Five Minute Friday: Beyond

I have been having trouble finding the time, and in particular the mental energy, to blog lately. I find that most evenings, when all the necessities are completed, I am more in the mood to curl up in front of the TV than to think hard and deep about my life. So I'm going to take an idea that I first saw on my friend Mama Bear's blog, that originated with the gypsy mama: Five Minute Friday.

So now I get to write about the assigned word for five minutes without stopping to edit or erase or to think about whether or not it's the right thing to write. If I can do that. So here it goes.

BEYOND


Beyond the Sunset. It's a beautiful old hymn I sang at my grandfather's funeral this past July. I know a lot of old hymns but I didn't know this one, and I'm glad I do now. "Beyond the sunset, oh blissful morning, when with our Savior, heaven is begun, earth's toiling ended, oh glorious dawning, beyond the sunset when day is done." 


I've been sick this week, and I've spent a lot of time thinking about how unhappy I am with my body. I will be happy when earth's toiling is ended and I get a new one. Certainly there are a lot of people in the world who suffer through worse sickness than I do, but I am frustrated with this weak body of mine none the less.


Beyond the horizon.  I wonder what's out there. I wonder what is ahead of me in life that I can't see coming, that I have no idea is waiting for me.  That I am unprepared for.  Things I will love, things I will hate. Blessings, both of them. 


And that's five minutes.


Goodnight.

Chocolate Covered Brownies and Purposeful Living

The fact that I found clip art for this means I wasn't the first person to make this mistake.

I do not know what possessed me to volunteer to co-lead IC's brownie troop.  Normally this is exactly the kind of thing that I avoid like the plague.  There is so much about it that seems to scream at me that I should not do it.  First of all, my volunteer application has not yet been approved, and since my background is less than perfect, I'm not sure that it will be.  I had to divulge my deepest secrets to another mom who seems to have it all together, who I'd only just met, and then to a professional employee of the local Girl Scout council, and finally on an online form for complete strangers to read.  I shook while I typed every one of those emails.  Tonight I had to lead a meeting that involved corralling seven girls in an echoing kitchen, and baking. I don't consider myself skillful at leading, working with children, or baking, and a room that echos gets on my nerves when it's quiet, let alone filled with seven and eight year olds.  Next I had to lead the push to promote our fall fundraiser.  Thankfully the head leader was able to talk to the moms about it while I did the baking with the girls, but I am also not good at promoting things or selling things, particularly things that I know people are only really purchasing because they like your cute kid and want to support his or her extracurricular endeavors.  Honestly, I've always wondered why more groups don't consider forgoing organized fundraisers altogether and just sending kids out to beg for money.  It's the same thing, and involves a lot less paperwork.

So thus far I have spilled my guts to complete strangers who I perceive as being better than me and who have the opportunity to judge my statements, I took on a leadership position when I am most definitely not a leader, I volunteered to work with children on a regular basis even though I usually find that raising my own is quite enough for me, I baked even though I have yet to get through a recipe without asking E's opinion on something or other, I worked in a loud room, and I asked people I don't know to spend their time selling stuff that no one wants and acted like it was a great idea.  We just finished our second meeting.  Lord, what have I done?

So we baked brownies.  I will now pause so you can either giggle or roll your eyes at this clever idea.....
It didn't go how I wanted it to go for a number of reasons. I totally underestimated how long it would take these girls to work on a recipe together, in part because our first meeting was attended by four mostly quiet little girls, and this meeting brought seven, a few of whom seemed to bring out the hyper in each other.  To make a long story short, my evening was filled with a lot of echoed screaming and giggling, and in the end each girl went home messy, carrying a hunk of chocolate sludge wrapped in foil, and an hour past her bedtime.  By the end the other moms were begging for it be over, IC was crying in the corner because she hadn't even eaten dinner, and the head leader's cousin/babysitter was pretty ticked off.

In the past five years I have endeavored to live a rhythmic, unhurried life, and to keep my family moving at a pace that gave them space to be truly thoughtful about their choices and day to day activities.  When I write it that way it sounds boring and a little silly, but I made the decision to work this way purposefully.  Keeping open space in our schedule allows us to have more times when we find ourselves at home, together, with no obligations hanging over our heads to pull us apart.  I think that my children are enriched by deliberately having some time when they aren't doing homework, or chores, or extracurricular activities.  Creating blocks of open time allows me to remain purposeful during the busy blocks of time because I can slowly and thoughtfully examine how I spend my time and know that the time investments that I make are fulfilling my ultimate purpose: to love God, and grow closer to Him.  In Matthew 19:26 Jesus said, "Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal.  But store up for yourselves treasures in heaven, where moth and rust do not destroy, and thieves do not break in and steal.  For where your treasure is, there your heart will be also."  Many people interpret this verse to refer specifically to the pursuit of wealth and retail therapy on all of its various levels, and rightfully so.  But I think that most people, when they think about it, would also admit that they treasure their time at least as much as they do their money.  I've always felt that time is of the essence in my life, and for some reason I've always felt hurried, not just in the day to day moments, but also on a larger scale.  Weeks after I started college, I couldn't wait to graduate, weeks after getting married, I couldn't wait to have children, and as soon as I did that I was ready for them to grow up.  A major cause of this is my concerns about my health and genetics, but it's also caused by my acceptance of the common societal ideal that our value is based on how much we can produce.  Yet I know for a fact that that is not how God defines my value, or the value of my children.  I desperately want to teach them that our life's focus should be on our relationship with Jesus Christ, not on how much they can get done, and when I talk to them about how Jesus loves them and how God wants to have a relationship with them, I'm right on target.  But when I get frustrated with them and myself because we simply don't have time to accomplish everything that our schedule is asking of us, I am failing at this.

So I guess the question now is, am I failing to follow this concept of deliberately living at a slow pace and creating space in my life by keeping margins of unscheduled moments in my schedule?  I've struggled with that in these last few weeks, as we run from the bus stop to soccer practice to cub scouts, and then home for dinner and straight to bed.  I struggle with it even on the nights where (praise the Lord) we don't have any extracurricular activities, because even then I have my time filled with preparing fundraiser materials and answering emails and uploading photos and making sure we have parent-teacher conferences scheduled.  My Tuesday morning ladies' Bible study is about to begin reading Breathe by Keri Wyatt Kent, a book that I suggested, and the book that first introduced me to this idea of living slowly and deliberately.  I am very conscious of the fact that as I am about to tell my friends that this is the path I've chosen, my life does not really reflect that.  Yet while I know that the rhythm of my life is running at a frantic tempo right now, and I know that it may be necessary to make some changes to this simply so that I can endure it, I am not outside what God would want for me.  After the brownie meeting tonight I felt frustrated but a friend reminded me that sometimes the moments that seem the most disastrous are in fact the most memorable.  I am co-leading IC's brownie troop because my mom served as my Girl Scout leader for four years, and continued working with other Girl Scout programs for years after that.  While my relationship with my mother has always been complicated, I knew even then that she was doing it for me, and I valued that, even during those early adolescent moments when I wished that she would butt out.  This is an investment in my relationship with IC, and this in particular is something that will create memories for her and I alone.  In this she can know not only that I did this for our family, but that I did this for her.  


Keri talks in her book about living in a rhythm of activity and rest, and that is what I am doing. "To everything there is a season, and a time to every purpose under heaven" (Ecclesiastes 3:1).  Right now life is crazy, but I know that it isn't going to last forever.  Soccer season will end in November right in time for IC's birthday, and then Thanksgiving, and then of course Christmas, but a moment will come, probably sometime in the first week of January, when I am going to stop, take a deep breath, and know that nothing right then is more important than resting, being still, and thinking about the goodness and mercy of Christ.  Remind me.

