When It Feels Like Forever

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IMG_5859.JPGOn Friday I came home from work and dug around in old shoeboxes, looking for pictures of myself in high school because I’m teaching high school again, and nothing makes you want to confront your hormonal, opinionated, teenage self like being in a room with 172 hormonal, opinionated teenagers for seven and a half hours a day.  And if you find yourself engaging in this activity and you’re like me, you’ll probably spend an evening laughing and cringing in equal measure.  #BLUEEYESHADOW, anyone?

It’s jarring to see a picture of yourself that’s at least fifteen years old, and yet to simultaneously remember that life seemed foreverlong when the photo was taken.  I vividly remember feeling like the four years I spent in high school were four of the longest of my life.  It wasn’t one of those “I blinked and I was sitting at my graduation” experiences for me.  While I had wonderful friends and lots to do and was generally happy, I was very aware (or perhaps really, really hopeful) that I wasn’t “peaking.” And I mean, who wants to peak, ever?  I carried, even then, a distinct knowledge that these were not the best years of my life.  (Please, please, don’t let these be the best years of my life.) I also remember thinking that things were A VERY BIG DEAL that turned out not to be A VERY BIG DEAL almost on a daily basis.

(Here’s a point of reference re: my feelings on being in high school.  Koby and I often talk about what age we’d like to be if we could be any age.  His is always “seventeen” -which always HURTS MY FEELINGS KOBY- and mine has been my own current age, since we started playing this game seven years ago.  A few years back, I had a dream that I was fifteen again AND IT WAS AN ACTUAL NIGHTMARE.  I woke up furious because I couldn’t drive and I had to ask teachers to use the restroom.  So no, I wouldn’t relive high school even if you paid me untold amounts of money.)

And so I sat two days ago as a thirty year old, looking down at the photographs of my teenaged self, and wondered what I would say to a student who currently feels as if high school is something to be endured.  (Because I.  FEEL.  YA.)  I composed something in my head; it was a montage of clichés like “It gets better,” and “This too shall pass,” and lots and lots of reflections on the importance of attitude and perception.

But then I thought a little bit more.  When we look over old pictures, run into old friends, or otherwise come in contact with bits of our past and cringe it means we’ve grown, and therefore we shouldn’t be ashamed of whatever is behind us.  I definitely cringed going through the shoeboxes of snapshots, but then I wondered at how much I HAVEN’T changed.  I’d like to give my high school self a little bit of credit; I’d like to reach through the picture, hug her neck, and cheer her on.  When is the last time you endured something for four years?  Four years is a long time!  And high school is rough.

I remember being in a panic while Knox went through a biting stage when he was two years old.  I was convinced it was never going to stop.  That phase probably lasted two months or less.  Potty training definitely didn’t last four years, but I felt certain that every failure permanently altered our lives.  A few (many) times since becoming a parent, I’ve called my mom in “I’M SURELY MESSING THESE KIDS UP” moments.  She listens, occasionally gives direct advice, doesn’t minimize my problem, always tells me I’m doing a good job, and then when I won’t shut up about it, reminds me that, “This too shall pass.”  It’s sometimes the best thing someone can do for me in those moments.

And so I began composing my encouragement to the adult enduring moments of trivial frustration that feel like the absolute end of the world and don’t feel trivial at all, thanks.  It was a montage of clichés like “It gets better,” and “This too shall pass,” and lots and lots of reflections on the importance of attitude and perception.

But then I thought a little bit more.  What about those moments when we’re keenly aware that we might be living one of our best days?  Suddenly, “This too shall pass” takes on a darker, more poignant meaning.  It’s why mothers cry over their kids’ tiny socks when nothing is wrong and why the guys who actually really loved high school try valiantly to impress upon teenage athletes to cherish every game.  Two weeks ago, Knox started kindergarten, and Koby and I are still bringing ourselves nearly to tears when we talk about it privately.  “This too shall pass.”  SHEESH.  And to those living what must surely be their darkest, their own periods of monotonous endurance?  How can I say, “It gets better”?  To both these friends I can only offer the same trite phrases, and I hope that deep down they do believe that wonderful things lie up ahead despite what’s been or will be left behind. 

My internal letter of encouragement for a select few became relevant to everyone I’ve ever known.  It’s been a montage of clichés like “It gets better,” and “This too shall pass,” and I managed to leave out most of my reflections on the importance of attitude and perception.  

