Category Archives: A Day in the Life

Random observations, epiphanies, and bitching in the daily life of a mother of an autistic child.

On Shortcomings and Attention Equity: Hard Truths in Special Needs Parenting

14628103_10208949304104722_2135956070_nThere’s nothing quite like parenting to make us confront our shortcomings.

Mr. Flappiness and Bronwyn are so very alike. They both have diagnosed ADHD – the kind that puts the H in ADHD, if you know what I mean. But they have all the other delightful traits that those with ADHD often have – the creativity, quick thinking, etc. that those of us who love them adore.

But because they are so very alike in temperament, interests, and sense of humor, in addition to the ADHD, they are close. They get a kick out of each other. Bronwyn often seems to prefer him to me, me being a little too low-key to entertain her some days. They’re two peas in a pod, my baby girl and her daddy.

Sometimes, I’m envious of her relationship with him — although I understand it. If ever a woman were a daddy’s girl, it’s me. I wish the introvert and lover of air conditioning in me were less so. She’s beautiful to me, but we’re quite different personalities. Since I share a temperament and personality with Callum, I know some things just are.

But because I love her so, sometimes I envy their closeness and worry – deep in the heart of the mother who raises both a typical AND a special needs child.  I both fear and mourn the certainty there is not enough of me with regard to my daughter. Her needs are great too. The problem is that Callum’s – who is autistic, high needs – are so very immediate and not delayable. 

Mr. Flappiness is on the road often now, and it’s taking its toll.  Big changes for all of us. Bronwyn is taking it hardest.  This morning, she woke up and came in to snuggle with me. She talked about how much she misses daddy and said, “The truth is, Mom, daddy is just more FUN than you.” Ouch.  

I acknowledged the difficulty she’s having, and I told her I’m sorry I’m not as much of her kind of fun (theme parks, producing videos, etc.) as daddy. And my sweet girl put her arms around me and then clarified, “Mom, daddy is more fun than you.  But you’re more loving.  I go to daddy for fun and you for love. That’s what I love about you best.”

Well, hell.  That’s for sure a conversation I’ll replay in my head obsessively as I continue raising these two.  But the combination of those big beautiful blue eyes – my grandmother’s – and those words?  Deep breaths kind of love right there.  Words that felt a little like absolution just when I’m sure I’m failing.  

She comes to me for love.

I may be doing lots of things wrong.  But I hope that statement counts. I have to be doing something right – right?

Bell’s Palsy: My Tour Guide to Autism

bp2In the past couple of years, some clever people have created online autism simulations. Autism simulations attempt to sensitize neurotypical people to what those with autism experience on a daily basis. When you play an online autism simulation video, you’re immediately bombarded with confusing sensory input – loud and discordant sound, bright lights, and camera movements that cause vestibular discomfort. Voices and background noise become one, and the busy world suddenly becomes an unpleasant place in which to reside.

But it’s just a video. Two minutes of noise and visual chaos, and you’re done. I’ve watched them. And, while I appreciate what the creators aim to accomplish with them, I’ve understood that I wasn’t greatly enlightened by the experience.

Bell’s Palsy changed everything.

Four months ago, I pulled into my workplace, got out of my car, and attempted to smile at a co-worker. That’s when I realized half of my face wasn’t working. I walked inside, looked in a mirror, and decided I was having a stroke. After a quick trip to the ER and a brain scan, it was determined that I had simply come down with Bell’s Palsy, a form of facial paralysis resulting from damage to the facial nerves. Relieved that it wasn’t something life-limiting, I returned to work and attempted to feign a positive attitude about my now jarring facial expression.

As it turns out, I had a pretty bad case of Bell’s Palsy. Within a day, my face became overly sensitive. The slightest touch of a fingertip was painful. A fan blowing on my face made my head ache. Because my left eye wouldn’t close properly and I couldn’t squint, bright light became problematic. I could barely see upon stepping outdoors, and bright indoor lighting was disturbing to me. My eyes blinking at different times upset my vision.