Blogging By Moonlight

This must be what writing a boring blog after the kids go to bed looked like in 1901.

On Thursday it will be one month since IC and DJ's first day of school.  E started his classes for this semester a week after them.  Surveying everything that has changed since then, I think that I am finally starting to see all of this come together into that magical comforting place I call a routine.  I am a very regimented person, but unfortunately that is not the type of life I live, as much as I try to make it work that way.  I am a homemaker, which is a term I prefer over "stay at home mom" because it sounds more active and intentional.  My job as such is to serve as the manager for the day to day needs of four other people, each with a great difference in what those needs actually are.  The problem is that my desire for routine leads me to try to set things up for myself so that I can take care of each one's needs proactively, but three of these four who I care for change on a daily basis, and change their lives completely every few months. I've mentioned in the past that I have really struggled with finding any sort of comfort zone with my husband's schedule ever since he started nursing school a year ago.  The difficult part about E's life and IC's life and DJ's life is that they are always changing.  It takes me the full sixteen weeks of E's semester to get comfortable with when he's here and when he isn't, and to know how I should react to both.  Then, of course, the semester ends, and it changes again.  IC's and DJ's changes revolve around the changing seasons of after-school activities.  Currently I am trying to figure out how to balance our weekday evenings: Mondays- no activities, but double homework to prepare for Tuesday; Tuesdays- get dinner on the table before kids arrive home, pick up kids, feed them dinner, straight to soccer, then bring IC and HT home while E takes DJ to cub scouts; Wednesdays- 1st and 3rd of the month- allow E to care for kids while I attend church, 2nd and 4th of the month- take IC to brownies, every week it's double homework to prepare for Thursday, etc. It makes my head spin.  I'm realizing though that there are a few things that I can rely on that will probably be present everyday.  Everyday, E will get up as soon as the first child wakes up, even if I offer to let him sleep in like a bajillion times.  Every night E will claim he has to stay up and study when instead he will fall asleep on the couch and accomplish nothing.   

In all of this I always put my own desires about how to spend my time last.  I am not whining; I do this by choice.  It is simply easier for me to know that I am caring for my family if I know that I at least can be the flexible one, even though I am the last person you would describe as being flexible.  None of my plans are ever set in stone.  I am not a martyr, because I do my best to keep careful track of my most pressing needs and when necessary I will take care of them.  I don't skip meals, I catch a nap or sleep in when I'm feeling sleep deprived, and I chat on facebook or attend a church event when I need some social time.  But if those particular boxes are filled or close to filled, I move on and continue to manage everyone else.  

Generally I'm perfectly content this way, but never for very long, because sooner or later something will start to itch.  Sometimes music calls me, and I feel as if I will never be satisfied with my life again until I can start taking voice lessons again or sing with a professional choir.  Other times it's travel, something I have never done.  Lately I've been getting the itch to move again; thinking that if I don't get out of this city and experience a new place, like, tomorrow, I will never be able to go on.  Today the writing bug bit me, and it's itching.

My women's Bible study group labored over the choice of a new book to read this morning, and happily they chose a book that I suggested, Breathe by Keri Wyatt Kent, who is one of my favorite authors.  I was excited about it, although of course there was the necessary side dish of guilt ("Did I push it too much? What if everyone hates it and it's a waste of their time?").  Anyway, I hadn't checked out Keri's facebook page or website recently so I took a quick glance and ran into something kind of new and that's when the bug got me.  Keri and twelve other female writers have founded the Redbud Writers' Guild, a group dedicated to "fearlessly expanding the feminine voice in our churches, communities, and culture".  My heart was clicking my internal "like" button a million times when I saw it.  I read through a few pages of blog posts from the members, all so different, yet all so thought-provoking and reflective.  Oh the joy that would be mine to belong to such a circle, to have my words read and respected with the likes of these.  And then I noticed that one can actually apply to join this sacred circle.  My heart was dancing. A writer! Me! I want to join! Ooo, Ooo, pick me, pick me!

Stop, deep breath.  You are a lowly blog writer who has a whopping eight followers, only one of whom it not a personal friend (and thank you to that one, you give me hope!). You write your blog at around midnight on the nights you even get that far, and you fight to stay awake while you do it.  You will never be eligible for this.  I looked at the membership application, and it is pretty certain that I do not have the prerequisite experience for this group.  There was a large space where one was to list all the books and articles she has published in the past.  Although the button at the top of this page does say "publish", I doubt that a free blog is what they have in mind.  I have never published so much as a classified ad.  

No matter, I will have to start small and dream big.  That's the advice I'd give one of my children.  Figure out how I get there from here.  Take the first step, write the blog, and explore ways of getting it out there.  But where?  I'm not even ready for that question yet.  The bigger question for me is when.  Maybe I want to write because I am imagining these ladies sipping tea on their porches and typing on their laptops while they listen to the birds and smell the flowers.  I don't even drink tea.  I don't even have a laptop, now that E has commandeered the one we own for his schoolwork.  I write on an iMac that is situated between the kitchen table and the Jumperoo.  Yeah, I am so not a writer.  Just like I was never a singer, or a missionary.  So many intentions, so much time spent gearing myself up to take the first step, but questioning in which direction I should go.  

But I'm not ready to stop believing that any of these things could happen to me.  Heck, all of them.  I did sort of manage to bundle them all together in the ethnomusicology program I was doing.  But how do I break this down so that I can know what God is trying to tell me with all these desires to do things that right now seem so vague and beyond my reach?  What is it that I really want to do?  

I want to speak (or write) words that someone will hear or read, and it will change their life.  I want to look someone in the eye and offer them the love of God, like a gift wrapped up and given just for them.  I want to do things, say things, and write things that will shift someone's perspective so that they will think deeper, see God's love for them clearer, and love themselves more in the process.  I want to offer someone mercy and encouragement, even if I will never completely understand their situation or their struggle.  I just want to love someone.

And just like that, just as I type it out, I realize that I do that everyday.  Maybe it's not on the scale that I dream of, and it's not in the format that I would like to speak from, and maybe I don't succeed all the time.  Maybe I need more practice.  But I do all those things.  I do them when I explain to IC that the reason she must try the Trader Joes potstickers I made for dinner is not only because she will be rewarded with a restaurant trip on Friday, but also because eating a variety of healthy foods is essential to her body feeling healthy so that she can do all the things she wants to do.  I do them when I button up DJ's cub scout uniform while he's changing his clothes in the car, and I tell him that I can't wait to see all the exciting things he will learn and do this year.  I do them when I hold HT after he suffers yet another bump on the head from his overly eager efforts at learning to walk.  I do them when I remind E that he will make mistakes as a nurse, and that yes, his mistakes could kill someone, but that even then he needs to be able to go on and still know that he is good at what he does and that he does it out of a God-given desire to care for others.  There's four people right there, over and over again, in one day.  I'm not saying that this satisfies all these itches that I keep getting, but it does tell me that one day I will accomplish grander things, because right now I have these four people to practice on.  And most of the time, these four people seem pretty happy, and feel pretty loved, so maybe I'm doing a good job.