Knowing that no earthly situation can be sustained eternally has been a point of comfort for me, even while it means that the beautiful things (like our kids being young) don’t last forever either. 

Whatever you’re going through, it can’t be forever here.  For better or for worse.  Revisiting this gives me clarity; it gives me encouragement when times are challenging, mindfulness when times are precious, and grace that allows me to feel my feelings and keep moving, dang it.

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Sharks

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IMG_4961Today I’m thinking about inherited things.

And I’m thinking about fears – some inherited, some learned.  Some that seem to spring up ‘de novo,’ out of nowhere.

I love to be outside, but I loathe bugs and itchy grass.  And honestly, the whole of Texas in August, while we’re just listing things.  I love roller coasters but I’m scared of heights.  There are many things that I never thought twice about before but that terrify me now I have children.  I think Knox inherited some of my aversions – or maybe he’s picked them up, I can’t really be sure.

We don’t have television, but I get enough of the news.  In some ways, our world feels safer than I’m sure it ever has before.  Most of us have protection from the elements; we aren’t in danger of wild animals, the weather, or our neighbors raiding our property for food.  But in other ways, I taste fear, overwhelming fear, all around me.

It can be paralyzing.  I see what it does – it shuts us away.  I’m not talking about the rational, almost DNA-infused fear that we have of things that will kill us and have for millenia.  Snakes, spiders, large toothy animals.  Or maybe I am talking about the same fear because maybe it’s nearly innate, but one we have to rally against and identify in our own heads when it comes, nevertheless.  I’m talking about the kind of fear that breeds and hates.  The kind that keeps us at home when we’d wanted to go out. The kind that keeps us from asking, questioning, opening, trying, or listening.

Knox is scared of sharks, but he can’t get enough of them.  I remember being a kid and checking out a book about spiders from the school library and forcing myself to look at all the (disgusting, horrifying) pictures.  So, I get it.

But he doesn’t want to swim in the ocean.  He’s pretty adamant about it.  Ignoring the fact that we have exactly no plans to visit the coast anytime soon, today I found myself emphatically assuring Knox that swimming in the ocean is fun and wonderful and most people do it and are never even near a shark.  It’s really important to me that he gets that.

I don’t want my son to miss out on swimming in the ocean because of the sharks.  Any kind of shark you can imagine.

I want to raise someone who is bold and wise, who will do things and speak up and live because of what and Who dwells within him.

… Except four-wheelers.  He can’t ride those.

How do you talk to your kids about fear?

Worthy Origins

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Where I live, it’s been raining heavily for almost a week.  It’s the first day (Sunday) that the sun has been out in a long while, but few days ago, I ventured out to Walmart during what turned out to be a flood-causing downpour.  As I rushed in the store, I noticed an older gentleman walking his cart full of groceries to his car, becoming soaked because he had no umbrella.  Since I did have an umbrella, I quickly ran to him and walked him to his car.  He didn’t say much, but he didn’t seem like the type to gush.  It’s okay.  I get those people; they make me comfortable.

After we’d put the last bag in his trunk, I took his cart into the store, where many more people were waiting for a break in the rain, standing with their carts and groceries and no umbrellas.  They all began telling me

That was so nice!

I’m so glad you did that!

I smiled.  It’s hard to walk by someone without an umbrella in the rain when you’ve got one, you know?

I should tell you now that my umbrella is very large and has the name of a neighboring town stamped prominently across it.

It’s at this point that an older woman looked at me and said, “You’ve just restored my faith in the people of *that town*.”

Now, I don’t live in *that town*, but what if I had?  I perpetually think of really great comebacks a few days after incidents like these, when my brain crushes to a halt because I can’t believe what someone just said.  I laughed at how silly this woman’s comment was – a woman from a prominently white town of a few thousand people making a snide remark about another prominently white town of a few thousand less people – to someone she assumed lived in that town.  I thought about what I could have, maybe wished I would have, said in response to her simply ridiculous comment.  But then I thought about what might have driven her to say such a thing, wrapped up in the trappings of a “compliment” to a perfect stranger, and I became a little sad.

I want to talk to you about worth.

I am no better (or worse) than someone because of my last name.  I am no better (or worse) than someone because of my education.  My home town.  My family.  My profession.  My ethnicity.  My past.  My socioeconomic status.  My faith.  My fertility.  My marriage.  My disorder/disability.  My nationality.  My opinions.  My political affiliation.