But the worst was yet to come. Within two days, the Bell’s Palsy had worsened. And, because I had complete facial paralysis, the muscles that normally dampen sound ceased to work. The condition is officially called hyperacusis, but I called it Superman Hearing. Suddenly, I could hear everything – the filter on the fish tank, the ceiling fan in the other room, the pop in my husband’s jaw as he ate. But it wasn’t simply a matter of hearing everything. The problem was that it was all at the same volume. So, everything became too much. I nearly went into a panic at work. The school bells were painful to me. A pencil dropping on to a desk made me jump. I had to ask everyone to lower their voices, and I couldn’t tolerate radio or TV. I donned headphones and tried not to cry. But my voice amplified inside my head with the headphones on, so I couldn’t tolerate speaking with others. All I wanted was to curl up in a ball in bed in the dark and wish the world away. Because the world? It hurt me.

And – although I’d comprehended that sensory integration issues impacted my autistic child – I now look at him with all new eyes. Because of this experience, he’s even more amazing to me. Amazing in that he walks through life experiencing this (though I’m certain it’s probably not exactly the same) every day. Whereas I shut down for a few days and hid out during the worst of it, he isn’t given that option. He’s 5 years old, and the world is attacking him. When I’m alone with my thoughts and consider that, it steals my breath. And when he curls up in a ball and hides out from the world for a few minutes, I find myself understanding in a way I couldn’t have before.

Did Bell’s Palsy make me autistic? Of course not. Do I now have a complete understanding of the autistic experience? Nope – not even close. Because Bell’s Palsy did not affect my ability to communicate. It didn’t alter how I perceive others. It didn’t change the way I process new information. I still think in words and not pictures.

But Bell’s Palsy did act as a tour guide of sorts. It took me to a place I’d never been and pointed out some key areas I wouldn’t have discovered on my own. It gave me an experience merely reading about couldn’t afford me. It allowed me to see my son and his reactions to the world with a different lens. It isn’t often that we get to live as others before returning to our own lives. But when we do, we are changed – forever reminded that our own perceptions are just that, perceptions. When you realize that your perceptions aren’t necessarily facts, then all manner of truths and possibilities open for you.

So, despite the residual paralysis, pain, and hearing and vision issues I’m still experiencing, I understand this lesson to have been both painful as well as a gift.

Of course, the most valuable lessons in life usually are.

 

I Let Him In: When Depression Comes Knocking at a Special Needs Parent’s Door

doorknock

This was not an easy post to write.  It was even harder to hit the publish button.  But when I decided to put myself out there, I did it with the intention of letting others know they are not alone in their journeys.  This is one snapshot of mine.  

I’ve said before that depression is much like an old lover.  One you’ve successfully managed to get out the door – along with all of his things – and begin a new life.  A life in which laundry gets done, friends get visited, lists get checked off, balanced meals get cooked, and the things you enjoy get enjoyed.  But something or a lot of things happen.  Usually in succession and often involving sleep loss, grief, financial or marital stress, etc. — and, under the weight of exhaustion, your resolve weakens.  That’s when he comes looking for you.  Whispering in your ear.  Telling you all your efforts are futile.  Crooning the familiar songs he sang to you before.  Knock, knock, knocking at your door.  Until you open it and invite him to come inside — and his seduction is complete.  And the next morning –every morning you wake beside him– you know you knew better.  But now his clothes are in the closet, his toothbrush beside yours, and he is ingrained into your life once more.

If you read me, you may have noticed you haven’t been reading me much lately.  I’ve noticed too.  I’ve noticed lots of things.  When I do, I race off to WordPress and create a post, give it a title, and even jot down some of the words that are clamoring to be released. But is isn’t long before he begins whispering to me. This post will take a lot of time.  Of course, if you write it, you’ll likely infuriate someone and will feel the need to respond.  Which will just upset you more than you already are.  You’re tired.  Tomorrow –you’ll write it tomorrow.  Of course, I don’t.  It doesn’t get written.  Thoughts and emotions keep pounding, and everything just gets louder. From the dishes being unloaded to the dog’s incessant barking to my children — Bronwyn just being five and Callum being a verbal stimmer. It’s all so very loud.  And all I want is to sit on a porch overlooking the mountains on a cool early morning and hear…nothing.  Nothing but the wind blowing and perhaps a little rain or moving water.  No voices.  No screaming.  No phone ringing.  No cacophony of everything I need to take of.  To sleep.  To read.  To write.  To recharge.  Because I am simply depleted.  I attempt to get my head together and manage to accomplish a thing or two.  But my constant companion draws me back in to myself.  His incessant whispering for me to lighten my load and sit down for a spell.  To put it off for another day.  To pull the covers over my head and attempt to hold the world back.  Yes, he knows how to talk to me.