What I Want To Do When I Grow Up by Melanie

{Insert overused movie cliche here.}

So, have I had writer's block for four months? If by "writer's block" you mean two kids plus a baby, a husband that's always hanging around, an insane summer and not a lot to say that's intelligent, then yes.  My mind has been consumed by the needs of the moment for months, and the thought of tackling any sort of higher level thinking has brought me nothing but exhaustion.  Even now I'm struggling with what to say here, but the writing bug is back.  There's a portion of myself that enjoys being completely invested in my children, not just in the sense of caring and loving but in time spent.  That portion of me still gets excited when late August back-to-school time is getting close, and looks forward to buying new composition books and pencils. Somewhere in all that excitement I realize that in a way I'm jealous of my children, barely scratching the surface on living their lives and heading off everyday to spend their time learning new things, surrounded by their friends.  I have the personality of an eternal student; I am never satisfied unless I'm studying something. The trouble is the practicalities -- being a student doesn't exactly pay much.

I have been been married for nine years, and I have been a homemaker the entire time.  I didn't really plan it this way, but the whole concept of choosing a career has always scared me.  I mentioned once in a previous post that just from casual observation it seems like my generation has a fear of relationship commitments, yet I have continually sought out deep commitments in every relationship I have, to the point that I think I intimidate people, because friendship with me seems too complicated.  Yet, as invested as I am in every interpersonal relationship I make, I have never been able to settle down and choose exactly what it is I want to do with my life.  Reading that would come as a surprise to anyone who knew me when I was eighteen; at that point in my life I acted as if I knew everything that was set before me, and my life would simply be a matter of connecting the dots.  But, while I was able to fool even myself much of the time, it was only an act.  I majored in music, and while it's true that I am unfulfilled without music in my life, I really only chose it because I had confidence that I was good at it, something I couldn't say for any other subject I enjoyed.  E had a similar experience when he chose to go to music school.  While he was probably quite sure that he would be successful at many different subjects, he had talent in music, and as we have both observed, when a person has what others perceive as "natural" talent in an art form, the people around that person tend to believe that that individual should pursue that natural talent to the point of excluding any other abilities or inclinations that are seen as more common.  More on that another time.

My initial college major was music education, but truthfully I never intended to be a music teacher.  Like Mr. Holland in Mr. Holland's Opus, I thought of teaching as something to "fall back on" if performing didn't work out.  My plan was to begin school as an education major, and then re-audition as a performance major after benefitting from a semester or two of college-level vocal instruction.  For those of you unfamiliar with music school vernacular, a degree in "performance"= the expectation that one will become a professional musician.  Everything changed in my first semester though. I realized really quickly that I was mediocre at best compared to the other sopranos at the exclusive conservatory-like school that I'd chosen mainly because it was just for singers.  E came along in the middle of that realization, and my sudden dive in self-esteem probably played a big part in making me just crazy enough to agree to marry a man eight years my senior who I'd only met a few months prior.  Falling in love changed everything, as it tends to do.  From that point forward my only real goal was to finish college so E and I could get married and raise a family.  I did graduate, in fact I took accelerated and summer courses so I could get done faster, and only completed a degree in "music".  Again, for those of you unfamiliar with the vernacular, "B.A. in Music"= "not good enough to perform, uninterested in teaching, not serious enough to do any more work".  So I finished school a year early, and was married and trying to conceive a baby before my degree came in the mail.

After almost eight years of parenting now, I know that this is not really what I want to do with my life either.  I know it just as well as I knew that I didn't really want to be a teacher, but that I'd be one if there wasn't anything else out there for me.  Parenting has become what I "fall back on".  And truth be told, I am no better a parent than I would have been a teacher.  I don't really enjoy it all that much either.

Let's be clear here.  It is perfectly acceptable to not enjoy parenting.  When I say that I do not particularly enjoy parenting, I am referring to the job of parenting.  The things that a parent must do on a daily basis, the stuff of life with kids, the practicalities that it seems like I'm always complaining about on this blog.   I am also only saying that I don't always enjoy parenting, not that I never enjoy parenting.  I love my children and value them far above my own life, which is why I do the job anyway.  They need me to do the job in order to fulfill the objective of childhood, which is to grow up.  What I'm trying to do here is define a separation between a parent's feelings about his or her children, and his or her feelings about the stuff they have to do in order to raise them.  For example, I love HT, I love watching him grow, I love watching him figure out how to walk, I love cuddling him, I love reading him books, I love his little face and his chubby belly, and I love imagining how simple his brain functioning is right now, and how complex it will be when he's 5, 15, or 21.  I do not love being bitten on the thighs because he is teething and wants my attention, I do not love changing dirty diapers, I do not love having to scold him for trying to eat cat food fifteen times a day.  But all of that stuff is just as much a part of parenting as cuddling and reading, and I find that there are really just as many parts of this job that I don't like as there are parts that I do.  Is it all worth it to give children that I love the care that they need? Of course.  But it's perfectly OK to not enjoy the job of parenting.  There are so many moms (and probably dads too) who seem scared to complain about the un-fun aspects of parenting, as if the fact that they don't like having spit up running down their arm means that they don't love their child enough.  Hogwash.  While there are some who are able to overlook the bad parts more than others, and many who won't admit to there being any bad parts, no one likes having spit up running down their arm.  Look at it this way, would you clean all those dirty diapers or get all those stained shirts or do all that scolding and demanding and disciplining for a kid you didn't love at all?  If your answer is no, then you're like me, whether or not you admit it.

I have spent most of my children's childhoods dreaming about what I will do as their needs decrease and they become less demanding of my time, energy, and mental capacity.  I've come up with a few ideas, but haven't followed through on any of them.  A year ago I came pretty close to committing to getting a masters degree in ethnomusicology, and even took four semesters of classes and began a thesis, but I never managed to shake the nagging feeling that I was just taking the courses to keep myself busy, and that in the end I would just be back to the same old choice -- teach the subject, or find something else.  There aren't any ethnomusicology factories where I could work.  I could pick a different subject, since there are a thousand that I would love to study, but they all lead back to the same place.  I think the part that I hate about this the most is that my parents told me this would happen.  When I came to them and told them that I was not going to get the education degree, and that I would be getting a B.A. instead, their immediate question was, "What are you going to do with it?"  I told them some lame story about how I could do anything with it because I had a balanced liberal arts education. It's what my advisor told me to tell them, and it's probably a script that liberal arts schools have written down for all advisors to memorize for when parents call concerned about what little Johnny is going to do with a bachelors degree in medieval glassblowing.  The truth was that I was going to do nothing with it except graduate early.  So here I am, investing a lot of time and energy into helping my kids find out what their interests and affinities are in different areas, all the while feeling like a hypocrite since I know that for most people, the interests and affinities they discover as a second grader have little to do with what pays the bills when they're in their thirties.

In the end, the fact that I even have the freedom to think about these things and to even consider making a decision that would lead to my actually acting on any of my interests or skills is a blessing.  I have all the freedom in the world to continue leading my charmed little life, sitting in my house in front of my computer for hours on end, loving on my babies and thinking about all the other interesting things I could do, and never do any of them.  Despite my parents' missteps, and despite my vague college degree, I have managed to come to this point having exactly what my parents did not have -- choices.  Whether or not my parents had a choice in their future employment is debatable, but I do not think they saw a choice.  My father is a farm owner because his father was a farm owner, and my mother is his wife because she fell in love with him when she was only 14, and she is a farm manager because my father is a farm owner.  It was really no different for E's parents. They worked a variety of jobs to put food on the table, and they did those jobs well enough to put two children through college, both of whom have now exercised the luxury of choosing a career to which they felt called.