Am I suggesting that we’re all of the same moral character?  That we should all have the same gilded reputation?  That we are all fine as-is?  Am I suggesting that it simply doesn’t matter what we do? (1) Of course not.  That would be absurd.

When I say “better,” I’m not talking about morals and reputation.  I’m talking about worth.  Morals are encouraged, reinforced, and cultivated; a reputation is earned.  Worth is something I was born with.

Because if you strip away all my accomplishments and mistakes, the very thing that makes me worthy is the same reason that every human who has and will ever live is worthy.  I believe we are worthy because we are made in the image of a Divine Creator, and what He makes is good.

When I find myself slightly damp, out of breath, and on the receiving end of a backhanded compliment from a complete stranger in the lobby of Walmart, I see someone who has become caught up in the trappings of comparison.  I see someone who has forgotten why she is worthy, and why I am worthy.  When I hear good, worthy people verbally combing the character of others for impurities, I hear insecurity and misplaced importance.  Because if I remember what makes me worthy, I’m not going to sit around patting myself on the back for the morals I live by and searching for the flaws in others.  It’s the same foundation that is going to keep me afloat when I make mistakes of devastating magnitude.

And yeah, I’m saying “I” because I need a reminder.  When my worth is caught up in what I’ve done, for good or ill, I’m much more likely to be unhappy and on the hunt for fault in others.  I’ve felt it.  And if even Jesus walked this earth and said, “Why do you call me good?”(2) I’m thinking he’s focused on worth, too.  So I’m going to start seeing others (and myself) through that lens.

 

 

 

 

(1) I believe Paul addressed this as he spoke to the Romans.  Following his exploration of life-giving grace extended by the sacrifice of One who believed all were worthy, he challenges the readers to leave forever their places of bondage and sin in response to such a gift. (Romans 6:1)

(2) Luke 18:19, Mark 10:18

The Places of Pain

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Three weeks ago yesterday we had to unexpectedly put down our ten year old dog, Sophie. Since then, I’ve been thinking about the places of pain.

Sometimes, when the things that hurt us are tied to places or people, we’re able to quite physically move away.  We leave houses, towns, jobs, relationships – occasionally, we’re allowed to put both time and space between ourselves and the other parties that remind us of our ache.

But sometimes, we must stay.  It seems that sometimes we’re required to sit there in the darkness of pain.

It ended up that we needed to drive thirty minutes out of town to meet the veterinarian who could help us end Sophie’s suffering, so we did.  And so it happened that Sophie died in the back of my car while I held her and cried.

The next day, I drove that same car past the very place where it had happened.  I can’t get rid of my car.  I can’t stop using the road where it happened.  I began thinking about the times in my life when I or someone I love has been called to stay where the pain is.  I thought about times when we can’t (or choose not to, because everything is a choice) walk away or leave despite even the most excruciating pain.  I think of friends I have facing shocking medical diagnoses, battling depression or addiction, grieving the loss of children and loved ones, navigating marital problems or divorce, rebounding after job loss, and those still nursing old, old wounds.

After spending some of my own time over the past few years staring down my own darkness, I have these things to say.

First, I do not believe we were created for suffering or pain.  And yet, because sin entered the world and with it came brokenness and death, we will all experience suffering.

And, like certain varieties of flowers that only bloom under the cover of evening, I believe that God’s true plan of love, healing, mercy, and wholeness shines through in the hearts who show up to sit and wait with us while the darkness is all around.  This is the plan.  This is kingdom come on earth as it is in heaven – love that repairs and restores.

When Koby went to my car the next day, he found something under the blankets where Sophie’s head had been resting.  I like to imagine that it’s her small reminder to me of what’s still there even when times are darkest.

 

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On Balance

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God: I have this thing that you’re going to do.  I already started it.

Moses/Me: Lolz.  Wait, seriously? OK, um, I don’t really think I have the background and experience to do that.  Also, I don’t talk very well and…

God: Oh for crying out… look, who made mouths to speak?  I did.  I wouldn’t be asking you to do this if I wasn’t familiar with the concepts.

Moses/Me: Please no.

God: Look around you.  I’m already doing The Thing.  There are so many resources and people I’ve already given you to do This Thing.  I’ll be with you.  It’s already happening; just come on.

Geez, this post is going to be all over the place.  Let’s start… with naps.

