I plan to be away from my blog for a few days to mourn my father – a man a dear friend so aptly described here:

“My heart is so heavy this morning. A wonderful man has left us. Father to a dear friend and grandfather to her children, as well as a friend of mine, passed away last night. A grand Southern gentleman, an intellectual, a thoughtful and wry wit, and a deeply loved man. The world is less today.”

Disclaimer:  This is a thoroughly depressing, self-absorbed post, written in the ICU.  Read at your own risk.

I’m going to do what I said I didn’t really want to do and write a post about something other than autism. This is not to say that I don’t enjoy writing about other things.  I do and have.  It’s just that I’ve really tried to hold firm to that blogging guideline of defining your blog and sticking to it.  But something has happened that has removed autism from my mental train completely.  And it’s all bottled up inside my head with nowhere to escape but here.

Twelve days ago, I received an anxious call from my father’s secretary.  Apparently, the guy who mows his lawn saw an ambulance carry him away.  Having a terrifying clue what had happened (he had a stroke 10 years ago), I got my husband to drive me to the hospital and found my dad in the emergency department with stroke symptoms.  In short time, a CT scan revealed a very large hemorrhagic stroke.  A LifeFlight chopper was called, and we took off for Shands – where he had been accepted to their NeuroIntensive Care Unit.  I didn’t go further than a hotel a couple of miles up the road for 8 days.  A week into the stroke — though doing amazingly well neurologically — he developed some breathing complications related to just being in the ICU and has been completely sedated and on a ventilator for several days now.  All predictions from his neurosurgical team are that this is sort of par for the course for ICU.  And they have repeatedly stressed how great of shape he is really in – no apparent neurological or cognitive damage.  Most people in his should would be dead or in a coma.  He is very, very lucky.

But it hasn’t been an easy ride.  Each day there is some new test, new tube, or new worry.  First and foremost – pressure on the brain. Then there is a period of danger called a vasospasm window, the time period patients are at risk for what are kind of aftershock strokes.  Blood pressure crisis one day, oxygenation the next.  Fever.  Among several other concerns.  If I hear two steps forward one step back one more time I’ll scream.  But it is all too true and patience is the only option available.

I’ve seen some awful things he has had to endure over the past few days.  I’ve ridden in elevators with entirely too many sick children. I’ve met some very nice folks in the ICU waiting room, shared our stories and family member’s conditions, and seen their heartbreak as they made their final goodbyes.  I’ve been so very sad for them — and so very relieved I wasn’t in their shoes.  Daddy’s condition is, of course, quite serious, but he has apparently escaped permanent damage.  It looks like we will get to take our loved one home.  All of him.

I’ve watched people handle it all so differently as well.  The angry types — who demand entry everywhere and are furious when doctor’s cannot answer the unanswerable.  The dramatic types – who seem to thrive just a bit too much on an unfolding crisis.  The manager types – who talk loudly, take detailed notes while demanding the correct the correct spelling of every name, and attempt to conduct the emergency to their own satisfaction.  The wailers – whom you really should limit visiting the sick person, lest he think he’s dying.  The jokers – who are so uncomfortable with grief they use inappropriate humor in an attempt to deflect it.  And the doers – who immediately begin making contact lists, researching, making plans, signing paperwork, etc., with the express purpose of delaying the inevitable emotional crash sure to follow by just keeping busy.

That’s me.  I’m a doer.  An emotional autopilot.  I know I’m not the only one, as I’ve met others like me.  I’ve been acting as the family spokesperson – complete with a medical update email, investigating hotels, discussing rehab options.  But I’m starting to get the idea that I have a particularly bad case of keeping busy.  Over the past few days, I’ve noticed several people looking at me strangely.  I’m getting the idea that they are wondering what is wrong with me, why I’m not crying, when I’m going to fall apart.  I confess that I am wondering myself.