My heart aches.  My fears bully me.  And even my bones feel tired.

I’m starting to see the things I feared and knew were coming.  I see my sweet little boy, excited by the mere presence of other children — but oblivious to their activities and play.  He jumps, laughs, and flaps away — and has no understanding that he isn’t a part of it all.  Part of me is grateful he doesn’t yet understand– while the other part of me just hurts.  Everywhere we go, we take two cars.  There are few things that we can confidently plan as a family.  It’s too crowded, too bright, too large, too hot, too long.  Too everything. People not seeing the delightful child he really is hurts. His sister having an uneven share of our time and attention hurts.  The looks we get hurt.  His discomfort hurts the most.

Sometimes the view from this ride is beautiful.  Sometimes, it’s fun.  But right now it is making me sick.  And I just want so very badly to be let off.  I want the support of my father, my stepmother, and my grandmother.  I want them to tell me it will be okay.  But they’re dead.  And, every time I get on the highway or have a strange pain, I fear dying myself.  Not for me, but because who will take care of him?  Who will fight for him?  And how – how – do I ensure that his sweet sister will understand that I love her equally though I cannot give of myself to her equally?  Some days – or weeks – it’s too much.

And, in my darkest moments, I fear that I am not enough. That I’m doing this all wrong.  Making the wrong decisions.  Not doing enough.  Doing too much.

Yes, I have been to see my doctor.  I have taken antidepressants.  They helped marginally, but my hair started falling out (a truly unfortunate side effect for a depressed person if ever there was one.)  So the doctor and I are trying again with another antidepressant.  Trying because there is no other choice.  For the alternatives to managing this are unacceptable.  My babies need all of me, therefore depression can be allowed none of me.  There simply isn’t enough room for him in my house.  I’ve told him he must leave.  To pack his stuff and get out.  Good riddance and all that.  So far, he hasn’t budged and has turned into a squatter instead.

But I know something he doesn’t.  I know the unconditional love and trust of two children who depend on me.  I know the maternal bliss of snuggling against their sleeping forms in the wee hours of the night.  And I know that, in this battle between him and me, who I’m really fighting for.  In nature, whoever gets between a mother and her young is always at a disadvantage.  He’d do well to remember that.

“Now the standard cure for one who is sunk is to consider those in actual destitution or physical suffering—this is an all-weather beatitude for gloom in general and fairly salutary day-time advice for everyone. But at three o’clock in the morning, a forgotten package has the same tragic importance as a death sentence, and the cure doesn’t work—and in a real dark night of the soul it is always three o’clock in the morning, day after day.” 

― F. Scott Fitzgerald, The Crack-Up 

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He Proved Me Wrong: On Autism and Presuming Competence

mirrorOne of the phrases that you hear a lot in the autism world is “Always presume competence.”  If you haven’t heard the saying, it’s a simple concept.  Autism is a neurological issue in the brain –not a mental illness or intellectual disability.  Yet, some people assume that it must necessarily coincide with an intellectual disability.  (Which is just an incorrect as assuming that everyone with autism is a genius– another autism myth.) Autism exists in persons with widely different intellectual abilities.  From the intellectually disabled to the average Joe to geniuses.  So, because we currently lack the ability to assess the intelligence of the severely affected, we don’t know what is happening in their minds.  It might be that a perfectly intelligent person is hidden behind his or her autistic traits, and we simply don’t know how to interact with them.  And it could also be that an autistic person may be intellectually disabled and lack – to varying degrees – the ability to comprehend what is happening around him.  But, in the absence of knowing for certain, then we simply must give such persons the benefit of the doubt.  I would certainly hope that – if I were in their shoes – the same would be done for me.

But “Always presume competence” can be a hard rule for non-autistic folks to follow.  That’s not because we don’t agree – at least in theory.  But severely autistic people may not give a lot of signals that they understand something.  They often do not appear to be listening or watching.  And, when you ask them to do something based upon what they have seen or heard, many do not respond as we would expect them to.  In the absence of any visual indicators demonstrating competence, it is easy to wonder whether understanding is happening at all.  For, somewhere in the back of a typical person’s head, we wonder why someone who understands doesn’t respond when it’s in his best interests.  It’s a lot like religion.  You can be taught the tenets of your faith.  You can reason out your belief system in your head.  But, in the day to day grind of living, it is natural to question what we cannot see.  We wonder if there is a God out there.  And we wonder if our severely autistic loved ones really comprehend all that is happening around them.  Maybe you’ve never wondered.  Maybe you are like those fortunate folks who have never doubted their faith.  But, if you’re like me, you have wondered, worried, and sometimes been haunted by the possibility that you are wrong.  Or even that you are right.

When I began to be convinced of Callum’s autism, of the first things a mother of two autistic children told me was never to talk about him while he’s in the room and to always believe that he knows what is happening.  She related stories to me of her children recalling events from years earlier that she had believed they had not noticed.

But they had.  And with perfect recall of the details.  Because they didn’t talk at the time or cooperate with what was requested of them, she had assumed they weren’t listening.  Having known them at that time, I would have agreed with her.  They didn’t appear to be listening at all.  At that time, they could barely talk.  No, we shouldn’t have assumed, but -unfortunately- it’s an easy mistake to make.

Fast forward several years, and now I have an autistic little one of my own.  But even having heard her story, I questioned the truth of it with regard to my own child.  I’ll admit that I was somewhat confident of my own ability to read him.  I thought I would see the proverbial light bulb go off and then I would presume competence.  But Callum, in the grand tradition of children everywhere, has humbled me recently.  We are having a little “language explosion” you see.  Almost every day now, he is surprising us with knowledge he had – but had not previously shown. Knowledge I was so very afraid he wasn’t absorbing.

My smart little stinker is proving me wrong. And I’ve never been so happy to be wrong in my entire life. I worried that he would lack the capacity to advocate for his own needs. That worry ate me alive inside. It haunted me. I was stuck, and I couldn’t get unstuck. It wasn’t that I didn’t believe in my head what others were saying.  But faith is hard in the absence of proof.  My fears for him have been impacting my perception of what he knows and can do.  That has led me to an important realization.  I must tame my fears.  I must accept that fear is nothing but a good survival tool.  Like every emotion, it has a purpose.  It makes us run from danger.  But the only danger with regard to believing in his abilities is the off-chance I’m wrong and suffer the disappointment.  And my fear of disappointment is a selfish reason to give in to worry.  Not disappointment in him, of course, but disappointment that he might not be able to direct his own life.

I have always been a believer in “Prepare for the worst, and you’ll never be disappointed–only pleasantly surprised on occasion.”  Which is a very good motto when building bridges and skyscrapers.  Unfortunately, it isn’t such a great motto when raising developmentally delayed children.  For, like all children, they see themselves reflected in our eyes.

Callum CheeseToday, Callum spoke his name for the first time.  And I missed it.   It sounded more like “Cam”, so I didn’t pick it out of his typical babble chatter until he said it a few more times–while waving at his own reflection in the mirror.  (Yeah, I know.  Sometimes, I am not so smart.)  I remember turning and asked him if he’d said “Callum”.  So he looked back to the mirror, waved at himself again, and said, “Callum” — with the sweetest smile.  I’m sure I stopped breathing for just a moment.  Overjoyed though I was that he finally said his own name, what hit me was his determination to be seen and heard.  He kept on – until I got it — and then confirmed it.  Apparently, he was motivated to speak his name by the reflection of himself in the mirror.  A reflection he liked.

So, now I must learn how to adjust the mirror in my eyes to reflect who he really is and who he can be.  Because he is watching.  He is listening.  He is learning.

And when he looks at himself through me, I want him to like and be inspired by what he sees.  For, if what he sees in my eyes is not faith in him, how will learn faith in himself?

Pranking Autistic Pre-schoolers and Other Ill-Advised Pursuits

Bronwyn, my 5 year-old, has discovered YouTube.  For the most part, this is a good thing.  She watches kids’ music videos, children’s stories, and monster makeup tutorials made by other kids.  She enjoys these “tatorials” so much that I can hear her “filming” her own videos, speaking directly to her audience as she discusses how to do such things as washing one’s own hair, counting to 100 by 5’s, and so forth.  It’s cute, but I fear she is going to ask me for her own channel soon.  No, she won’t be getting one.

Recently, she asked if she could watch some little girl “pranking” her family members.  The pranks were innocent enough, so I allowed it.  Big mistake.  Now she is stalking our home, lying in wait for some way to prank us all.  (You should have seen her delight when her daddy discovered the salt in his morning cup of coffee.)  Really, it’s been kind of cute watching her tap into her imagination, although we did have to have a discussion about funny vs. mean pranks. 

You probably have guessed where this is going.  Yes, my little stinker wants Callum to join in the fun.  So I explained to her that her little brother probably wasn’t going to appreciate being pranked and that we should all refrain from doing so.  Being a little Choleric, she of course ignored my advice and set about pranking Callum.  It didn’t go well.  He thought it was funny when she jumped out at him from behind a door, but that’s where the hilarity ended.  Hiding his candy, letting the water out of his bathtub, and touching ice to the back of his neck were all spectacular disappointments as well.  (Which earned her repeated trips to time out in her room.)  So I’m going to go out on a limb here and state emphatically that playing practical jokes on autistic preschoolers is ill-advised.  Somebody alert the media. 

I must say that I was impressed with Callum’s handling of it all.  He may not have much language, but he has communication.  And, boy, did he communicate.  He yelled, growled his displeasure, and – understandably for any long-suffering little brother – gave her a little shove.  A clear case of self-defense, so he escaped prosecution. 

True Story – “How a Hog Pen Saved Me from Death”

As for my daughter’s love of practical jokes, I blame my husband.  She inherited it from him – along with his nose, a suspected case of ADHD, and a decidedly grumpy morning demeanor.  (It has been suggested to me by her teachers that I have her tested for gifted.   Let’s just attribute her staggering intellect to me, shall we?)  I’m more like Callum.  I don’t like surprises.  I have sensory issues.  And don’t even think about messing with my food.  Nope, I don’t like being on the receiving end of a practical joke at all, though I confess to having orchestrated a few really good ones.  (The best one nearly got me killed.)

But you know what I love?  The fact that my daughter loves her little brother so much that she constantly tries to find ways to entertain him.  Her solutions – at 5 years-old – leave much to be desired.  But her little spirit is willing, and – for the most part – so is his. 

How I look forward to seeing the trouble these little monsters get into together.  J

 

Siblings are the people we practice on, the people who teach us about fairness and cooperation and kindness and caring, quite often the hard way.

– Pamela Dugdale

 

 

 

When Siblings Have Special Needs

My beautiful Bronwyn.

Our siblings. They resemble us just enough to make all their differences confusing, and no matter what we choose to make of this, we are cast in relation to them our whole lives long. -Susan Scarf Merrell

When my husband and I decided to start our family, I knew one thing right off. I wanted my child to have siblings, and I wanted them to be close in age. Having been an only child myself, I envied my friends’ boisterous households. Say what you want about the benefits of being an only child. But playing with flashlights under bed sheet tents just isn’t as much fun when you’re by yourself. And now that I have mourned alone the passing of my father and am dealing with the declining health of my mother, I have a greater understanding of what a sibling really is.

So, within 11 months of my daughter Bronwyn’s birth, I got pregnant again. When she was 20-months-old, we were blessed with her brother, Callum. Having two babies under the age of two was quite an challenge, but I had all sorts of pre-conceived notions of how close they would be, how well they would play together, and how they would one day have each other when their father and I are no longer here. Visions of little league, dance lessons, scout meetings, and excited Christmas mornings danced in my head. And I briefly enjoyed the illusion that life would be what I had ordered up.

Continued at What to Expect, where I am guest blogging today…

Morning Has Broken: We Have Words

 “There’s something happening here.  What it is ain’t exactly clear…”

-Buffalo Springfield

Progress is deceptive.  When you keep your eyes on the road ahead, the journey seems oh-so-long.  Long enough that you perpetually wonder if you’ll ever reach your intended destination.  It’s only when you stop going and going and stop to look back that you realize the distance you have already traveled.  And, sometimes, that realization is all you need to get a second wind.  To find what seems impossible may be in the cards for you after all. 

Callum started Pre-K ESE in the spring, right after he turned three.  Placing him in that room on the very first day was the scariest thing I’ve ever had to do.  Other parents, teachers, and therapists kept telling me that I would be amazed at what the structure of the classroom would do for him in terms of language and social development.  I don’t think I really believed them.  Not because I don’t have hope for my child.  I do.  It’s just that hope can sometimes be a dangerous thing.  It can let you down.  With a severely developmentally delayed child, you have to walk the nearly invisible line between acceptance for what might be and hope for what could be.  When you do one, you risk denying your child the other — in an endless cycle of “I need to do better”. 