If you had a parent who made you nap against your will, and now you are a parent forcing rest upon your children, you’ve probably thought and/or said something like this to your precious wee-ones, “I WISH I HAD SOMEONE SHOW UP AT THIS LOONY BIN EVERY DAY AND TELL ME IT’S TIME FOR MY NAP.”  With or without the “I’m about to snap,” emphasis.  I found myself thinking just that the other day.  I wish there was a bigger, wiser person around who told me to nap every day.

And then I thought, there really is.  Maybe not in those exact words.  But if you’re lucky enough to even have a few people in your life who are just a few stages ahead of yourself, I guarantee they’re telling you things like, “It’s okay to rest,” and “You don’t have to do it all,” and “Take care of yourself.”  In the past, I’ve resisted these suggestions with as much defiant energy as Knox will use to rebel against a nap.  It’s often on the days he needs it most.  It’s often at the times I need it most.  I don’t see the benefit of resting or saying “no” when there is so much to do.  Knox doesn’t see the benefit of napping when there are still so many things to break in the house.  And we end up as worse versions of ourselves.

I’m trying to listen better.  One of my New Year’s Resolutions is literally to stop interrupting others so much as they’re talking.  It’s a really bad habit I’ve developed.  But I think I also mentally interrupt.  And I think I also don’t hear what people are really saying sometimes.

One thing I’m “hearing” this week is a need for balance.  I’m a mom, so I spend a lot of time talking to other moms, and I hear them needing balance in their lives.  They want their families to be healthy, and happy.  They want to work hard and feel excited.  They want financial freedom.  We want to be really good moms.  And we want to be really good wives.  And we don’t want to totally lose ourselves in the process.  We are not sure how to “have it all,” so to speak.

I realized that this blog has become incredibly off-balance.  I listened to a small business speaker discuss her social media outlets the other day and the absolute necessity of diversifying her posts to reflect ALL of her true self.  (I think we can all agree that it gets pretty annoying when your feed turns into any of these three things: an infomercial about __________, humble-brag showdown, a cooking show.)  In the past few years, I’ve heard a lot things about this blog.  They’ve mostly been positive, but comments like these have especially made me realize how tunneled my posting has become:

“Your blog used to be funnier,” I hear sometimes.  And, often, “I cry every time I read your blog.”

Feeling responsible for your weeping (and weeping in general) makes me feel like this:

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And I, for one, am not-so-secretly grateful for the space and time that divide us in these moments, so I’m not forced to make a joke because your feelings are giving me feelings.

If there are four pillars in my life, I’d say they are Faith, Family, Art & Expression, and Health & Wellness.  If there are five, the fifth is Harry Potter.  (Executive decision: There are five.)

My blog is making you cry because I’ve been predominantly focusing on Health & Wellness, and more specifically, disability and un-wellness, for the past few years.  Even though I’m a positive person, and I try to learn and squeeze life-lessons out of everything from my Bible to the back of a Cheerios box, dwelling on this one aspect of my life just isn’t me.

And being genuine and truthful is… crucial to me.  If you’re reading this blog, I guess you think some of the things I say are interesting or important.  I don’t want to neglect the other areas of my life in my posts anymore – it doesn’t feel genuine!  And that makes me feel uncomfortable.

I’m still exactly as funny as you remember me in person.  (So… take from that what you will.)  Life over the past three years has given me new perspectives that I’m insanely thankful for; and life over the past six months has instilled within me a sense of purpose and goal-setting that never existed to this degree before.

There’s an aspect of my life that I’ve kept off my newsfeed and away from this blog for x and y reasons.  Maybe I’ve tricked myself into thinking that people only want to hear updates on Hayes or the latest ridiculous observation from Knox.  But I’ve not been hearing my friends and family and people I meet – people want to be WELL (emotionally, physically, spiritually).  I’ve been working on big-picture Wellness for awhile now.  I’ve been able to share my reflections with a single group in my life, but I realized this week that I can share them with everyone.  (Duh.)  So I’m going to do that here, from time to time.

The insight you’re about to read was posted in a Facebook group I belong to called Into Bliss.  It’s a group of people headed by my mother-in-law, sister-in-law, and myself, where we encourage each other to pursue big-picture wellness and financial goals.  Members run the gamut between individuals who brew their own kombucha and birth at home to those of us just trying to put less chicken nuggets in the mouths of our children and wash our yoga pants once in awhile.  I love it, because that’s life.  I want all these perspectives in my life.  So here is what I posted on January 19.  (I call them “Super Truthful” posts because I want to remind people -like me- who feel a little out-of-place in a “Wellness and Financial Goals Group” that we are on a JOURNEY, and there isn’t ANYONE who has got it all together.)