Because, I really could use a good cry.  The problem is that it is all bottled up in uncertainty.  I keep telling everyone who expresses concern that I will fall apart when it is called for or it’s over and that neither of those apply right now.  From experience, I know the difference.

Five years ago, pancreatic cancer – a cruel and often hopeless disease – robbed me of my stepmother.  A cheerful and devoted mother, grandmother, teacher, and friend, who dearly loved my daddy, was taken from us in just 5 months.  It was without hope from the beginning, and I began silently grieving from the start.  The last days of her life were pure hell – watching such a bright and beloved light fade from our world, leaving us all in devastation of her loss.  I had never known it possible to cry as hard as I did.  To this day, there are sights, sounds, and moments that take me right back to those dark hours.  I’ve never been the same.  There isn’t a single day that I don’t miss her presence and insight – especially now that I have children and a special needs child in particular.  I just know she would have been an amazing support for me and a wonderful grandmother to him.

But this is different.  We’ve got all kinds of hope here.  But all kinds of suffering.  Worries.  Progress and setbacks.  Fear of the unknown.  Steadfast determination to remain positive.  Nagging doubts.  Relief.  Anxiety.  It isn’t grief.  But it’s still a total and overwhelming assault upon one’s emotions.   And deepest of all those emotions is the helplessness of watching someone I love suffer.  It’s like the whole world is in limbo.  (Oh, wait.  Maybe this sounds like dealing with an autism diagnosis for your child after all…)

I feel just like a lost little kid in a big crowd, hoping my daddy will come find me and take me home.

Only I’m a mother now.  I have small children who need my stability – even when I’m not feeling it myself.  My little girl is very aware of how much I’ve been gone and keeps drawing pictures “for you Mama”.  And Callum seems out of sorts as well – a little grumpy and way more snuggly.  (Of course, I have been going home as much as I can and switching off with my step-sister and a couple of others. I swear I’m not abandoning my children.)  My dad, were he not sedated at the moment, would fuss at me to go away and just pick him up from the hospital if he makes it.  But you just can’t do that with the kind of dad who has rightly earned the name Daddy, now can you?  He is, after all, Autism Grandparent of the Year.

So, yes, I’m okay.  At least on the Official Press Release Statement.  In a few weeks, when we get him out of the rehab hospital and back to being himself, I’ll reconsider a nervous breakdown.  Oh, wait.  I have to work for a living, be a wife, be a mother.  Nix the breakdown.  I’ll just have to settle for a visit with my doctor and the possible publication of some whiny blog posts.  Darn those celebrities.  Don’t you envy them their psychiatric options?

A quote about fathers and daughters I love:

“…I’ve made it my business to observe fathers and daughters. And I’ve seen some incredible, beautiful things. Like the little girl who’s not very cute – her teeth are funny, and her hair doesn’t grow right, and she’s got on thick glasses – but her father holds her hand and walks with her like she’s a tiny angel that no one can touch. He gives her the best gift a woman can get in this world: protection. And the little girl learns to trust the man in her life. And all the things that the world expects from women – to be beautiful, to soothe the troubled spirit, heal the sick, care for the dying, send the greeting card, bake the cake – all of those things become the way we pay the father back for protecting us…” 
― Adriana Trigiani, Big Stone Gap

Update:  The day following this posting, my father suffered a second, more devastating stroke.  He passed away peacefully.

But I have seen the pain in the eyes of my students on the spectrum.  As a teacher, I have witnessed the aftermath of your peers’ indifference, amusement at your social missteps, and even cruelty.  I have watched you try so hard to fit in to a world that doesn’t understand you any more than you struggle to understand them.

You try to make small talk, but it isn’t received as you intended.  You share your opinion in class, and are bewildered by their laughter.  Even some of the teachers and other adult staff sometimes seem annoyed.  There are all kinds of unwritten rules about what to say, what to do, how to look — and no matter how hard you try to get it right, you always seem to get it wrong.  The thing that people don’t seem to realize is that – inside – you are just a person who wants the same things everyone else does.  Friendship.  Respect.  Fun.  To share your interests and experiences with others.  Perhaps to meet someone special.

