To say that my world has been turned upside down would be a bit of an exaggeration…..more like it has been given a mild shake. A tremor. But that tiny tremor has sent out a constant stream of ripples, causing major disruption. I suppose, as with anyone on the autism spectrum, disruption is easy to come by. It doesn’t take much. Coping skills that take years to develop can slip out of reach, leaving me frustrated, watching myself falter.

This particular period of disorder has caused me to do a lot of withdrawing. I want nothing more than to sit quietly and listen to music. I am constantly agitated. Stims that I have beaten into submission unless I am alone are protesting loudly at being ignored. I would gladly sit in my chair all day and speak to no one. Of course that is not really an option when I have a family. Kids that need me. Homeschooling to do. Work to do. A husband that would probably like a wife that actually could have a conversation or two. This has brought up some interesting things for me. I know how difficult it is to live with my son at times, due to his Asperger’s……but it has become painfully clear how difficult it can be to live with me, due to my Asperger’s. Would seem like a no-brainer, but I had become so comfortable in the skills that I had “mastered” that I assumed that others around me were as comfortable. And usually, they are. But not always.

A few things have happened lately that have reminded me that no matter how hard I work, I am still different. That is just the way it is. I say it all of the time in regards to my son….that I can not expect things to be easy or “normal” because they are not……and yet it was a bit humbling to have to apply it to myself. But different doesn’t mean lesser…it just means different. I just have to continue learning to live in that difference. Make it my own. But sometimes it is easier said than done. Sometimes being different is a bitch…….And a lot of times it makes people think I am a bitch because they misunderstand why I act certain ways. That is a rough one. No one likes to be misunderstood. It has been a hard lesson for me to follow the advice I give to my son…..if they don’t bother to try to understand you, then they are not worth your time and effort. I have been blessed to have people come into my life that take that time. When I am reeling from experiences with those that don’t, I am so thankful to have them to turn to. But sometimes I just have a mess that I have to work my way through on my own. Tricky shit, this autism thing. Or maybe, perhaps more accurately, it’s all of the damn “normal” that is so tricky.

The Girl has a friend over. They sit in a nest of pillows, giggling, singing, whispering. They eat Cheez-its out of the box nestled between them and talk about being rock stars. And I can see them from my chair, dancing, cartwheeling, and I can hear the laughter. And I am thankful for this one bit of normal in my daughter’s life. Then my son, peeks his head down from upstairs and makes a funny noise at the two girls, and they all dissolve into loud belly laughter. And I am thankful for the one bit of normal in his life. Normal brother-sister interactions that most people would never give a second thought make me stop and exhale.

The Girl doesn’t get to see a whole lot of normal behavior from her brother. She sees the yelling, and the anxiety, she feels the sting of his words, she sees me cry. She knows to come whisper it into my ear if her stomach hurts, so that her brother does not hear and start to panic. She learned this at 5 years old. She runs and sobs when he has his meltdowns, and takes the brunt of his criticism. She sits alone quietly in the waiting room of the psychiatrist’s office each week. And yet, she sticks up for him when he is being lectured and would give anything to be granted access to his room, or asked to watch him play PS3. Then she will break down…”Mom, I just don’t want him as a brother anymore. It is too hard. I just don’t want to live with him anymore. It is not fair. I just want a normal brother!I hate his Asperger’s!”  And who can blame her? It is not easy, I know. And she is so kind and so easily wounded. And I worry every day that she will be broken somehow, between her brother and myself. That she will look back on her childhood, and these moments of “normal” will stand out to her as much as they do to me, because they are so rare. With all of my own fumbling through, can I help her to deal with her brother? I know I have to try.

She has asked for her friend to spend the night this Friday. There is nothing about that that says fun to me. I get all anxious when people are in my house, and I don’t like my routine messed with. I will worry about keeping The Boy from doing anything that could scare The Girl’s friend. Calm, please. Please no meltdowns. But I will make popcorn, and watch their dance routines, and let them eat ice cream at midnight. I will let them stay up late and only shush them a little. I will step outside myself, and I will give The Girl her normal….one sleepover at a time. She deserves that.