 

Super Truthful Post #3.

My impending birthday has me ALL KINDS of introspective, so bear with me. Let’s talk about honoring our bodies. As someone who doesn’t do drugs (except coffee I guess), doesn’t drink too much, and is in relative good health, I always thought I had honored my body. What I love about essential oils and being a part of Into Bliss is that I am beginning to finally, truly, listen to my body and therefore honor it. Except for the 18 months that I was pregnant, I don’t think I’d really ever done that at all. Let me explain.

I’m the person who will walk around with a 102 degree fever thinking, “I must need a nap.” I have been THAT out-of-tune with my body. In the past, I have taken a sick pleasure in looking at my calendar and seeing EVERY.DAY.FILLED with something to do. Because busy = needed, successful, and important, right? I have neglected nutrition and necessary rest frequently, and the times I’ve noticed symptoms of sickness before illness, I’ve told my body, “I don’t have time for this,” and kept going. (I’m sure none of you can relate to that.) Sometimes, I’d eventually go to the doctor, but the expectation was the same: “Give me something to get this over with quick. I don’t have time to be sick.” This is abuse! If I’m not taking care of myself with rest, hydration, and nutrition, and THEN ignoring signs of illness (usually because I am busy), and THEN just going to the doctor (or the CVS self-medication aisles) to take a medicine I shouldn’t have needed in the first place, I am NOT taking care of myself!

I’m thankful for modern medicine because it can sometimes mean almost guaranteed healing for things that were once deadly (lookin’ at you, malaria) or a sense of security for the ones we love (so glad I have an epi-pen for Knox!) BUT I don’t like how reliance on medications to “fix me” have tricked me into thinking I should just “Go, go, go” until I have to stop. I walked into Walmart the other day to a depressing sight – the whole front of the store was packed with all the necessary items for flu season. We expect to get sick! And I think it’s because we don’t know how to really take care of our bodies. We do exactly what we want to do, when we want to do it, for as long as we want to do it and then expect medicine to fix the damage… over and over again.

I love essential oils because they were designed (not in a lab, but by an Almighty God) to be something we use with intention – to use them in accordance with their design requires us to slow down, to listen, and to honor ourselves. I’m picking up the hint that these are all habits worth developing.


 

 Whether I like it or not, God is increasing my territory.  One of the things I’ve been keeping my mouth shut about is (God-willing) going to replace my teaching salary within the next six months.

I’m opening my mouth, because things are already happening.

(Questions?  E-mail me at andrews.kca@gmail.com.)

 

From Both Sides Now

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Joni Mitchell’s Both Sides Now – I’ve had it in my head since Thanksgiving.

Rationale:

  • Thanksgiving begins the American holiday season.  (Duh.)
  • Love Actually is a Christmas movie.
  • Both Sides Now is in Love Actually.
  • Both Sides Now is now a Christmas song by proxy.
  • You can totally start playing Christmas music and movies after Thanksgiving.
  • Both Sides Now has been in my head since November.

I like this song.  It’s a little sadder and feels a shade more defeated than my typical world view, but I’m attracted to the premise, and I think the writing’s great.  Let’s talk about both sides, now.

Lately I’ve been thankful to God for the unique ways in which he’s allowed me to see and experience life from both sides of particular situations – it compounds my compassion, my empathy.  Any of us fortunate enough to grow up will see any number of things differently over time.  Life looks different as an adult than it did as a child, as a teenager – but I’m talking about really specific scenarios.  Those “I never thought I would be here, doing this” moments – I feel like I’ve had a few of those, and they often run in direct opposition to the place I thought I’d be.  Sometimes I find myself literally sitting on the other side of the table.

The scope of my views from the other side (oh hey, Adele.  Don’t worry, this post is positively packed with references to powerful words from female contributors, but this is the only cheesy nod.  I swear) ranges from simply humorous, to a strengthened ability to show grace to others because I’ve been in their shoes, to deeper, life-altering perceptions of the way I think about life, my faith, and my purpose.  I’m grateful for my time on both sides.  Because both can be so important.

Here are a few my-story-specific situations I’ve been thinking about.