Though admittedly much of my blogging is a transcript of my thought streams that I often hope will help make my decisions a little clearer, I now have no idea what I will do with my life, and I'm pretty sure that I will never see a day when I can tell anyone exactly how I'm going to occupy myself for the rest of it.  Maybe tomorrow I'll sign up for spring courses and start that ethnomusicology degree again, or maybe I'll never take another class.  Maybe next year I'll decide to put Henry in day care and start working at the Department of Transportation again, or maybe next year I'll still be sitting here blogging and playing facebook games in front of the computer until 2AM.  I do know that my children need me, even when I don't like what I have to do for them, and that that would be enough to keep me busy, if unfulfilled.  I also know that the lack of fulfillment is just a feeling, like any other feeling, and that in truth I have just as many moments of fulfillment as I do unfulfillment.  So maybe the real goal is to take hold of the fulfilling moments, and make those the ones I write about.

Living Blind*

I began this blog with the intention of committing to a specific range of topics and sticking to them, but instead I've found myself branching out and making it a bit more personal then was my intention.  I still want to commit to not making this a journal of my daily life, or even my daily thought life, but nevertheless my thought life, and the events and situations in my life that stimulate it, are what I have to bring to you.  I hope to also include some opinions and theories based on research into the psychological and sociological topics that interest me, but as I've come along with this over the past month I've also felt led to share the lessons I've learned and the moments that touch my life, in the hopes that I can offer new insight or even hope to someone who may read this.  (If I do, please comment! I think there is also a link to contact me privately by email, or alternatively you could post it as a comment, but mention clearly that you do not want me to post your comment, and I will read it without posting it.)

I am not a fan of ignoring or bottling up my hurts.  I believe that the first step of learning to cope with or manage the negative feelings and painful circumstances of life is acknowledging one's emotional responses to them, and that keeping them contained in some back corner of one's brain prevents a person from dealing with the pain, which can only result in more pain in the future.  Usually I can be accused of just the opposite of this, in fact -- I am often guilty of stating my feelings in the moment, without stopping to think about how others may react.  In the past few years, however, I have experienced a few hurts that have shown me that bottling the feelings, or keeping them boxed up on a shelf as I like to think of it, has its place.  For the first time in my life I am encountering something so painful that trying to deal with the hurt as I experience it is simply too much for me.  If I were to allow myself to truly experience and express my emotions on this as I felt them, I would be an invalid, because these feelings would overcome my ability to live a normal life.  For that reason, I store them away and don't talk about them much, and then only with those with whom I feel safe.  I can have it no other way, simply because I have a family and responsibilities and I need to keep on living each day.

My father was diagnosed with Early Onset Alzheimers Disease at fifty.  My grandfather, his father, died in 1987 of the same disease, along with my great aunt a few years later.  It is suspected that their father also died of the disease, and possibly a number of other relatives before him, though the Alzheimers diagnosis was not available at that time.  About a year ago my father received the results of some genetic testing and what we'd always suspected was confirmed -- our family carries a gene mutation that causes the disease.  With this confirmed it leaves me with at least a fifty percent chance of contracting the disease, probably around age fifty, and dying about ten years later, at sixty.  And there it is -- my greatest pain, my greatest fear.  It is a fear that consumes me, despite my best efforts to keep it in a closed up box at the back of the closet that is my brain.  It is a fear that prevents me from being able to fully cope with the reality of losing my father to the disease, probably within the next five years.  In fact, my father's disease leaves me so terrified that I find myself afraid of my father himself.  This disease being what it is, it seems to be gradually consuming his personhood, and while I value him no differently, to see him and speak to him is to see a shell of the man I once admired.  He seems lost in a fog, lonely, at times reaching desperately for the parts of reality he can still grasp, at other times just quietly slipping away.  

When I think about the very real possibility that I will one day be the one slipping away, it grips me.  I am not afraid to die.  I am somewhat afraid of the pain, or more likely the mental anguish of slowly becoming lost in my own mind.  But the fear that threatens to undo me is that of what I will do, and what I have done, to my husband and children.  I may carry a gene mutation that will cause my brain to slowly turn to ameloid mush, and unlike the more typical form of Alzheimers disease that comes after age sixty-five, this may begin as early as my late forties, and kill me by sixty.  And so my thoughts go:

When I am fifty, my children will be twenty-seven, twenty-six, and twenty.  My husband, who will be tasked with carrying for me, will be fifty-eight.  I have one child with a disability, who may or may not continue to live with us at this point.  I may never know a son or daughters-in-law.  I may never know grandchildren.  I may never see my children become the age that I am now.  They will have their own lives, and I will interfere with them, needing care around the clock, but unable to thank them for it because at some point I will forget their names.  And then the worst thought of all -- if it happens to me, chances are strong that it will happen to at least one of them too.  

On Christmas Day, the first year after my father's diagnosis, E, IC, and DJ and I were driving up to visit my parents for the holiday week.  We stopped at a truck stop, where friendly employees and truckers headed home themselves stopped to admire my sweet babies.  One trucker sat down at the next table to talk to me while I nursed, and mentioned that he'd always wanted to have kids.  The reason he didn't?  He had ADHD, and didn't want to pass on such a "terrible thing" to a child.  This was the moment when it first hit me about what I had potentially done to my children, simply by becoming their mother.  Already lost in one of the worst periods of depression in my life at the time, I hit rock bottom for awhile.  I had never seen myself as a good mother, but now my parenting didn't even seem to matter -- my children were doomed by their genes.  While the genetic mutation was not yet confirmed in my family, I had always assumed it to be there.  Three generations of dementia and early death can't be wrong.

The floodgates opened up again last night when I read a friend's blog in which she lamented the possibility that she may have passed on bipolar disorder to her son.  I cried for quite a while, I sat in a dark room and watched the rain, and I pitied myself and my family.  I asked God why.

Then this morning, sitting in church trying to keep my brain the in service and not on which child needed what and when, I followed my pastor's instruction to open my Bible to John 9, and God spoke to me, and I was reminded once again why we call it a "living Word".  In this passage, Jesus is walking along with the disciples when they see a blind man.  Apparently this wasn't unusual; the man had been sitting in the same area begging for probably most of his life (9:8).  They didn't have the Americans with Disabilities Act in ancient Israel.  The disciples ask Jesus the same question I asked God last night -- why.  Why would God allow this man to be born this way?  Informed by what they had been taught as good Hebrew boys, though, they made an assumption.  They asked, "Who sinned, this man or his parents, that he was born blind?" (9:2).  Having read this story a hundred times, their question seems immature to me now, but isn't that exactly what I was asking God last night?  Why, God?  What did my father, or my grandfather, or my great-grandfather do wrong that made you decide to curse my family with this awful sickness?  What can I do for You so that it doesn't happen to me?  Why am I facing this horrible way to end life?  Why is there even a possibility that my children will have to deal with this? WHY?  Though it was uncommon for Him to do so, Jesus gives them a direct answer:

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

My pastor went on to talk about how the disciples looked at this blind man.  They saw him, and perhaps anyone who was seen suffering, to be a sinner, doomed to suffer with illness because he had sinned.  Jesus directly challenged this assumption, and explained that God uses illness to show His greatness.  Our pastor wanted to change our perspectives with those of the disciples, to see weakness in others as a canvass for God's strength.  Today, for me though, I was sitting in the other seat.  I was the blind man.  I might even be the blind man's parents.  I realized that I was still holding onto an idea I'd had as a child -- that my family was cursed with this illness.  It's amazing how childish thoughts, left unchecked, can grow to become a part of our adult perspectives.  It'd been there so long that I'd accepted it as fact, never accepting this simple truth, that our weakness, including illness, exists to showcase God's strength.  

No, I have no idea why or how God will use Alzheimers disease to reveal his goodness through my father, or perhaps me.  I still can't really imagine something good coming from something that still hurts me so much.  But what I can see is how God has already used my father, and I have enough faith to know that He still can, even as he slips away.  I don't believe that God will miraculously heal my father, like Jesus did the blind man, and I don't believe that He will heal me if I do indeed develop this disease.  What I believe is that there is more to life than how or when we die, and that Christ conquered death, not just so we can go to heaven, but so that even crippling illness and death can be enveloped in His love.  I don't quite know what that will look like, but if I see it in anyone, it will be my dad.  