But since returning to school this fall – to the same teacher’s class – we cannot deny that Callum has made progress.  On all fronts. 

A few weeks ago, we began receiving reports of words from school and daycare.  And not just randomly repeated words out of context.  But words Callum knows and made the choice to use.  “Peesa” (pizza), “mi” (milk), “pees” (please), “I sowwy” (I’m sorry), “tantu” (thank you), “goo ja” (good job), “nana” (banana), “come ah” (come on), and more.  It seemed to happen all at once. 

But it hasn’t been just words.  There’s been a kind of strange give and take in our verbal interactions with him — even when he’s just babbling.  His babbling sounds like sentences in a foreign language.  And they have a distinct tone — silly, happy, etc.  The amusing one is when he is displeased.  You can tell you’re in big trouble with that one as he furrows his eyebrows, raises his voice, and emphatically babbles his displeasure.  That one inevitably follows being told that he may not have more chocolate or jump on the couch.  Or both.  The important thing is that he is clearly responding to what we say.  He responds when asked a question and usually when told to do something.  And it’s often like a conversation.  It’s different from before – in some way I can’t exactly qualify.  But everyone sees it.

And then there are the social differences.  His teacher, whom we think the world of, reports that he is understanding and following classroom routines.  He sits in circle time, follows the yellow line when walking, and holds is backpack.  No, he isn’t mastering any academic goals yet.  But social conformity precedes learning.  It’s a foundation on which we can build.

He’s also getting into things more now and starting to get in trouble.  It gets harder each day to look dutifully stern when he gets a naughty twinkle in his eye before attempting yet again to break the rules.  He knows he’s being bad – and he is delighting in that knowledge.

And when he isn’t looking, so are we.

If I had to boil it down to one description, it would be this:  Callum — the boy — is in the room with us more and more, not just his body.  He isn’t playing quite yet, but he has shown more interest in some toys.  He is requesting things other than food (such as bringing us his shoes when he wants to go for a drive).  He is swaying to music on occasion.  And discovering that he can open things and make a mess.

Callum, in short, is emerging from behind the wall of autism. Yes, I know the wall will always be there.  I know it is a part of him.  He will always be different, and he will always slip behind that wall sometimes.  But he is learning that things on our side are kind of cool too.  He is seeking us out and realizing that we will consistently meet his needs — especially if he makes them known to us.

And with this comes a level of wonder you can’t begin to know unless you have a child whose developmental milestones aren’t guaranteed.  Each one met is precious and must be celebrated without the assumption of the next to come.  Living in the moment takes on new meaning when patience becomes a choice over a virtue.

No, nothing this little boy does is taken for granted.  Every word, every interaction, every anything he didn’t do before becomes a blessing.  And that, in itself, is a blessing I could have never anticipated just a few short years ago.

Yes, we have words.  But with that, we have so much more.  We have hope.  And a song in our hearts — whose tune we have sometimes forgotten.

Morning has broken, like the first morning
Blackbird has spoken, like the first bird
Praise for the singing, praise for the morning
Praise for the springing fresh from the Word

Eleanor Farjeon

Breathing Room: On Tiny Houses

Now I know the feeling.

All across the country right now, on morning shows and news sites, the tiny house movement is all the rage.  It’s a cool concept.  Folks sick of chasing the ever-increasing size of the American dream re-evaluate their needs and downsize their homes.  The idea is to take quality materials, some ingenuity and efficiency in design, and construct a home less than 800 square feet or so.  Tiny house proponents point out that a person can own their own home for around $10,000 – give or take a few for size.  Tree hugger types think it’s pretty groovy, as tiny home dwellers reduce their carbon footprints and have to find new and often green ways of doing things. 

I think all this is great.  Really, I do.  At least in theory – and for somebody else.  You see, I happen to know from experience that a tiny house is not for me. 

Four years ago, my family went through some tough times.   We had just had our first child, following an awful pregnancy.  I had hyperemesis my entire pregnancy (and the one that followed).  This meant that I was out of work a lot.  I was hospitalized a couple of times, went through some expensive testing, and still incurred the typical costs of a normal delivery and hospital stay.  My husband was laid off from his job, and money got tight.  When the larger home we were renting became a struggle to afford, we made the decision to move into my very small rental home.  I’d lived in it before – when I was single.  We knew it would be a bit of a sacrifice to downsize from a three bedroom/two bath to a two bedroom/one bath, but we went for it anyway.  We packed up a bunch of our stuff, put it into storage, and moved in.  We intended it to be for a year.  But autism therapy, the economy, and further health problems intervened, and we eventually made the decision to live off of my teacher’s salary alone and put my husband through nursing school.  One year stretched to four. 

Now I do not want to give the impression that I was ungrateful to have a roof over my head.  We knew it was a blessing to have the option to live somewhere rent/mortgage free.  Really.   And it was okay for awhile.  Our daughter was just 5 months old, and she didn’t take up much room then.  That is, until 15 months later when she was ambulatory and her baby brother came along.  By the time he starting walking too, we began to sympathize with sardines.  Tiny house lovers can do and live as they wish.  I’m glad they’re happy, and I know it’s great for some folks.  But I’m here to tell you, less than 800 square feet is not a lot of room for a family of four. 

We tried getting inventive.  We closed in the back part of our car port and created a combination pantry, storage, and communal closet.  We installed floor to ceiling shelves in our bedroom closets.  And we even installed floor to ceiling shelves on one wall in the kids’ room.  We used underbed storage.  Space saver bags.  We even pulled up a trailer bed and decided to de-junk our lives of anything we hadn’t touched in a year.   I kept saying that we just needed to think more like NASA – to think small, outside of the box, and to use every inch of vertical space that we could. 

But I hadn’t considered something that those smart folks at NASA do.  They actually take into consideration the psychological effects of cramming so many people together in a small space.  They know it’s stressful.  They have teams of psychologists who plan for this stuff.  Theorizing what might happen in a similar scenario on futuristic trips to Mars and such.  They don’t underestimate the potential impact.

One would think that it is easier to keep a tiny house clean.  But it’s not.  When everything you have is right there, then everything you have is right there.  Underfoot.  Making you slip, trip, and curse.  Stubbing your toe on every pass.  You open the single medicine cabinet in the house and carefully reach for a bottle in the back – only to have them all come spilling off the shelf.  You attempt to cook dinner and end up being snippy with anyone who dares to enter the kitchen — because there simply isn’t enough room.  You can no longer enjoy the crafts and hobbies you used to, because there is not enough horizontal space to spread them out.  It seems that every time you turn around, somebody is looking for something that cannot be found amidst all the other stuff that has no place to call its home.  The walls close in, tempers rise, and children bounce off the walls.  And you want to be anywhere else.  But going elsewhere always costs money.  The money you didn’t have enough of to begin with. 

But, like every other challenge in life, your circumstances become your reality.  And you just…deal.  We honestly forgot what it was like to have space.  To have room to organize things in a logical and accessible way.  To not be surrounded every minute of every day with everything we owned.  Yes, we were definitely looking forward to my husband graduating nursing school so that we could move.  But I know we didn’t really grasp just how much stress our tiny house was contributing to our lives. 

Until a week ago.  A week ago, we finished remodeling work on my father’s home and moved in.  And it was…heaven.  Everything has a place.  Unsightly things are all tucked away.  And I know where everything is.  Countertops are clear.  The floors are safe to traverse.  My children are basking in the joy of their own spaces.  It’s by no means a large house.  Just a simple three bedroom, two bath home with an open, combined kitchen/dining/living room.  But we have big closets and ample storage.  And we can now actually invite people over to visit.  There is room for them to sit down.  We feel like we can breathe again.  And I am just now realizing how very little air we really had just a couple of weeks ago. 

This house my dad left me is a blessing in so many ways –which is so messed up when I really think about how I got it.  Of course, I know it is what he wanted.  Every parent hopes to leave something to their children.  I just have such mixed feelings sometimes about enjoying it.  But I tell myself that is just likely part of my grieving process and try to enjoy it anyway.  Daddy was a practical man, and he would tell me wallowing in guilt won’t help anything.  I’m trying to keep that in mind.  I’m trying to focus instead on this blessing and the relief it provides to my already over-stressed family.  And I’m mostly just smiling about the obvious delight my children are taking in their new home.  They’re happy. 

So I guess the only thing for me to do is to try to be happy as well.  For I really do believe that happiness is mostly a choice.  But, like every choice, the battle between head and heart is a hard one, now isn’t it?