But right now I’m guessing you don’t have many of those things.  And you’re probably wondering if life is always going to be this hard.  If there will ever be a place you belong.  If you will ever be able to sit among a group of people without a running dialogue of worry, embarrassment, and checklists of those unspoken rules running through your head.

Clearly, you want to be “normal”.

Well, I just so happen to be someone you would consider “normal”.  (Whatever that is.  I’m here to tell you that I’ve known a lot of “normal” people.  Quite frankly, we’re all us strange – this mixed bag of humanity.)  But I make friends easily.  I understand those confusing social cues that seem to elude you.  And I have never lived in daily fear of being bullied and antagonized.  So, no, I have not lived your life, and I don’t know what it is like to be you.

But being what those in the autism world call neurotypical, I have made my own observations of the differences between people on the spectrum and people like myself.  One of the things autistic people are characterized by is having an affinity for detail.  Many of you notice so many things that neurotypicals never will.  It’s a really cool ability.  We NTs, on the other hand, aren’t as observant.  We tend to be blind to those who are different.  And, even when they are pointed out, many of us still fail to really see them.  A kind of emotional blindness, if you will.  And, it really is not intentional.  It’s just that it sometimes takes an extraordinary experience – such as parenting, loving, knowing, teaching, or working with someone on the spectrum for our eyes to be opened.  But without that experience, far too many of us remain blind to those right in front of them – their differences, what they share in common, what they need to navigate the world just a bit easier, and what they have to contribute to our world.

Yet some of us have had that extraordinary experience.  Some of us now have a new set of glasses with which to see the world.  As one who counts herself among them, I am so very grateful for that.

I’m so sorry that so many of us still have not had our eyes opened.  I’m sorry for the frustration and hurt that we have caused you – that would make you wish you were somebody other than who you are.  Yes, you do stand out.  But you know what?  So do some stars.  Some are just brighter, more colorful, and more interesting than all the other not-so-remarkable stars in the universe.  When I think of you, of others I have known like you — and my precious amazing boy, also autistic – I see stars.  And to me, and other NTs like me – whose vision has been strengthened – you are beautiful.

Right now, you may be looking around you and wondering where the heck we all are.  Are there people who will accept and appreciate you?  And are there others like you who have gone on to happy and fulfilling lives, having survived the very difficult years you are enduring right now?

The answer, I am so very pleased to tell you, is yes.  We are all over.  We are in this country and others.  We are in large cities and small towns.  We are universities and the workplace.  Churches and advocacy organizations.  And you may be too young to have an opportunity to break away from your small corner of the world to meet us all.  But we are here.  And we have our hearts, minds, and arms open and waiting for you.  As the saying goes, “It gets better.”  You just need to hang in a bit longer, learn as much as you can, and then step out into the world and begin bridging those connections.

In the meantime, you may be surprised to know that there is an entire online community and autism/Aspergers blogosphere already available to you.  Autistic/Aspie youth and adults, sympathetic NTs, and experts.  Websites, blogs, chat rooms, forums, support groups, Twitter, Facebook pages, and much more.  You would be surprised at the warmth, friendship, and understanding available right now — today — if you will just log on and seek it out.

For more messages of hope to you from the autism blogosphere, please visit the Autism Positivity Flash Blog.

It’s a big world out there.  And you haven’t even seen 1% of it.  There are happy and successful people just like you who are all too happy to tell you that there is a lot to look forward to in life.  Seek them out.  Connect to them.  Follow their advice.  And, hopefully, one day you will be in their shoes — proving to a young person just like yourself that there really is a place for him/her in the world.

For it is there — waiting for you to claim it.

If you would like to read more messages of hope from people in the autism community, please visit the Autism Positivity 2012 Flash Blog.

Speaking for myself, I don’t think autism positivity is about denying the very real challenges being autistic or raising a child with autism presents.  If it were, then I’m afraid I would have to side with those who are against it.  The cold hard truth about autism is that each person affected by it is dealt a different set of cards.  And some of those cards are poor hands indeed.  What I mean by that is that life is certainly going to be easier for those who can communicate with others.  It is obviously going to be more pleasant for those whose sensory issues do not overtake them in a vicious assault every time they leave the house.  Of course it is preferable to be toilet trained than not, to be able to read than not, and to have the ability to make your own choices.  Yes, I want those things for my child.  I’d be crazy not to.  Yes, I am terrified he might not.  Because not having the freedom to direct your own life is a loss – and one I would have every right to grieve.  Without some sanctimonious autism cheerleader telling me how very happy I should be about it.

Which brings me back to my point.  Autism positivity is not a vast conspiracy to make everybody autistic.  It is not an attempt to discourage therapies that might improve the quality of lives affected by autism.  And it is not a movement to create guilt in parents who are struggling with very real issues related to the most severe cases of autism.

Yes, some of the hands dealt by autism have been tough.  But not all of them.  We call it a spectrum for a reason.  There are a very large number of people on that spectrum whose lives are fulfilling and happy.  People who have learned to navigate the neurotypical world.  Children, students, parents, spouses, coworkers, teachers, family, and community members.  People whose very unique perspectives and talents have contributed to our world.  And even some extraordinary minds who have helped to make it a better and more beautiful place – scientists, artists, engineers, and other great thinkers.

And here’s the thing. Those folks have to walk around hearing about epidemics, cures, gene therapy, social dysfunction, and disappointed parents.  They have to endure public discussions on their sexuality (or lack thereof) and answer personal questions on whether or not they understand the concept of love.  They know that perception of autism runs from people equating it with mental retardation to thinking it a “soft” condition that doesn’t even exist.  And the only people representing them on TV are geniuses or superheroes.  Given those roles from which to choose and identify with, can you blame them for wanting to present their own view of autism?  To want to shout from the rooftop that they are proud of who they are?  That they like themselves just fine?  That it is okay to find humor in their differences and to enjoy some of the perks of being autistic?  For there are perks.  And they have a right to like those perks.  They have a right to like themselves.  They have a right to not feel like a walking tragedy.   And they have a right to demand the world not treat them like one.

I joined the Autism Positivity 2012 Flash Blog Event because I want to send a message to the young people who are still fighting in the trenches of acceptance.  Those kids who get up every day and battle loud, smelly, crowded hallways just to get to classrooms filled with students and teachers who don’t understand their differences and don’t appreciate their contributions.  I have seen those tears throughout my years of teaching.  I have hid them in back rooms of the library to cool off tear-stained faces with cold cloths.  Kids whose peers, teachers, and even family don’t begin to understand how very brave and tough they have to be to function in what is a daily battlefield for them.  All while being told that there is something terribly wrong with them.

Yet I don’t even know if my child will be “high functioning” enough to even have this to look forward to.  I hope.  And, yes, I pray.  But his cards are still face down on the table.

No, I am not in denial.  I have seen severe autism.  It is still way too early to know what choices my son will have available to him.  But even if the dreams I have for him are not realized, I refuse to not take joy in what I have in him.  I refuse to not be amazed by the wonders of his mind.  I refuse to allow my own grief –which I confess to experiencing every day – to cast a shadow on his love for life and his pride in himself.  Every human being on the planet deserves to be celebrated and cherished – not matter what challenges they face.

For I know that the roots of his self-worth are reflected in my eyes.  Mine.  And, no matter what, I want him to like what he sees.

If you would like to participate in the #AutismPostivity2012 Flash Blog Event, please visit our page.  You don’t even have to be a blogger! 