*Please note that this post was written on Sunday, 5/15/11 around 10PM, but Blogger was down, so it is being posted now.

The Beauty Cult

Do I look like them yet?

Almost every night for the past two weeks, just before I go to bed, I have lathered myself in Jergens Natural Glow tinted moisturizer.  It's basically a body lotion with a small amount of self-tanner in it, so that after a few nights of use you develop a very light tan.  It's not as dark as typical fake-baking, and I think more natural looking.  The trouble with this stuff is that in order to prevent all the color from coming right back off, you have to wait for "several minutes" after applying before you can put on clothes over it.  They make it sound like this is no big deal on the label, but I don't find that my life affords me a lot of time to sit around naked and not touching anything.  As a result I end up doing this around 2AM, when everyone is asleep so that no one in my family is subjected to staring at me naked for a long period of time.  Then I sit there naked with the ceiling fan on high so that I can dry faster and just get to bed for goodness sake.  And while I sit, I wonder why in the world I am going through this trouble to have slightly browner skin.  

The short answer to that, of course, is that my brother is getting married on June 17th, and I am very concerned about my appearance for the occasion.  One is supposed to look their best for a wedding, it seems, but I had a baby last August and I am significantly overweight.  The other two bridesmaids do not have children, and while they are not super skinny either, I am the biggest by quite a bit.  I'm the fat bridesmaid that you try not to notice when you look at the wedding pictures and remark about how beautiful everyone looked.  The dress my future sister-in-law chose is OK, but not very flattering on me.  That said, I'm not sure I would have thought any dress was very flattering right now.  It just isn't a good time for me to be in a wedding, but that isn't exactly my choice.

So I find myself lacquered in smelly brown lotion every night and buying $50 undergarments that would make Madonna proud.  Which brings me back to wondering why I am doing this.  More importantly, while I probably will discontinue the tanning lotion after the wedding, why will I continue so much of the rest of my beauty regimen?  For that matter, why must I lose fifty pounds?  Why must I stand on the scale every morning, begging it to register a lower number?  Why are so many of us spending our precious time carving and sculpting and tinting our bodies to fit some culturally defined standard?

I just reopened Eve's Revenge: Women and a Spirituality of the Body by Lilian Calles Barger, ironically while I was waiting for the tanning lotion to dry.  Barger argues that in all of us there is a desire to find and define an authentic self, and that this desire is placed inside us by our Creator to point us toward Him (Barger 28).  "The beauty cult" takes advantage of this universal desire, and through media and cultural expressions, teaches us that we can manipulate our bodies in order to bring us closer to self-actualization (Barger 15).  "In providing prescriptions for our disconnected selves, the beauty cult understands our spiritual need to be who we 'really' are and preys on that need" (Barger 15).  

We all get these cultural messages our entire lives, and though we're taught to approach and interpret them slightly differently, as women, we all must face them and choose our responses.  My life, as you may have guessed from my chosen content for my blog, can be interpreted as a series of my responses to the cultural messages I have received about my femaleness.  Despite all the opportunities and settings in which I have had to face the issue of the disconnect between my physical and spiritual self, I have never found an answer to this issue that works in the long term or across the many ways that the issue rears its ugly head.  As a young teenager I embraced cultural standards of beauty and sexuality.  I felt more confident the closer I came to meeting them, but of course I never met them completely, and so I maintained a constant level of discontent with my body, my appearance, and my sexuality.  Almost anyone can see easily that the cultural standard of beauty is unattainable.  Again from Berger, "Continual exposure to the media ideal skews reality for all of us.  Its effect on the average young woman is a body dissatisfaction rate higher than 60 percent in high school and 80 percent in college.  The obsession with weight starts early, with 42 percent of girls in first to third grades expressing a desire to be thinner" (19).  After my experience with sexual abuse in my early teens I also saw myself as damaged, and sought approval and greater confidence (or perhaps self-actualization) through my appearance.  Discovering that it was easier to gain the approval of young men than of my female friends who were struggling themselves, I displayed myself as a sexual object, and though I longed to be much more, it seemed to me that that was life, and that my need for confidence and individuality had to be somehow negotiated either through or around my physical body, which as Berger implies, was forever getting in the way.

As I got older I tried a few times to escape the body battle entirely.  There were two periods, early in my marriage and later during the postpartum period of my second child, where I adopted what I saw as my modesty uniform: long loose skirts, deliberately unfashionable; solid colored t-shirts, and sneakers appropriate for long hours on one's feet caring for small children.  I woke up each morning and put on this uniform, and it reminded me that I was not a part of that world, where a woman must seek approval and love through the modification of her natural body according to cultural standards.  Both times, however, my desire to be socially acceptable overcame my desire to leave the beauty mold behind me, and I went back to more conventional clothes and attempting to keep up with fashion trends.  Even in my "uniform," I couldn't escape the focus on appearance.  When I met other young wives and mothers, they frequently remarked about my clothes, and I felt as if my choice to dress so differently came between us.  I sought their approval, and in the end decided that I valued forming new friendships more than avoiding the beauty cult.  While there is a part of me that wants to go back to the uniform, it would be a false representation, because obviously I am not truly liberated from beauty standards, and I'm not sure that true liberation would be expressed this way anyway.  "But must we subdue the fertility of the female body and truncate our emotional life to function authentically in a male world?  Must we surrender to the images and meaning that our bodies have received in culture, embracing their assigned sexual power to further our own ends?  As we silence our body or manipulate its meaning, we end up more alienated than ever, live sculptures for the male gaze and caricatures of ourselves" (Berger 25).

All these struggles are why Berger's book stood out for me when I saw it in the bargain bin for $5.  The price, as it turns out, is a real insult to her research and the significance of the body in women's search for spirituality and authenticity.  I directly relate to the mental struggles she describes.  "Yes, we were good girls and followed the script handed to us by the second wave of the gender revolution in the 1960s and 1970s.  We attempted to redefine womanhood on our own terms with a 'You go girl!' attitude.  But we are still haunted by the question What is a woman?  In the last forty years women have attempted to unpack this for themselves: Is woman simply a womb?  a domestic goddess?  eye candy to be consumed by the male gaze?  Or are we more than our bodies?" (24).  

I shudder to think what I am teaching my daughter about the value of beauty, or what beauty even is.  I see her striving for it, and already I'm afraid, because as of yet I have no answers for her.  I want her to believe that true physical beauty can be seen in the great variety of appearances and abilities that God has given to His women, and that the purpose of her body is to bring Him glory, but I don't even know what that means for myself.  And as long as I am staring discouraged at the number on the scale every morning, and marinading myself in tanning lotion at night, she is watching.  To simply say that appearance doesn't really matter is certainly one option, but how long will it last?  It can't last forever because the hard truth is that appearance does matter.  True, the last time I checked the Proverbs 31 woman was not worried about how she looked in a bathing suit, but as I've said, standards of beauty are culturally determined.  Short of isolating ourselves in a way that is socially unhealthy and unrealistic, we can not avoid cultural scripts.  Somehow the body must be negotiated.  Our bodies must be incorporated into our understanding of ourselves.  I just haven't figured out how yet.  

A Mothers Day Message For My Children

To my oldest:  I love you for your tenacity and perseverance.  You were born from the belief that parenting was a divine calling, and that creating good people was a blessing we could bestow upon the world.  You were born to a mother who despite years of playing grown-up, was still very much a child herself.  You were born under the assumption that it was possible to parent the right way, and that each and every move I made was shaping you forever.  You came as you grew and as you live --with endless hard work, painful moments that gave way to pure joy, and a reluctance to embrace what eventually become your passions. Your parents were poor but blessed, and brought you home to a one room apartment where your crib sat next to the refrigerator.  Your screams in the night were like the moment just before a car accident.  You forced me to learn how to rock a baby and use the toilet at the same time.  You challenged me past the point of insanity, and left me wishing that I'd never taken this path, yet knowing all the while that you were also one of the greatest things that would ever happen to me.  You taught me that it is possible to love so much that you ache, that you want to run away from it because the desire to be perfect and to live up to what it deserves is so much that you know you will be forever a failure.  You made me question whether I would ever be able to care for you, whether you'd be better off without me.  You made me see that there was so much in me that hurt, that needed to be healed, that needed attention.  That it's possible to scream along with your child and mean it.  You taught me that it's possible to give all of oneself and have it still not be enough.  You taught me that it's OK to ask for help, to admit that you are trying to do something completely beyond your power even when it is in fact your responsibility.  You lived through a suicidal mother, forced feedings, never ending diaper rashes, and horrific blood tests.  You showed me that it's possible to live on toast and noodles for years and still grow.  You showed me that sometimes you have to be pushed kicking and screaming into the best possible place you could be.  You showed me that one simply can't raise a child on her own.  You are showing me what it's like to love people deeply and still have no idea how to speak with them.  You are showing me that relationship doesn't have to be about conversation.  You are showing me that it's OK to back into a hug, to retreat to the reading corner, to cover your ears at unpleasant noises, and to need your food made just the right way.  You helped me know who my friends were, and who they weren't.  You've shown me what it's like to be deeply connected to someone you don't understand. You showed me that a school with broken toilets, no air conditioning, and a dilapidated and partially flooded building in one of the worst sections of the city might be exactly where you need to be left everyday. You entered school at barely three years old, unable to speak without repeating phrases from children's videos, unable to drink from a cup, to use the toilet, or to separate from me for even a few minutes.  Now, at seven, you read and write superbly, you have friends who play with you as an equal, and you tell stories about your day. You also chew your shirt sleeves and eat dirt. Once I thought you might never grow up, and now it is happening so quickly that I look at you and wonder if I'll ever have the kind of relationship I really want to have with you.  Where have you gone, my beautiful, squalling, train wreck of a child?  You are beginning to look and act like a mature girl, and I have done nothing to bring you this far.  I can take no credit for this person you have become; everyday you work harder than any of your friends will ever know to simply move and live in a world that you don't have the right instincts for.  At times it seems that you do it effortlessly, and at other times I watch you struggle and become sad and angry, faced with the hard work you must go through just to have what everyone else takes for granted.  You inspire me to look at every person I meet as an amazingly unique and complex child of God, and have taught me not to judge in any situation, ever.  You are my only girl, my precious one, my thinker, my sage.  It is possible that you have taught me more than any other person on this earth.

To my middle child:  You arrived in the middle of the worst moments of my life, bringing with you an equal mix of hope and trepidation.  You were unplanned, unexpected, and I was unprepared.  When I learned that you were inside me I cried in fear of the type of mother you would have when you were born.  I felt sorry for you even before I knew you, believing that I could never be a good mother to you.  With your birth I realized that God expands our hearts in direct proportion to the love He places in them. You came as you have grown and as you live --fast and furious, with unrelenting waves of pure energy and enthusiasm.  With you in a sling and your sister on my hip I stood barefoot in front of my doublewide trailer, yelling at my husband, and wondered when I'd become everything that I never wanted to be.  From birth you had to make accommodations to a family whose life had been full before you arrived.  You did not have a bedroom until you were two.  You slept next to me on a mattress on the floor.  You taught me to laugh.  You showed me that parenting could be fun and rewarding, that it was OK not to be perfect, and that sometimes the best way to handle the unexpected is to embrace it with a hearty smile.  You threw the sofa pillows into the tub with your sister, and I laughed.  You rubbed tomato sauce and ricotta cheese into your hair, and I laughed.  You pooped all over yourself and your father and I laughed like crazy.  You brought joy to a family that needed it desperately, and you continue to infuse every moment with a vitality that is absent without you.  You showed me that I can have and raise a normal child, and that no child is normal.  You showed me what it's like to be amused and exasperated simultaneously.  You have an insatiable need for attention and knowledge.  I have lost so much of your earliest years to exhaustion and traumatic memory loss, but I know that with you came a ray of sunshine, a hope for new possibilities and a future that was bright and beautiful.  You cherished me.  You wrapped your arms around me when you saw me cry, and you smiled and asked, "Are you happy, Mommy?" and then jumped for joy when I said yes.  You have moved me forward and kept me going when I wanted to give up.  You have renewed my energy when it seemed like I had nothing more to give.  You light up every room you walk into, announcing, "I'm here!" and the people inside are as happy about it as you are.  You've taught me that maturity isn't all it's cracked up to be.  So much of my joy is entangled in your person.  One day I lost you, and in the ensuing moments of terror I wondered if anyone else would ever be able to show me how to be happy.  Your favorite color is orange, which in a way defines you by itself.  You were my skinny, baldheaded, big-earred baby boy and now you are becoming the little man we have always called you to be, who shows us the fun in everyday life.  As your first teacher said, you are enthusiastic about your yes and your no, and you never cease to challenge us.  Where have you gone, my sweet little Manny Man?  You have become the spitting image of your father, and are a constant reminder of the love that brings us all together.

To my baby:  You are my prize, my reward, my sweet relief.  I prayed for you to come into my life for months, loving you even before sperm and egg united inside me.  With you I wanted the chance for a new beginning, an opportunity to fix the mistakes I've made in the past, to enjoy each moment of babyhood and not be in a constant hurry to achieve the next milestone.  I revel in you, I breathe you in, I hold you a little longer and remind myself that anything else can wait, but you will grow up and not be this smiling, needing, warm little bundle that you are now.  With you the pressure is off.  I have already seen myself a parenting failure, I have already seen myself make every mistake I said I would never make.  I have already seen myself say and do things that I would judge others unfit for doing.  With you I know that I am who I am, and God has put you in my life to refine me.  I know that much of the beauty of your growth will not result from anything I have done for you or any choices I make in raising you.   I know that you will still love me if I am not always a good mother, and that you will not cease to trust me if I leave you to cry for a few moments while I use the bathroom or finish my lunch.  I know that a baby can get a few bruises without suffering permanent damage.  I also know that, as they say, the days are long and the years are short, and in no time you will be grown, living a life that I know little about.  So with you, I will try to capture each moment, each portion of time that I am close to you.  I will look into your eyes as you suckle my breast; I will sing silly songs to you in public and not worry about what other people think; I will laugh when you make messes, and I will dance when you dance.  I will do my absolute best not to begrudge you your need for closeness to me, and every time I lug you around for hours until my arms hurt, I will remind myself that it will only be a short time until I wonder if I've hugged you enough.  You have brought simplicity into our life.  You came as you live --with a straightforward ease, uncomplicated by the world you have entered.  With you I have found my peace with motherhood, and I can exhale, knowing that I am being and have been the mother God called me to be --sometimes good, sometimes terrible, yet growing and living out a very gradual and clumsy movement toward integrity.  With you I will know that mothering is not a job, but a role, a calling to the constant creation and sanctification of relationships.  With you I will be imperfect and exactly what you need.  With you, our family is complete.  Where are you going, my years of stretch marks, weight gain, sling wearing, and constant breast-feeding?  You have grown into a family that will grow and love and learn and do amazing things long after I am gone.  You have become my legacy, the part of me that will still be here when I am with my God in my eternal home, the part of me that will linger in the hearts of generations who will forget my name.  You have become the greatest gift God has given me.

IC, DJ, and HT --Thank you for where you've been, who you are, and who you are becoming.  I love you.

Everything and Nothing about Autism

Everything I need to know I learned in Applied Behavioral Analysis.

I just finished watching Temple Grandin, and HBO movie from last year.  Temple Grandin is a female professor at Colorado State University who speaks on and studies animal handling.  She is also autistic.  I can't claim to have done a lot of research on her, and I have not even read her books, although I'd like to.  I can't tell you that learning about Temple Grandin or how her mind works will help you understand an autistic person.  It was a good movie though.

My little girl is autistic, and she is everything and nothing like Temple Grandin, or how Temple Grandin was portrayed in the movie.  There was one point in the movie where it showed Temple being very scared of an automatic sliding door at a dollar store; IC is afraid of the doors like that on trains and elevators.  She mostly seems scared that either the door will compress someone, or that the door will close with someone, like herself or me, on the opposite side of her.  Temple was shown eating only yogurt and jello.  IC eats probably about 10-15 different foods, all of which must be prepared to her exact specifications. But there are huge differences too.  Temple has stated, "the part of other people that has emotional relationships is not a part of me" (Wikipedia article, see above).  IC is very invested in her emotional relationships, and has even stated that she wants to be a mother when she grows up.  In fact emotional relationships seem to be a major interest for her, but she looks at them differently.  She likes to analyze them by saying, "Daddy is your husband.  You are Daddy's wife.  Daddy is my daddy, and DJ's Daddy, and HT's Daddy.  I have two brothers.  I do not have a sister..." and on and on.  Temple describes her mind by saying that she thinks in pictures, and was portrayed in the movie as having the ability to take a mental photograph of whatever she is looking at and remember it indefinitely.  I theorize that IC can perform this mental photography as well, but as of yet she has not shown the connection with math or engineering.  She is more likely to connect her "mental photograph" memory to words.  For example, there is a bulletin board in her school classroom with each student's name and birthday written on a cut-out shape.  IC can reproduce this bulletin board at will, and can list every birthday in her class, as well as her family, in order by month.  She can do this as fast as she can write them down; she doesn't have to think about it.  She can tell you the day and date of any event she deems important for roughly the last two years, such as what day of the week someone's birthday fell on, or when was the last time it rained.  Yet she struggles immensely with trying to understand what other people might be thinking.  If she says something to you, and you don't look at her or respond to her, she doesn't know that you didn't hear her; usually she doesn't even notice your lack of response, or if she does, she doesn't know what it means.

Now I'm going to tell you that I have no idea if anything of what I just wrote about IC is true.  There are times where I must advocate and argue and get angry so that my daughter can get the help she needs, and the truth is that I'm never completely sure what she needs; it's usually just my best guess.  It would be for anyone, with any child.  Think for a minute about how you interact with someone and what you're thinking while you're doing it.  You're thinking about what they're thinking, how they're responding to what you're saying or doing, and you're determining how to continue with the interaction based on that.  You're in effect comparing your perspective  with theirs, and that is how you know them- only through your own lens.  I think my lens isn't very successful at zooming in on my daughter.  In fact, I wonder if my neurology will ever allow me to understand her in a way that is meaningful to her.  And then I wonder if being understood is even important to her.  After all, I only assume that it is because it's important to me.

The truth is that my neurotypical brain can not understand her autistic brain.  The issue is much more complex than the problem of neurotypical v. autistic thinking.  As I said, my daughter is everything and nothing like Temple Grandin, yet they share the same diagnosis.  She is everything and nothing like Mordecai, a little boy she went to school with for two years.  Mordecai's needs were overwhelming.  His sensory and stimulation issues were so severe that his goals at school were things like learning to sit in a chair without falling out, walking down the hallway without falling down or needing to be restrained.  While Mordecai was working on these things IC was in the same class, working on writing letters, learning to introduce herself and listen to others and respond in a conversation.  Different needs, different levels of care, yet the same diagnosis, the same label, the same category.

Raising, caring for, and watching IC grow has taught me more than I ever could have imagined about people, and their differences and similarities.  IC and I stare at each other across a line between "autistic" and "neurotypical".  It is not a solid line, it's more of a spectrum, with complete autism on one end and complete neurotypicality on the other end, and everyone falls somewhere along the line.  By some measures the space between us on the line may not be that big at all, but when I need to help my child understand something, and I have no way to explain it or teach it other than the way I understand it, that space is like the grand canyon.  I can only imagine what that space must have felt like for Mordecai's mother.  But what I've learned is that that space isn't necessarily there because she has autism and I don't.  It's there simply because we are two different people, and our lives and experiences and thoughts and feelings differ by necessity, with each difference building that space between us.  IC and Mordecai are both autistic but IC was probably closer to me on that spectrum line than to him.  My mother and I are both neurotypical, but maybe I'm closer to IC than to my mother.  Our God-designed brains are only one factor, it's the choices we make with them and the feelings we feel with them that create the distance between ourselves and others.

When I found out that IC had autism, it felt like a death sentence.  Words can't really describe what it felt like without either trivializing it or sensationalizing it, but I cried almost non-stop for days.  I was aware that different people with autism succeeded at different levels and that it was hard or perhaps even impossible to predict at the time of diagnosis what the outcome would be for my child.  Perhaps she would "outgrow" the diagnosis, spend a few years receiving special therapies at which point she would seem so "normal" that the label would be dropped, and we wouldn't ever have to think about it again.  Alternatively, we could find no therapies that she responded to, and she could remain the same developmental age (at the time, about 24 months) as she was at present.  For IC, the journey so far has been closer to the former.  After a short period of moving around she was placed in a school program that utilized therapies that were very successful for her, and we continued from there, reevaluating her needs and growth every few months to determine what changes were necessary, what new things needed to be done, and what old things were no longer needed at all.  I can't say for sure how much her success has effected my perspective on her and her diagnosis, but as I reflected, the word "autism" changed for me.  It morphed from a noun -- a disease, a handicap -- to an adjective that describes my daughter.  I realized that while the condition shaped her and played a major role in how her mind works and who she is as a person, there is so much more to her than that.  Autism is just one part of her life, albeit an important one, just as it is just one part of my life.  IC is thoughtful, girly, fun-loving, humorous, loving, cautious, careful, picky, emotional, deep, whiny, cheerful, and autistic.

I don't mean to downplay the role this condition plays in her life or anyone else's.  I don't mean to disregard or downplay the huge responsibility that caring for an autistic child is, but what I do want to point out is that every child's experience, autistic or neurotypical, and every parent's experience, is different.  While I think support groups for parents of children with autism are a wonderful idea, I have never gone to one, because I think I'd be just as likely to see the differences between our experiences as I would the similarities.  In the end, I would share with them just as many experiences as I share with any other parent.

IC has taught me to look at people as a collection of their experiences, beliefs, values, ways of thinking and ways of feeling.  She has taught me the dangers and the inaccuracies of categorizing and labeling individuals, as necessary as it is to do those things in our world.  She has taught me that the words we use to describe someone can reveal as much or more about ourselves than they do the person being described, and that in the end, not one single person will fit neatly and perfectly into any category with another, nor should they.  God in His infinite wisdom loves infinite variety.  If I could see in pictures the way Temple Grandin does, and then use that skill to dig inside and analyze all the ingredients that make up an individual, only then could I begin to describe him, and even then it would be through my own flawed and tainted perspective.  None of us is capable of understanding another individual completely on our own, which is why I love believing in an benevolent God who knows me better than I know myself.  For me, the true joy in life is studying the people I love and gathering up all those little bits of information that come together to make up their personhood, and just when I think I've almost got them figured out, they shock the heck out of me.  It's a lot of fun.

