usually without even noticing.  Second, it makes you think (and sometimes think hard) about how the promises of God link up with the difficulties of life - and once you've made that connection, it stays, and it continues to encourage.  

I've gone back to praying in my previous style - just saying requests rather than turning them into a gratitude - but even having done my prayers like this for a short time has really changed my thought process.  I'm much more often remembering the promises that link up to those requests at the close of my prayer time, and this is an encouragement and a faith boost.  I would encourage all of you to give it a try!

Happy Thanksgiving!