When the pain that came with knowledge that Hayes would live with us forever was fresh and raw, and I would see mothers lamenting over their sons and daughters leaving for college, or indeed growing up and away in other ways, it was hard.  I didn’t see death; I didn’t recognize a veritable tragedy to lament here.  I admit, I struggled.

But a few nights ago, I found an old picture of Knox and missed him terribly – both the boy sleeping in the next room and every moment that had already passed with him.  The picture was just a few months old, but in that short time he’d grown up so much.  I reflected for the millionth time on the very short amount of time he will be little.  I can only gather him in my arms for so long, carry him to our bed when he has bad dreams for so long; and soon those days will be gone.  It’s not a tragedy, but it’s an ache.

I’ve attended countless meetings as a teacher to assess, review, and dismiss components of individualized education plans for my students with special needs.  I remember the determination in the eyes of the parents I’d meet.  When I attend these same meetings, now occupying the chair I once pitied, the same teacher’s heart beats inside my chest, and with my paperwork I carry in the memories of caring for someone else’s child as if they were mine.  I’m aware that interaction with their child’s teachers and school administrations isn’t always positive for parents, but I know from the other side there are still lots of teachers who aren’t just there to have summers off, who do believe in their students, and who try their best to help each one achieve.  (Too often, I see many of them exhaust themselves for their students and still be told they’re not doing enough, but that’s another post for another time.)  Now I look for the determination in the eyes of my son’s teachers.

I’ve been the frustrated, underpaid daycare worker and preschool teacher waiting on a mother (who may or may not have known my name) after I’ve held and cared for her child all day.  I’ve been the frazzled parent running late and forgetting, for the third time that week, more diapers when I pick my kids up in the afternoon.

I’ve been the working mother; I’ve been the stay-at-home mother.  I’ve wanted to help someone but been to scared to offer, and I’ve desperately needed help and benefited from those brave enough to reach out.  I’ve said “I’ll never” and then plopped my dirty-faced kid into the shopping cart at 9 PM at Walmart on a Tuesday night.

I don’t know how to grow without self-examination, and sometimes the process is really uncomfortable.  (I’ll probably read this post in a few years with absolute mortification.) A few nights ago I recorded a podcast with the guys over at Globe and Crown, and we touched on this a little bit.  Joey had a Both Sides, metamodern moment when a boy stopped him at work and he suddenly saw himself through the eyes of a youth he could have identified with/as.  When he says “I looked down at myself,” I can’t help but imagine this scene in a figurative sense, as he, the “Suit” stands before his own younger self, a kid bent on changing the world, squinting with skeptical eyes at the sell-out lawyer.  How does he measure up?

There’s a short story by Sandra Cisneros called “Eleven” that I read as a hormonal, sentimental preteen – and one particular comparison the narrator made has always stayed with me.  She’s recounting a memory from her eleventh birthday, but she doesn’t feel eleven yet.  She imagines the years she’s lived as pennies rattling around in a old tin.  In the moment, she’s eleven, but she’s also ten, nine, eight…  I can’t separate the years and experiences I’ve lived from the person I am today.  I can’t take the pennies out. In this moment I am twenty-nine, but the sixteen year old is in there somewhere.  So is the teacher, and the working mother, and the art student, and the girl who wanted to be Nancy Drew. I loved where the podcast went as we described tension in the moments when we compared the people we’d become to the ones we thought we’d be.

While it can be uncomfortable to confront and examine, I don’t begrudge the ignorance of my younger self – how can I?  The skeptical kid cannot imagine what would possess a good man to become a Suit, because he doesn’t really even know what it is to be a man at all. “Youth cannot know how age thinks and feels. But old men are guilty if they forget what it was to be young…”  (Thanks, J.K. Rowling via Albus Dumbledore in Harry Potter and the Order of the Phoenix.) I don’t resent the people who use the word “retarded” incorrectly as a casual insult, or the parents of typical children who simultaneously mourn and celebrate their children’s milestones, because I’m reminded a thousand times of the things of which I know nothing.  I have friends who have lost children, experienced divorce, and struggled with infertility inquire as to how I am doing. The fact that I cannot comprehend their journey does not matter – they extend grace to me.  I am still valuable to them, even if (when, probably) I may do things that are insensitive to their new realities.