A Declaration of Dependence

It's been awhile since I posted.  Since Easter I've felt very busy, and for a long time it seemed like there was just one problem after another.  My children had their spring break from school this week, and I feel like I spent all of it putting out fires, rather than investing that time in quality moments. I argued with my mother, I argued with my husband, and I almost lost my son. I am emotionally exhausted, which makes it hard to write.

In the middle of all of this, E took his finals, and he is finished with his first year of nursing school.  His spring semester has been a nightmare for me, though I can't really understand why I have had such a negative reaction to his new career choice.  We had a long discussion about it last night.  I feel sorry for my husband.  I struggle so much in so many areas of my life, and he loves me, so he is caught in a position of feeling the need to help me all the time.  Just to maintain a loving friendship with me, he must act as my lover, best friend, counselor, advocate, co-parent, leader, follower.  Added to that, he voluntarily takes on the role of cook and food shopper in our home, cares for and/or cleans anything I don't wish to take care of, and never complains.  He also does at least as much parenting as I do.  Obviously we do not have anything remotely close to traditional roles in our home, and this is both a comfort and a concern for me.  I don't wish to change the balance we have, and I find our ability to communicate and care for each other soothing and beautiful.  We understand each other so well that a casual observer might think we engage in some kind of telepathy.  Sometimes I will think, I'm a little hungry, and immediately E will begin making me a sandwich. Sometimes a friend will say something that hurts a little, and E will take my hand.  I have told him many times that we've been doing this for so long that I can no longer tell where I stop and he begins.  If once he was red, and I was blue, we are now purple.

I've realized too that it would be healthy for both of us to develop separate friends, activities, and interests.  Without careful attention it would be so easy for us to nurture no relationships but our own.  Sometimes it feels like he and me against the world.  But life is hectic and difficult and broad, and we need to have other people to rely on.  E seems to want very much to be all I need, and many times he is, but over the years I can see the burden this is on him, though he bears it so willingly.  He has become more easily hurt by me, yet more careful about hiding it.  Sometimes when things have been stressful and painful for a long period of time, I can see him shut down and build a wall between us relationally, and I imagine that this is his only option.  He simply can't bear the weight that my emotional neediness puts on him, so he shuts me out in the gentlest of ways.  All of these are why I am really happy that he felt comfortable enough to come to me and tell me he wanted to make a drastic career change.  Now that he's begun nursing school I am finding that there are aspects of this that are challenging me, and it's unexpected.  The schedule changes, new responsibilities, and new views of the future have brought the the forefront my internal battle with dependence, independence, and interdependence.

Our society applauds independence.  We judge a person's value and ability based on their level of independence, or how much they can do without help.  We celebrate our children's successes when we see them master a skill without help.  We bundle this value of independence with the more modern American value of individuality, and we expect that a person should strive to function independently of help from others, so that ultimately any relationships he or she chooses to have are there by choice and not necessity.  In my lifetime of almost thirty years I have seen independence become the goal, with relationships being made by choice. In many cases we only maintain and nurture the relationships that encourage our independence.  Without looking up the statistics, I see more and more people in my culture choosing to keep all their relationships on a comparatively superficial level of intimacy.  Single children instead of big families.  Child-free living instead of families.  Co-habitation instead of marriage.  Single living instead of intimate relationships.  The people of my generation seem to be increasingly afraid of relational commitments.  We have been taught to be independent, and we are living that out.  Growing up, I remember a friend's mother, who was happily married, telling me that I should seek to be successful and build a lucrative career so that I would never have to stay with a man because I needed his income.  We are the children of modern feminism.

Twenty years later that is exactly the position I find myself in, and I'll be honest, it scares me.  I have been thinking of getting a part time job, not as the insurance policy my friend's mother implied that work should be, but because I feel like there is a need for independent, worldly success running through my blood.  I feel a need to know that I could make it on my own, without E.  I wonder about trying it.  I wonder about running away, changing my name, and building a career as if I could have a clean slate.  I wonder about taking the children and moving into a cheap apartment, getting a job and enrolling them in school and day care.  Or I wonder about getting a full time job right here, dropping the baby off at day care early in the morning and hopping on the Metro with my heels tucked in a tote bag.  I could do it.  It would take some rearranging for childcare and housework, but it could be done.  But why do I dream about this when I have so many friends who live that life, and wish they could be where I am?  And why would I want to do anything that upsets the balance I have with a husband who can sense me, read my mind, feel my feelings? For goodness sake, we're like Eliot and E.T.

Please don't try to speculate which of us is E.T.

As much as I love E and as much as I know I've been given a more wonderful husband than I could have dreamed of, he is not perfect.  It's hard to describe the problems we have to other people.  I think people tune me out if I say anything negative about him.  I understand why.  It's hard to get past the fact that I have a husband who does all the cooking and grocery shopping, more than his share of parenting, supports me in everything, listens to me, and looks the way E does in a pair of jeans.  I hate myself whenever I have a thought that even slightly resembles a complaint.  But E's willingness to jump at my every need is sometimes the problem.  I have no idea if I could live without E.  I imagine that if we were separated, and I had to function on my own, I would fail miserably in the practicalities of my life, and that emotionally I would wither and die, just like E.T.'s flowers.  I have never lived as an adult without E.  We met when I was only 17, became engaged shortly after I turned 18, and married when I was 20. I had my first child a few months after I turned 22.  I have never worked a full time job in my life.  I have no idea what it would be like to do so, and to have to do it.  It's a charmed life, and I have nothing but appreciation for my God who has put me here, and my husband who works hard so that I can focus on our children, our home, and our relationships.  But like my friend's mother expressed twenty years ago, being this dependent on another flawed human being is a risk.  If E left me, I would have nothing.  E won't leave me.  He's said so repeatedly.  As bad as things got last semester, and as many times as I told him that I wanted to leave and taste freedom and life without a caretaker, E never wavered.  He would have let me leave if it meant my happiness, but he would have never stopped waiting for me to come back.  Last week, when the semester was almost over, and my burning need for independence seemed to be climaxing, he said, "You will not remove this ring from my hand without cutting off my finger."

So how do I reconcile this?  I wish I could be a person who could simply choose to enjoy this, and never wonder how it could be different.  I would like to think that E and I live in a state of interdependence; that while our talents and abilities and strengths differ greatly, we have found a way to live that brings them all together in harmony, that allows each of us to gain from the abilities of the other, where neither of us takes advantage of the other, and both receive equal benefits.  But it's hard for me to imagine what E is getting from me.  At worst, I imagine that I am nothing more than free childcare and an organized home.  Even then, the definition of "free" is limited; E more than pays for my services with all that he does for me when he is here, and with all the hurt I put him through in my emotional and psychological struggles.  What is it that he sees in me?  Why is he so committed?  He doesn't express it in so many words. I ask constantly, and the best answer I get is that he is happy and feels loved.  He is loved, and I would love him forever, even if he stopped doing all these things for me.  It doesn't seem like something I can control; I love him even when I wish I didn't.  I need to love him the way I need to breathe.  In the end it has nothing to do with all the things he does for me.  I love him because he is the person I was designed to love.  He says the same.  Mutual dependence seems inevitable, and when I look at it this way, it seems so much more lovely than freedom.