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog.  We do know the searcher clicked on it in an attempt to find what they needed.  And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking.  What would we say to that person?  What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance?  What if it were a person who might never stumble across the amazing voices speaking for autism acceptance?  What if that person thought himself/herself all alone?  What would we say about the present?  What would we say about the future?  What would we say about happiness?  And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for “I Wish I Didn’t Have Aspergers”.  But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

We are asking every blogger in the autism community to write a message of positivity to “I Wish I Didn’t Have Aspergers”.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

And – for those of you who do not blog but wish to join in – please post your positivity message to http://autismpositivity.wordpress.com

Please join with us on the last day of Autism Awareness/Acceptance Month – April 30^th – in a flash blog of autism positivity.

To participate:

1. Publish your post on April 30^th in the following title format:  “[Your Blog] to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012”.
2. Share your post on Twitter and Facebook, using that hashtag.
3. Add your link to the Autism Positivity website and grab the badge:
4. Share/reblog this message to your blog, page, etc.

This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue.  We are:  30 Days of Autism, Outrunning the Storm, The Third Glance, Aspie Kid, Flappiness Is, Quirky and Laughing, Life on the Spectrum, Fairy Tale Forgotten, The Aspie Side of Life, and Inner Aspie.

Last year, a Facebook acquaintance ambushed me at a retirement party and suggested that I pursue real writing rather than concentrating my creative energies on Facebook statuses.  Appealing to my vanity, he told me I had a “distinctive voice”.  Yeah…you know I just ate that up.  But after years of uninspired resume, application letter, and obituary writing for friends and family, it occurred to me that I needed an outlet.   I had tried blogging before, but it lacked a focus and I soon abandoned it.

In the spirit of “writing what you know”, I went and looked up autism parenting blogs.  I found Babble’s top autism blogs, checked out a few, and found that I suddenly had a lot to say.  And realized with chagrin that I had been saying it, but to people who weren’t particularly invested (friends and family not directly affected by autism).  I had been blabbering away about my experience without a willing audience and needed to give my poor friends a break.  After reading a few blogging tips, brainstorming a name, and creating Twitter and Facebook accounts to find some readers, I created an account on WordPress, wrote my first post, and timidly entered the autism blogosphere.  My goal was simple.  I wanted to build up a readership of about 75-100 people (similar to a friend of mine’s beer blog) and meet real people who have been in my shoes and were willing to talk autism.

Imagine my surprise – and I confess my delight – when, after four days of blogging, my “Apology” post took off.  Not like those hilarious treadmill blooper videos, mind you – they’re totally awesome.   But 56,000 hits in a single day.  Which, for a four-day old niche blog, is pretty viral.  A couple of weeks after that, “Dear Shopper” took off as well.  And, in almost surreal timing, the following day “11 Things” was “Freshly Pressed” on the WordPress.com homepage.

Suffice it to say, it was a most extraordinary experience for a newbie blogger.  Suddenly I had hundreds of comments and emails—encouraging me, sharing their own stories, wanting me to guest post, asking my opinion, or offering me an “opportunity” to sell their product.   Yep, my Warhol-allocated 15 minutes was something else.  Now that they’re over, I am relieved.  Statistically, it is unlikely I’ll get any more.  And mine were a good 15 minutes – unlike those unfortunate souls whose minutes came while dangling on a ski lift with their pants down.  One really must practice gratitude when one can.

Had that hindsight been present, I would have spent more time thinking about the implications of blogging than social networking or a name for my blog.  And I would have changed my name – not merely going by my maiden name, but changing it altogether.

You see, I’m in a very fine pickle indeed – of my own making – and there’s really nothing that can be done about it.    Well, I could dramatically post a notice from a relative that I had been hit on the head by an asteroid, but that would make me unhappy.  I happen to like blogging.  I love interacting with this community of parents – who understand the value of support so much as to offer it to strangers they will likely never lay eyes upon.  Every parent would walk through fire for their children.  But you guys-along with every parent of every child who has been vulnerable in an unforgiving world – have actually all gotten the call to suit up. We come from all walks of life, but we share this one thing in common.  Nope, I’m not giving it up.