I’ve come to realize it’s important to make room for both sides.  The mother of Hayes is different from the mother of Knox, and yet I am both at the same time.  I’m grateful for the first-hand understanding that independence is a priceless, beautiful gift not given to all and also for the knowledge that when granted, it comes with small, sharp wounds – because this makes me more compassionate.  I’m thankful for the wisdom that the absence of the gift is not necessarily a curse.  As we wait for eternal reconciliation and restoration while things seem to be crumbling into pieces all around us, maybe a little bit of that redemption plan happens even now when we use those things that barb and hurt us to help bring someone else a small moment of relief or understanding.  Even though it took me awhile to get here, I’m resting in the peace of knowing that finding yourself in the chair on the other side of the table (maybe wearing a suit) isn’t the end of the world.

Hayes’ New Seizure-Free Diet

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IMG_2554Beginning tomorrow (Monday, October 5), we’ll be in the hospital with Hayes for an undetermined amount of time in order to begin him on a new diet that is designed to control and eradicate seizures.

This summer Hayes went through periods of increased seizure activity (then we upped the medicine), intense lethargy (we thought it might be the upped medicine and dropped back down but in retrospect it may have been exhaustion from the increased seizures), and renewed energy (after a third medication was added).  I came to the doctor with a lot of questions, the biggest being, “What’s the goal here?”

I didn’t know what to hope for re: seizure control.  Obviously, I want Hayes to have ZEROSEIZURESEVER, but I don’t want to up-up-up his medicine every other month.  Honestly, I was really pleased with adding the third medicine and seeing a resumption of Hayes’ normal activity, energy, and attitude – even though he was still having a few seizures a day.  (Prior to the added third medication, Hayes was sad all the time, tired, and was beginning to lose some of the skills he’d worked so hard to gain.  He hardly had the energy to hold his head up.  With the addition of the third medication, he was like his old self!)

Our doctor said, “We want complete seizure control.  I want it to be very rare if he ever does have a seizure – like, once a month.”  And we agreed that we all want to do this in a way that maximizes Hayes’ ability to be alert and happy.

And so, the ketogenic diet was brought up.  Since we’ve tried 4 of the ‘top’ medications, and none have done the trick 100%, it seems we are unlikely to find a ‘miracle’ drug that will get us that total seizure control.  This, plus the certain type of seizures Hayes has (Infantile Spasms, which generally -if uncontrolled- develop into a syndrome called Lennox Gestaut) makes Hayes a good candidate for the diet.

We’re excited about the diet.  It isn’t generally the first thing that’s tried because at the get-go (and why we went with medicine at first), the ultimate goal is to get the seizures under control.  And fast.  And the diet obviously takes a bit longer.

Basically, (in a super simplified explanation that I’ll probably get a little bit wrong) the diet is understood to work by changing the way the brain works.  (Which is what medicine does too, and usually faster, but synthetically.)  It’s believed that brain seizure activity can be fueled by sugar (no, not just the bad kind).  Before the time of Christ when people still believed seizures were the result of evil spirits inhabiting the body, people who suffered from seizures were starved to rid them of their ailment.  And sometimes, it worked.  Now we know that was probably because the brain started using ketones for fuel, which your body produces when it is starving.  Now, through the ketogenic diet (which is basically like an extreme Atkins diet), we can essentially trick the body into thinking it’s starving, which in turn produces ketones that the brain uses instead of sugars.  This works to reduce seizures in about 1/3 of patients.

We’re going to the hospital to start the diet (standard procedure) because some kids have trouble transitioning their eating and drinking habits in such an extreme way and refuse to eat or drink at all.  While he’s there, he will also get another 24 hour EEG.  We are pretty optimistic that Hayes will be cooperative and do well, so we are hoping for the minimum stay of Monday – Wednesday.  We’re also hoping that his body responds well to a less extreme version of the diet so that we’ll have greater flexibility in making his meals at home and won’t have to worry about things like the carbohydrates in his toothpaste.

Please pray that this diet is a wonder for our Hayes, that he responds well and quickly to it, and that he won’t experience the side effects that can happen.  We have committed to the diet for at least three months, and we want so badly for him to be in the 1/3 of kids who go on to become seizure-free.  We would love to see him slowly taper off his medications in the future,  come off the diet, and live a medication-free, have-a-donut-when-you-want-it, seizure-free life.

Here are some handy-dandy links if you’d like to read up on the ketogenic diet.

https://en.wikipedia.org/wiki/Ketogenic_diet

http://www.charliefoundation.org/explore-ketogenic-diet/explore-1/introducing-the-diet

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet