On Having Faith

What I find interesting about marriage and falling in love is how often in saying "I do," by taking the hand of another, we are taking a leap of faith.  We don't know how it will turn out, we don't know what the future holds, but we choose in those moments, those early years, to believe that love is greater than all our faults, that together we are better than we are alone.  And one of the traits of early marriage (the "honeymoon" phase) is just how much we achieve.  We go from two to one.  We bring two of everything:  two lives, two homes, two incomes, two stereos, two routines, two separate and distinct people who somehow must unite into one family.  We are all pretty much in agreement that those years are difficult, that they are fraught with conflict and hurt feelings, changes and turbulence.  But over and over again, couples take that leap of faith and begin a new life together.  Because we believe in it.

Some people say the honeymoon is over when reality sets in.  Gradually, or maybe suddenly, we don't want to have to work so hard at everything.  We are sick of compromise, fed up with sacrificing.  We break our vows in a hundred different ways, but what we are really saying is I don't believe in US anymore.  We've lost our faith.  And isn't it interesting that an affair is often called "being unfaithful"?  We begin to imagine a new life, one that doesn't require so much, one in which the house is always clean and the husband never gets sick and the bank account always has money in it.  We look for someone else to meet our needs, to satisfy our fantasy of love without sacrifice.

We know that fire is destructive.  But fire is also used to strengthen and purify, to mold and shape.  Conflict in marriage is like a fire.  It can bring us together or leave us sifting through the ashes.  There are times when marriages should end.  There are hurts and breaks and wounds that can't heal together.  There are abuses that shouldn't be tolerated, there are boundaries that shouldn't be violated. But there is no relationship that will come easily all the time.  There is no commitment without work. There is no love that doesn't change and transform you.

When the honeymoon is over, that is when Real Love begins.  We keep showing up, day after day.  We put in the long hours and the sleepless nights and get through the droughts and difficulties together.  We begin to realize that this family we are building will never be finished, that as soon as we get into a routine with each other, a baby shows up and disrupts all that.  And again, and again, as we add little people, we scramble to keep our heads above water, never actually getting a chance to sit back and see all that is happening as the moments blend into each other and take up all our time.

I think this is why we celebrate anniversaries.  It's a chance, at least once a year, to look back and see all that we've accomplished, all the growth that has taken place.  It's a day to see all that has come from our act of faith.  And we can keep going with proof; proof that we work, proof that we have become so entwined that we are truly one flesh.

So here we are, entering year 11, moving away from the sleepless nights of babies to the busy evenings of easy readers and math worksheets, no longer the young couple working so hard to create something but still working hard to keep it.  

To the one that I love: I believe in us.  I am thankful for each day that we get through together, for all the ways that we hold each other up.  And I have faith that the best is yet to come.

Perspectives

Something wonderful happened this weekend.  We went to church as usual, and when it was time to sing the kids' song which involves running around the room, James leaned over and whispered "Help me." He wanted to do the dance moves and join all the other kids, but he also hates to bump into people.  So we stood to the side and did the motions, and when the time came to run, he climbed on my back and off we went.  I don't think he's ever done this.  There was a game he wanted to play, and so I gave the condition that I wanted him to participate in his lesson and let me participate in the adult time, and then we could play after church.  His teacher reported that he did, in fact, join in with the lesson.  I got to have some adult conversation.  Afterwards, we played the game.  As we left, I felt victorious.  This is progress.

And sometimes I think we spend all this time sharing such victory stories, talking about how far our kids have come and what they are now capable of.  It's exciting.  It makes all the therapies and attention and work seem worthwhile.  But there's another side to all of this.  And I consider it just as big a victory to realize how much I have shifted my own behavior and expectations to make our home welcoming and comfortable for James.  Yes, my son needs to learn how to get around and get along in this confusing world (to act "normal"), but it's also important for our family to act autistic.

I read a fascinating book a while back, Far from the Tree by Andrew Solomon, about how families cope with the addition of a child with a disability.  The book opens with a chapter on Deaf people; it is well-researched and thought-provoking, and it introduces two types of parents.  These two categories play out in each subsequent chapter, whether the parents are dealing with a deaf child, an autistic child, a schizophrenic child, a dwarf child.  One type could be called the Deniers.  It shocked me to read, but some parents, when presented with a child who cannot hear, simply ignore it.  They make no accommodations, no effort to learn sign language, and either the child suffers horribly or he is shipped off to a special school for the hearing-impaired.  Yikes.  Let's call the other type of parent the Embracers.  Embracer parents learn all they can about their child's diagnosis.  Many of the folks interviewed in the book started schools or community groups, moved across the country and changed careers, all for the purpose of helping their child have the best life possible, making opportunities where none existed before.  For the parents of a deaf child, embracing the diagnosis usually involved learning sign language.  For those whose children were diagnosed with dwarfism, it means traveling each year to the Little People of America National Conference, where their child can socialize, get medical consultations, and celebrate their short stature.

What does "embracing the diagnosis" mean for parents of autistic children?  There is no common communication style or national convention that gathers others like our kids.  We have a plethora of professionals who can offer guidance and advice, provide services and create plans.  We have our instincts to love and protect our children, and quite possibly our own sensory issues or social anxieties that look a lot like struggles our kids are having.  But most importantly, we have vital perspective of autistic adults.  Thanks to the internet and blogs and social networking, adults living on the spectrum have found a way to voice their thoughts and experiences.  They offer us a window:  this is what it feels like in an autistic brain, this is what it looks like to go through life and live in a world that celebrates neurotypical abilities.  And yet, so often we continue to ignore them.  (Myself included...as a mom, I prefer to read blogs that are written by other moms.)

So this is the challenge, which is meant to celebrate April as Autism Awareness Month, but for me, should just be a habit.  Read blogs written by individuals on the autism spectrum.  Listen.  Validate.  And most likely gain further illumination about what it feels like to be my son.  Because if he has trouble communicating, then I should assume at least half the blame.  Relationships are supposed to go both ways, so if I want to hear him talk, I need to create a space and time for him to do that.  I've learned that he doesn't want a microphone or a stage like so many others.  He wants me to climb the ladder and sit in his bed with a blanket over both our heads, and be still.  It's not easy for me, the one who loves to talk and write and share ideas, but it's necessary.  And I'm offering the challenge to each of you as well.  Let's open our eyes and ears and close our mouths and read what these people have to share.  Let's learn something new and appreciate a different perspective.  Let's share the spotlight with the true experts.

I'm starting here:
I am already familiar with the blogs written by John Elder Robison and Emma/Lemon Peel.  I've gotten some great advice reading Bec at Snagglebox and M Kelter.  I also regularly listen to the Loud Mute Radio podcast. 
This month I'll also be reading Amy Sequenzia, Autistic Hoya,  Just Stimming, and Unstrange Mind. Diary of a Mom lists many more, and I'm sure each of these blogs can direct me to other autistic writings as I go.
The challenge is to read at least 10 entries per writer.  My hope is to find more insight into the world of autism, and maybe a new favorite blog.  Also, I think it's time we start trafficking websites whose content is written from a first-person perspective.  It feels weird to write a blog telling you to read someone else's work, to acknowledge that my my point of view is limited and probably not very helpful.

FIVE MINUTE FRIDAY: Relief

Welcome to Five Minute Friday!  This community was founded by Lisa-Jo Baker, who hosted the weekly link-up on her blog for four years before passing it on.

If you’re new here or haven’t participated before, here’s how it works:

Every Thursday a one-word prompt will be announced at www.katemotaung.com at 10pm EST (and continuing through Friday).

Those who’d like to participate in Five Minute Friday will write for five minutes on the topic of the week, post it on their own blog and link up the post here.
GO.  

The alarm is going off. Again. Time to get out of bed, for real. Time to round up the pajama-clad boys scattered about the house and dress them for school. Time to pack the lunches and make their breakfasts, always with an eye on the clock. Because at 8:42 that bus will pull up, and my 2nd grader needs to be on it. Then it will be round two of find the shoes and get your backpack and the daily fight over whether to wear a thin jacket or a warm winter coat and then down the stairs to drop off the kindergartner. If I make it before the tardy bell, I feel a sense of victory.

But that isn't it. There is still a wild, energetic, opinionated 3 year old in the backseat who wants to have fun, be entertained, see his favorite people. There are meetings and Bible study and appointments to get to. Always with the eye on the clock. Time to have fun, but a busy kind of fun. Time to play and be loud and listen and learn.

Relief comes when the clock nears noon. Time to sit and eat, time to lay down for a nap and read a story. Or two. Time to close the door and...silence. For the first time all day, my time is my own. I can read. I can watch. I can close my eyes and focus my breathing and RELAX. Never watching the clock. Only waiting for the tiny voice to resume, for the door to open, for the end of nap time and the pick-up run. Relief is short-lived these days.

STOP.

On Wheelchairs (World Autism Day)

My family and I are vacationing at Walt Disney World.  It really is the happiest place on earth...except at 1pm as we are dragging a weary three year old back to our hotel for a nap on a crowded bus.  We are surrounded by smiling faces and sticky fingers, by princesses and monsters, by magic and innovation.  One thing that I have noticed over and over again is the number of people in wheelchairs.  It's incredible to see how these parks have made it possible for the physically disabled to experience just about everything that my able-bodied family is enjoying.  From the buses and parking lots to the restaurants and rides, there are designated accommodations for individuals and families arriving with wheelchairs. (The Small World ride has a boat specifically for passengers in wheelchairs and their companions.  Amazing.)

Sound-muffling headphones are a simple accommodation
to make Disney World enjoyable for everyone

Tonight, I found myself imagining the world before the invention of wheelchairs.  What was it like to break a leg or suffer some other injury that prevented a person from walking?  What was it like to suddenly find yourself paralyzed from the waist down, or to give birth to a child whose legs didn't work?  Most people were probably bed-ridden, trapped in their homes or medical facilities (or, let's be honest, some sort of depressing invalid ward).  And prospects would have been infinitely better for those experiencing a short-term affliction versus those whose diagnosis meant lifelong confinement.  Families were probably distraught over the loss of their loved ones' mobility, as it would require more time and effort to care for this person, and there was no way he would ever earn a wage or live on his own.

Historians have found evidence from thousands of years ago that the Chinese invented a wheeled device for transporting people, but wheelchairs as we know them didn't come about until the early 1900's, and it was only the passage of the Americans with Disabilities Act of 1990 that led to the wide spread accommodations currently in place.  In other words, it's been a long time coming.  The physically disabled have always been with us.  We haven't cured disability, but we've made it possible to live full lives in spite of it.  (I used to work with a guy who used a wheelchair.  He drove himself each day in a car specially equipped with hand controls.  I'm pretty sure he earned more than me too.)

I can't see the destination but I love watching the journey

And here I am, on April 2nd aka World Autism Day, engaging in a Facebook debate about cures vs. accommodation.  Shouldn't people be researching a cure for autism?  Wouldn't you rather that your child didn't have this neurological disorder?  Maybe it's too late for your family, but shouldn't future cases of autism be prevented?  To each of these questions, let me quote from the website www.cerebralpalsy.org:
  "Treating cerebral palsy is almost as complex as the condition is, and there's no cookie-cutter approach because each individual is affected differently.  Although the brain injury that causes cerebral palsy cannot be healed, the resulting physical impairment can be managed with a wide range of treatments and therapies.  Although there is no universal protocol developed for all cases, a person's form of cerebral palsy, extent of impairment, and severity level help to determine care."
The course of treatment recommended includes:  optimizing mobility, managing primary conditions, controlling pain, preventing and managing complications, enhancing social interactions and fostering self-care, maximizing learning potential, and providing quality of life.  Reads like a caregiver's guide for autism as well.  And this is why I don't think finding a cure for autism is a good use of science or funding.

James' smile is the cure for my grumpy moods

Autism is a neurological difference.  It doesn't need a cure.  It does require a course of treatment, therapies and interventions and managing its effects.  Just as the wheelchair has transformed the lives of individuals with physical differences (be it injury or fatigue or muscular spasticity), our autistic loved ones need accommodation for their brains.  I believe research is better spent finding the Autism Wheelchair.  First, because unlike an autism cure, autism interventions and assistance actually exist.  Second, because this will make not only the lives of future generations better, it will make a world of difference RIGHT NOW.

Over a million Americans use wheelchairs to participate in the world around them, to take vacations and work and go out to eat.  More than 3 million Americans are living with an Autism Spectrum Disorder.  They don't want to be "fixed", they just want to be heard.  Instead of eradicating them, I suggest we listen.

www.autisticadvocacy.org
http://www.autism-society.org
http://muleandmuseproductions.com/blog/
http://jerobison.blogspot.com
https://emmapretzel.wordpress.com

Five Minute Friday: REAL

Every Thursday a one-word prompt will be announced here on my blog at 10pm EST (and continuing through Friday).