But going by my own identity was probably a less than stellar idea.  Some might think I’m saying that due to the sinister nature of the internet.   They’d be wrong.  Because it isn’t that I don’t want any of you to have my name, it’s that I wish everyone I knew in real life didn’t!  In a large enough city, it wouldn’t be a problem.

But I live in a small one.  We have one high school.  I personally know all of our local candidates for superintendent. Almost all of our school level administrators were born and raised in this county.  And, having been employed here for 15 years, I have taught with, trained with, worked for, or attended high school with most of them.  You don’t have to play six degrees in this town.  Usually two will suffice.

My point is this:  the day will come when we have a concern or complaint.  It just will.  (And I am one of the least rock the boat natured women you’ll ever meet.)

And I will have to think about whether or not this teacher or that therapist or which administrator is related to somebody else and whether it might be a problem. We have awesome people in my school system, and I do have faith that most of my colleagues want the best for every child.  But if you work for the same people you might one day have to petition, you’d be a fool to be unaware.

All this would be bad enough for any special needs parent, but then I had to go and start blogging – using my real name.  It wasn’t that it was a secret really.  My friends and family knew. I just wasn’t making an effort to promote it to whole city.   But someone saw “Apology” on the Autism Speaks site and it got out.  Now some folks are interested and asking me about it.  Which is certainly no big deal.  But at some point, someone who works with him will see it as well.  And, considering how careful and sensitive teachers of special needs kids already have to be, imagine how thrilled they would be to hear the mom in the IEP is an autism blogger.  Add to that the abundance of lawyers in my family, and I’ll be surprised if meetings with me aren’t recorded and legally represented!

In short, there are many opportunities here to royally infuriate someone with the power to make my life miserable.  And, yes, I know the First Amendment (barring stupidity or slander) will protect me.  But that isn’t really the point, is it?  I have to live and work in this town.  I happen to like most of these people.   I need my job.  But, most importantly, I don’t want anyone resenting or avoiding my child because they fear I might go and raise a stink on my blog.  I’m not going to do that to anyone who works with my child period.  But I wouldn’t blame them for being a little leery about it.

If I had blogged about, say, stamp collecting, it would have been alright.   If that one post hadn’t taken off, it would have been okay.  But the internet is an unpredictable thing.  And I have recently learned it is a very small world after all.

So here I am, blogging away while attempting to analyze every possible consequence of each post.  Who might read this?  How might they interpret it?  Does it suggest anyone’s identity?  Will a family member or friend be inadvertently offended or affected?  Might the school system see this as criticism?  And – if I attempt to minimize negative ramifications – am I remaining true to me?  Censoring myself is hardly therapeutic.

So, yes, I’m going to continue what I’m doing.  (Mainly because I’m lazy and all other autism advocacy seems to involve running several miles in unflattering clothing.)  I’m still going to talk about what I need to talk about or say what I think needs to be said.  I’m simply going to continue to look very carefully at how I say it.

No, I didn’t think about any of this beforehand, and I should have.  So those of you who are thinking about writing your own blog, be forewarned.  You really have only three options when blogging: use a nom de plume, write pure fluff that will offend no one, or grow thicker skin.  The first two options won’t work for me.  So I’m working on that third one.  While repeatedly looking over my shoulder.  And maintaining possibly the largest unpublished drafts folder in the history of blogging.

Sometimes I am not so smart.  :/

“I always feel like somebody’s watchin me and I got no privacy. Oh oh oh…”  

-Rockwell

But then I got to thinking about the copy I have.  And, being a librarian, I’m all about sharing the love when it comes to books.  So, I drew again.  And, if he doesn’t mind a copy with a few bent page corners (Please don’t turn me in to the Librarian Police.  They’re sure to be tougher on one of their own.) , that copy will go to:  Jim Reeve!

I’ll be emailing you both to get your addresses.  :)

-Stephanie Lubiani Wilkinson (on depression in parents of special needs children)

I think I said I was just tired.