Those who’d like to participate in Five Minute Friday will write for five minutes on the topic of the week, post it on their own blog and link up the post here.

GO

Well there's a scary word.  REAL.  Who actually knows the "real" me?  And is our internet obsession and online presence ever truly real?

Facebook friendly: with makeup and hair done

I liked walls.  I liked to keep people at a distance.  I wanted them to see a version of myself, not the "real" me, and I was afraid of anyone getting too close and seeing behind the walls.  I found that sarcasm is a great wall-builder.  So is humor.  And lies.  And just plain being mean.  I worked hard to build my walls, and I thought of myself as dwelling in some fabulous castle behind my fortifications.

But then God showed up in my life.  He made His presence known.  And one very important thing to know about God is that he is a wall-destroyer.  Just look at the Battle of Jericho in the book of Joshua.  Those people did absolutely nothing but walk around for a week and play some music.  God is the one who made the walls fall down.  And He did the same for me.

Making silly faces with the boys

My choice would have been to open a door and let some people in.  Or to step outside the walls from time to time, but leaving them standing so I could retreat if necessary.  But God's plan for me (and His plan for you) is to demolish the walls, to leave nothing between me and Him, nothing between me and the people I'm meant to know and love.  Without walls, they can get to know the real me, and maybe they will love me when they know the real me.

STOP

Love and Marriage (10 Years In)

A few years ago, our pastor preached a sermon on marriage and told the story of Adam and Eve.  You know how it goes, right?  The world was created, then Adam and Eve were created to live in it and care for it.  They were made for each other, to be helpers, partners.  The Bible tells us that they were friends with God, that they were naked, and they felt no shame.  But then...then there was the forbidden fruit, the Fall, the Covering, the Curse.  The man and the woman hid from God and they made clothes to hide their bodies from each other.  I sat in my seat (3/4 of the way back, where I am most comfortable) and I thought about this story.  Like, really thought about it.  The end of the story, well, that all sounds very familiar.  Shame?  Secrecy?  Hiding from everyone, even God?  Oh yes, I know it well.  But back to the beginning.  That part sounds amazing, and impossible.  I wondered if that would ever happen for me and my husband.

I think every love story is a reverse of the first one.  We begin distrustful of the other--fallen, covered, cursed--yet we long for this person so much that we overcome our fears and we take that leap.  We imagine a Paradise, a personal Garden of Eden where we can return to that original state, and look at each other naked and unashamed.  But how do we get there?  What steps do we take, how do we change?

I've been married for ten years:  ten busy, stressful, happy, confusing, lonely, lovely, life-changing years.  By no means have we "arrived", nor would I call myself an expert.  But I've seen glimpses of what true partnership can be.  It is so good.  Turning to another person and having him meet my needs.  Telling the truth-the whole truth-and he listens and accepts me as I am.  Tackling tasks (whether it is the dishes or raising the children) together and realizing that it takes half the time and energy when we are both giving it our best.  This is how two become one.  By taking care of each other.  By supporting each other.  By working together and building one life, one family, one home.

It really hit me when I asked my husband to buy a new mascara for me at the store.  He was heading out to get groceries with one kid while I stayed home and entertained the other two (it's just easier this way).  I needed a new mascara because I lost the other one.  I found it a few days ago in a box of tampons.  Who knows how it got there.  When I couldn't find it, I assumed it had gotten thrown out by accident or eaten by one of the kids.  So Chris can get me a new one, right?  He doesn't know anything about makeup, but this is what I did: I told him the exact name of what I wanted.  I texted him a message so he could reference it when he got to the store.  It's in an orange tube.  He got there and called me to say they didn't have black, but they had black/brown.  Would that be an okay substitute?  Yeah, it's fine.  And he came home with exactly what I had asked for.  It seems like such a small thing (I mean literally, what's a tube of mascara?  4 inches?), but it represented something huge.  A milestone of sorts.  For the first few years of our marriage, he would go pick up sandwiches for us and I would write out exactly what I wanted, the way you do with your co-workers when everybody orders out.  And he would always bring home French Onion chips.  Why did you get those?  Don't you like them? No.  Oh, well I thought you liked something gross so I figured it was this.  Every.  Single.  Time.  For years.  And I was disappointed because I thought my husband at least should know the kind of chips I like.  It went both ways, truthfully.  I would buy the wrong candy (But I thought you liked this?).  He would buy the wrong shampoo (NO, the green bottle!).  I would pick a movie he hated.  He would listen to music at night.  And on and on.

I'm an independent kind of person anyway.  I know I can at least trust myself to do things the way I like.  And that's a great mentality for a single woman.  But it doesn't make a marriage work.  The partnership that we all crave (whether we say it out loud or not, you know it's true) is the Good Thing that we hope will happen when we say "I do."  But what I've learned over these past ten years is that you only get the Good Thing after you do the Hard Thing.  And the Hardest Thing is to trust.  To be open.  To say, "It really bothers me that you don't remember what kind of chips I like.  I want salt and vinegar."  And to be willing to figure out how to help him remember.  Maybe he needs a text.  Maybe he can only handle a list that has one item on it.  Maybe he needs to carry the empty bottle with him to the store.  (And, for the record, maybe he needs to be slightly less self-involved and pay attention.)  And that goes both ways.  Once you start getting the lunch order right, then you can move on to the bigger things.  The insecurities.  The fears.  The hopes and dreams for the future.  Honesty and vulnerability are Hard Things.

It's a Hard Thing to stand before another person, to bear your soul and your body and the rest of your life, to be naked and unashamed.  And how amazing for him to strip down too, to lay it all out on the table.  Not just that, but to accept you for who you really are, and for you to accept him fully.  That's the Good Thing we are working towards, what makes this all worth it.

Scabs, Wounds, and Healing

Michael fell a few weeks ago.  He was running barefoot at the pool (insert lifeguard whistle) and tripped on a little ledge and went sprawling.  I hurried over, knowing he would need me even before the cries began.  I held him and patted his back, I inspected his knees and hands, I kissed his and head and "I got ya, it's going to be okay".  He kept crying, which was strange, because I didn't see any blood.  It seemed like too much for just a bump.  Then I shifted his body and I saw it: a giant bloody toe.  I had looked in all the expected places for an injury, but it was his toe that had been scraped of skin and was bright red.  I took him to the lifeguard station and we did the usual, antiseptic wipe, pressure to slow the bleeding, a band aid.  I kept holding him for several more minutes, then he was ready to get back down and play with his friends.  We changed the band aid when we got home, applied some Neosporin, covered the foot with a sock so he wouldn't mess with it.

About a week later, he came to sit beside me.  His feet were bare again, and he was looking intently at his injured toe.  He touched it gently, and I noticed that a huge scab had formed over the cut.  "Does it still hurt?" I asked him.  He nodded, still looking at the toe.  "That's called a scab," I explained.  "The scab grows over your cut like a natural band aid and it stays there while the skin heals underneath.  Then, when it's ready, your scab falls off."  I was about to say, "And it'll be like it never happened," but I stopped myself.  That's not accurate, I thought.  I mean, he still remembers the fall and the pain a week later, and while he might forget about it over the course of his life, it's not going to go away.  It was a big enough cut that he'll probably have a scar , a silvery patch of new skin to remind him of the fall.  So instead I said, "When it's ready, your scab falls off and you'll have a little scar where you got hurt.  But once it's healed, it won't hurt you anymore."  He looked at me then.  "It won't hurt no more?"  Nope, it won't hurt no more.

I thought some more about wounds and hurts.  I thought of James, who hits his bruises, hoping it will make them go away.  I thought of my sister, who would pick her scabs too soon and bleed, who would pour nail polish remover over her cuts.  Thankfully she learned better wound care in med school, and when she performs surgery, she stitches and glues and pieces her patients back together.  But it's not just our physical wounds that we mistreat, that we run dirt into or pretend they don't exist. We do this in our wounded hearts, we use crude, ineffective means to cover and hide and our hearts just get mangled in the process.  There is only one way to wholeness, one course of treatment in our bodies AND our hearts to fully heal.  We have to flush our wounds, treat with antiseptic, cover with clean bandages, and we have to let our bodies do the hard work of rebuilding.  We need new skin, new nerves, new connections to grow under our scabs.  And we have to wait, to allow the healing process to complete itself.  Only then can our scabs fall off, our bandages be removed, our bodies and hearts be free to live fully.  Not as pristine as the original, but whole as our scars entwine us and help us to move again.

http://desertstream.org/living-waters/