But one of them looked a little more and asked again.  And I could tell she was really seeing what I was trying hard to not reveal.  She herself has lived years of worry and grief for her own child – for different reasons, but the effect is much the same.  She didn’t put what she saw into words, but I knew what words they would be.

There is an expression that can be seen sometimes in the eyes of parents of special needs children, parents whose children are drug addicted, and parents whose children have died.  In short, any parent whose dreams for their children have been significantly altered or ended.  I think you can’t fully see it – every nuance – until you are able to recognize it in yourself.   It’s not even there most of the time.  But, some days you look and it’s there again.  And it isn’t a look of anguish – as some might expect.  No, it’s a look of…nothing.

Today I feel like a walking place holder.  My body goes to work, but not my enthusiasm.  I eat the food.  But I’m not really hungry.  I laugh at people’s jokes, but I’m not sure that they are funny.  I smile at my children’s antics, but I am somewhere else.  And, because I don’t know where that is, I can’t seem to call myself back.

It’s funny how differently people handle a crisis.  There are some who fall apart during the crisis.  They rage and hurt and grieve — and then accept it and move on.  I’m of the opinion those folks fare best.  There are those who disappear.  They can’t handle it and never do — never realizing that stopping and taking a good look at what’s following them is the cure for what haunts them.  And then there are the autopilots.  They announce the crisis, put together a crisis team, make a plan, and oversee its implementation.  These folks appear to be doing wonderfully — and lots of folks congratulate them for their strength.  I’m one of those.

The problem, of course, is when the immediate crisis is over.  The support team is no longer on red alert.  Others think they are fine.  And those seemingly limitless  reserves of adrenaline are now empty.

That’s how I feel right now.  Empty.  Numb.

It seemed like I was working toward some very specific things this school year – Callum starting daycare, increasing therapy, his turning three and getting a diagnosis, his entering public school, the IEP, etc.  And, suddenly, all of those things have passed.  I gotta tell you –it feels a little anticlimactic.

Perhaps it is simply the realization that there is no finish line.  It’s the long haul.  And my tank – at least today – is empty.  Heck, it’s so empty I don’t even have the energy to try to fill it back up.  I’m just plain tuckered out mentally.  Content to sit in my stranded state and look at all the people passing by.

But the thing about motherhood is that I don’t have the option of doing that for long.  Melancholy is so much easier to wallow in before you have two little souls depending on you.  And I’m realizing that there is only so much longer I can go before middle of the night insomnia is going to take me down.

So I’m giving myself two weeks.  If I haven’t shaken this off in two weeks, I’m going to see the doctor.  I think I’m also going to try to get away for a day or two by myself.  To sit in a hammock, read a book, and stop this incessant …thinking.

For I have allowed all my worries — the what-ifs, the what-will-bes, the attempts to explain, and the guilt of not being able to be everything that my son needs– to stir up a cacophony in my mind , in endless repeating cycles, that are now attacking because everything I was previously so focused upon has come to be.  And yet little has changed.

If I were a computer, I’d give myself a hard reboot.

I’ll be okay.  Because I have to be okay.  Because these sweet little babies I love require me to be so.  The trick, I guess, is to figure out how long you can sit back and decompress before you begin to atrophy.   Before melancholy is no longer just an unwelcome visitor continuing to knock on your door — but one whom you invite to come inside and sit down a spell…before never leaving.

And to remember that all of these feelings, thoughts, and worries are not to be given permission to steal my joy.  I am very aware that I am blessed and very grateful for this sweet little boy whose future I keep obsessing over.  He is not the cause of this melancholy.  That’s me.  My head.  My giving in to fear.

And there is nothing to do but work it out.  To stand up and begin going through the motions — until, like walking, mental muscle memory takes over and every little thing  isn’t a major effort.

This journey?  No, it’s definitely not for sissies.   But that’s okay.  I’m tougher than I look, and I’m stronger than I feel.

And I’m not opening that door.

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” 

-Kahil Gibran