The Boy turned thirteen this month. Thirteen. And any time that I was able to spend, sitting, turning the fact that I was the mother of a teenager over in my head, was short-lived. Parenting The Boy does not leave one with much time or energy for thoughtful introspection lately. In fact, it doesn’t leave much energy for anything. I find myself, at the end of the day, feeling like I have gone twelve full rounds with a heavyweight. Weary, bruised, defeated. While parenting him has always been difficult, at least I understood him. As it stands now, I have no idea what he is thinking or feeling or how to help him. He has this anger and self-loathing that can bring me to tears. What has happened to my baby? The meltdowns, that plagued our days when he was much younger, are back again, only with the size and anguish of a thirteen year old behind them.

Every rough day we had in the past, I would tell myself, tomorrow is a new day, a new start. He is young, we can move on from this, and he will hardly remember how badly you’ve fucked this up. But I realized that I am thirteen years into those new tomorrows, and still failing miserably. Only now, each failing is filed away, and held against me, becoming a new brick in the wall he is building around himself. In his hardest times, he always cried for me…..and now, in the darkest times,  “just go away!” or “leave me alone!”  has replaced his calling for help. The autistic indifference that has grown familiar, has been replaced with angry words and hostility. And that makes it that much more difficult to make it through the day. It just does. Yes, I am a parent, and should have the bottomless, selfless ability to raise and love my child, and expect nothing in return…..and I do, as much as a human being can… But…I’ll be honest, it stings. And makes waking up to face another day of it that much more difficult. I never got the hugs, or the I love you’s, or the pictures drawn for me, and I was ok with that…..but the staying awake until 7 am with him for 8 months, the screaming, the meltdowns, and the constant battles….they become a little rougher to push through, when you are greeted by nothing but a confused, misplaced anger.

And I don’t know how to help him. And that is heart breaking. Experts that throw out pills and scary words have only gotten us so far. He is a boy, after all, and not a diagnosis. His brain is real and is his own, and not just words in some psychiatric text book. And his heart is real, too. Who will help heal that? And how does such a small boy get so very broken inside? You hear all of the time, parents say that all they want for their children, in life, is to be happy. And they usually mean they will be happy with them going to community college, rather than medical school….or choosing to marry someone the parents may not have chosen for them……But I wonder…….How many parents really, truly can say they mean nothing more than to have their child find some peace from tempest that swirls within them? Where are those parents? The ones that stumble, dazed, though the days, trying to make a way for a child that has no idea how to make a way for themselves, and faces so many obstacles, that the journey can exhaust them before they even begin? I know they are out there, and that both comforts me and crushes me, as I would not wish this on anyone. There has to be someone standing on the other side, though, right? Someone that has been through hell and back, and can say, “Look! We did it. It can be done. Yes, it is going to suck getting here, but it can be done. Just put your head down and keep going.” They have to exist, right? I know they do. I have to remind myself of that. Just like I need to remind myself that someday, The Boy and I are going to be standing right there with them, saying, “Look! We did it.” I have to believe that.

“Am I perpetually unhappy, or am I perpetually inspired?”

So, I read that on this blog the other day, and it kind of stopped me in my tracks. Those words pretty much summed up a question I have been asking myself for as long as I can remember. I certainly don’t feel like I live a life devoid of happiness….but I know I am in a perpetual state of discontent. It has taken me a long time to realize that that can be an okay thing. I mean, if I were all happy and satisfied all of the time, would I have any drive to explore new options, create new things, reinvent myself, or pursue a new dream? Would I even have any big dreams?  Over the course of my adult life, I have started more projects than I can count…including making jewelry, trying my hand at writing, and, of course, photography. In a lot of cases, I have fallen flat on my face, but something keeps me coming up with new big ideas that I just have to try. And I have managed to pick up quite a few things that I enjoy doing along the way, which is a cause for happiness, not unhappiness, right? But I would be lying if I said that my bouts of creativity and inspiration do not coincide with periods that I feel…well…bad. Any time that I am stressed, or anxious, or depressed, or overwhelmed….those are the times I feel most compelled to create something. The work I create during those times is also usually the work I am most pleased with. I am not sure that emotional turmoil is a requirement for creativity, but I imagine it is no coincidence that art and madness are so often linked. Van Gogh, anyone? And while I don’t plan on chopping off my ear, or any other body part, for that matter…..I know that with all that I have been struggling with lately, my hands have been itching to pick up my camera. (Do they make an ointment for that?) (and while we are on the subject, how gross of a word is “ointment”? I hate that word. Oint. Ment. Bleh.) So, while I spend my fair share of time in the shadows, I am not sure I would trade away the desire to create, for a life of living in the sun. Oh man, how pretentious does that sound? But, for right now at least, it is true for me. And my camera is calling.

The paradox in all of this? I was watching a show about an 11 year old boy being diagnosed with Asperger’s. His parents took the news like they were told he had some fatal, incurable disease…and I got angry. Because as difficult as times may be right now…as difficult as they have always been…..it bothers me to see someone view autism that way. Their son was no different by the uttering of those words by the doctor. He had the same struggles and the same strengths. He had the same mind and the same soul. Nothing changed in him. I know now, that the day I got the diagnosis that my son had Asperger’s was an Ah ha! moment. Nothing more. A name for the difficulties and the differences that had always been there. And there are difficulties. I am not going to even try to deny that. But….while climbing the mountain with a heavier pack may make for a more trying journey, it does nothing to spoil the view. In fact, bending under the the weight of the load may allow you a unique perspective that others will never see.

“To be nobody but yourself in a world that’s doing its best to make you somebody else, is to fight the hardest battle you are ever going to fight. Never stop fighting.”
e. e. cummings

Depleted. Weary. Consumed. Worn out. Strained.

Yeah. I went to the thesaurus for this one. Saying I am tired just seemed like a joke. The Boy has been going through another incredibly rough patch. Neither of us have slept much in the last few weeks. It is not surprising to me at all, that sleep deprivation is used as a form of torture.  The Boy’s nights are filled with anxiety and fear. We are awake until nearly dawn. And durig the days? As far as Asperger’s is considered, both for me, and for The Boy, no sleep = no coping skills. All that we have worked to teach ourselves to get us through a day move farther and farther out of our reach with each sleepless night.

I am awake all night, and want nothing more than to sleep all day, but there is The Girl to consider. I was setting my alarm to make sure I was awake for her, but as the sleepless nights dragged on, I began sleeping through my alarm. How many hours can she sit alone? How do I balance her needs? My son’s needs? My own? At this point, we are just in survival mode, with the attention going to the proverbial squeakiest wheel.

I have gotten to the point where I am barely functional….well, at least nowhere near as functional as I once was. My entire store of energy is spent just on the basics…. grooming, kid maintenance, their school, and trying to keep my head above water with my business. And most definitely not all of them on the same day. I thought that it was depression. But, in all of my experience with depression before, I never remembered it being quite this way. I decided it must just be a really rough patch of depression. But that didn’t feel right either. Then it hit me….exhaustion. I am just plain, freaking tired. And not even in the glamorous, celebrity-working-too-hard-on-shooting-a-feature-film-on-location sort or way. Just in a life is currently kicking my ass sort of way. And I realized that something had to give. After months of researching and considering and stressing and praying and crying and cursing…I have made an appointment to see about getting some medication for my son.

I feel both relief and apprehension at the thought of this. But the one thing I also feel, which is the thing that really matters, is peace. I don’t know whether choosing to seek out medication will be a light at the end of a tunnel for us, or the entrance to a brand new one, but I know that it is the right time for us to find out. From my own experience, I know that The Boy’s life very well may be a series of tunnels, but it is my hope that medication will turn out to be another tool that he may use to help light his way.

The other night was a rough one with my daughter. She was moody, obstinate, whiny, and just no fun to deal with at all.  It was late….it was bedtime..and I had had enough. I got crabby and frustrated and snapped at her…she snapped back. I was beyond done. I yelled. She yelled back. I could feel my blood pressure rising. “What the hell is wrong with her???,” I thought. I spun around to look at her and saw that exact same thought mirrored back to me on her face-  What the hell is wrong with her??? And it stopped me in my tracks. It suddenly struck me that she is her own person…..with her own mind….and that mind can quite possibly think I am unfair and don’t understand her. And she may be right sometimes. It doesn’t take much of a stretch for me to remember feeling that way myself. Looking at my mom, angry and frustrated, thinking….she just doesn’t get it.

I sighed, and sat down. And I was quiet. And she was quiet. I have no idea what was going through her head as we sat. And I have no idea why it was such an epiphany for me that she could be thinking her own thoughts about what had just happened, apart from mine. I mean, it wasn’t as if I had never realized that before…just…maybe not in the same way…..or with the same clarity. And then, her, “I’m sorry,” broke the silence. I told her I was sorry too. And she crawled onto my lap and put her arms around my neck. We let out a sigh together. A meeting of the minds. A few minutes later, we sat at the table, sharing a blueberry bagel and applesauce, her face still red and splotchy from tears, and I was so thankful for that moment. I was thankful for turning and seeing her face when we fought….I was thankful for that bagel……I was thankful for it all. (Okay, so I would have been a little more thankful if we could have shared our special moment over ice cream instead of a bagel, but I made it work.)  And I am so thankful for that moody, stubborn, intelligent, funny, drama-filled little girl that probably is going to spend most of her life thinking I am completely wrong. She is a force to be reckoned with, and is going to grow up to give the world a swift kick in the ass and me a run for my money….and I wouldn’t have her any other way.

Today was one of those days that I wanted to run screaming out my front door.  Hair flying wild, eyes flashing, I would run down the street and just keep going. No clue where I would go…just…….away. Somewhere quiet. Really quiet. With wifi. Always wifi. This was not one of those typical mommy, “Calgon take me away” type moments either. I didn’t want some stupid bubble bath, I wanted the damn witness relocation program. I wanted someone to hand me a new life in a box. Here you go, ma’am, you are now a freelance photographer in Bangor, Maine. You paint watercolors in the park, have an extensive library of books, and time to read them, and your housekeeper comes in on Mondays. Now, that is what I am talking about. Can you even imagine? I don’t even think my brain remembers what it is like to complete a whole thought. In fact, if I did get some peace and quiet, it would probably still only string a few scattered fragments together and then sputter to a stop, waiting for me to tell someone where to find a pencil, or to screech, “stop teasing the cats!!!!!”  There are just some days where I can feel my brain cowering in the corner, twitching. Days that I find myself sitting on a pile of dirty laundry in my closet just to have five minutes. It’s not quite as sad as it sounds, it is a walk-in..but still. Shit. I am hiding sitting in a closet, dude. What is wrong with this picture?And while my children are….completely nuts… insane…. challenging….. I know it is not really their fault that I am driven to laundry sitting. Not entirely anyway. I was not cut out for this mothering thing. I always knew that. I was an only child, never babysat, never even played with kids my own age. I was positive I was never going to be having any kids. Isn’t it funny how things work out? Ahem.

It’s not so much that I hate kids. I don’t. It’s  just…..Kids are like the ultimate assault on the senses. They are loud. They are sticky. They are needy. They have no respect for personal space or privacy. They transport germs like the rats during the plague. Basically, they are my Kryptonite. It doesn’t help matters any that I have about the maturity level of a 4th grader, and probably even less drive and discipline, and being a parent seems to require large amounts of all of that. Which is totally lame and inconvenient. So, just like going into any job lacking the necessary job skills can make things a bit of a struggle….I tend to struggle through many aspects of this mom gig. And then I sit in the closet. Or fantasize about running away to a different life. One with wine tastings and a house that stays clean for more than five minutes. See, now I could end this by saying something like…and that is when my daughter runs up to hug me and show me a song that she has written, and I realize that it is all worth it. But that would be bull shit. And I refuse to do that. What I will say is this….When something like that does happen…when my daughter makes me breakfast in bed, or my son emails me pictures he thinks are funny……it allows me to keep trying. It allows me the strength to stand up and walk out of the closet. That’s it. No magic transformations. No chorus of angels. Just standing again. And this has nothing to do with my love for my kids. If being a good parent were based on love alone, I would be golden, because I love those two little freaks like crazy. But we all know love doesn’t keep you from having to do the grunt work…so until then….I’m not living anywhere that doesn’t have a decent sized closet.

This weekend, I finally got the tattoo I have been waiting to get for over 2 years, but haven’t quite been able to make it work. The kids are always needing things…like food, and water, and electricity…..can you believe that? So selfish. So body art just was never at the top of the priority list. But…it was for my birthday…so I was finally able to make it happen.

I decided to get it right after my step dad died. It was an experience that derailed my way of looking at a lot of things. I knew I wanted a tattoo to represent that. It needed to remind me that I am not promised tomorrow, so I need to make today what I want it to be. It needed to be about finding out who I am and who I want to be. It needed to be a reminder to be passionate about something. I decided the best way to represent all of these things was in that one word. Passion. That is why I chose a heart on fire. I spent forever looking for the perfect image. The one I ended up with is exactly what I had in mind, and more. A few little tweaks, and it was like it had been made just for me.

People who have never gotten a tattoo always ask about the pain involved. Well, I think the pain level is pretty tolerable. In fact, the most painful thing about the whole experience was the fact that they had chosen to play “She’s Like the Wind” by Patrick Swayze on a loop in the tattoo shop. I mean, seriously? Who thought Patrick Swayze singing was a good idea? But I was told it would get funnier each time through, and it was true. He certainly put his whole dirty dancing, little heart into it. Poor thing.

So, a very big thank you to Jenn, at Outer Limits. She is awesome. She’s like the wind, through my tree……. (holy crap, that song sucks.)

TA DA!!!

And for a nice brain cleansing after being subjected to “She’s Like the Wind”, I offer another, much better song that was also a part of my tattoo soundtrack. Song, itself starts at 1:30.

So I managed to not get any sleep at all last night. None. I do that sometimes. My body has never really been all that normal when it comes to sleeping patterns. Hell, who am I kidding? I have never been close to normal in anything. But, as far as sleep goes, my schedule has always been a bit different than the conventional, with occasional periods of just completely jacked up. (Damn, that is sounding pretty much like my life again.) And since I was awake, I took my daughter to get breakfast from McDonald’s, which has been the object of her desire for quite some time….Which? Really? Ew. But my kids have never really been normal either, so… So, she got her bacon, egg, and cheese biscuit, and I got to see the sunrise. And then I was like, “hell, I am up, I have the whole day ahead of me, just think of all of the crap I can get done!”…. Suuuure. I did get some stuff done. Then I crashed, hard core at about 1:00. Hard to get anything done when I am comatose and drooling on myself in my chair. While I was awake all night, I was thinking about things…all kinds of things….my mind just goes…and I was thinking about this blog…and wondering what the hell I was thinking, starting it up again…and what was I going to write about…and who even cared….And then, I woke up from my chair nap to find these amazing responses to my last post. And I was, like, “Hell yes!” And feeling all encouraged and understood and girl power and crap. And I remembered what drew me to blogging…..no, writing…..in the first place. Words have power. Even if I am not a writer, I can throw my thoughts out there, look at them and try to make something of them. And, if I am really lucky, someone else will look at my words and be able to take something from them…..but even better….people take the time to share their words, and stories, and thoughts in return, And to me, that is awesome. Knowing there are other people out there who are questioning, considering, and struggling….because I swear, if I read one more facebook update about how happy and blessed and wonderful everyone’s life is, my head is going to explode, because I really can’t be the only one fumbling through this shit, can I? Come on, tell me I am not. I haven’t slept or showered, and I am probably delirious. Humor me.

Apparently I am one moody, moody person too, because in the three  hours I have been trying to write this (yes, I said three hours. Scratch that about my kids not really needing me oppressively. Holy crap.) I went from all uplifted and joyous to crabby and mad at the world. Not that I am not still all warm and fuzzy about the feedback people have shared….it is there…..just buried under the argh! and the gah! Nothing a shower, some peace and quiet, and the fact that I am getting a new tattoo tomorrow can’t fix. Temporarily anyway.

I have reached a point in my life where I am reevaluating everything…I mean even more than I normally do. I mentioned that this time around, my writing would be less about being a mom and more about me. The problem with that is…. being a mom is me. It is what I do…and most of what I am at this point in my life. Thing is, I have reached a time in my life where that is starting to feel very confining. I had my son when I was pretty young, so being a mom is all I have ever known in my adult life. Then I had my daughter, a little over five years later, and that role was reinforced. Not really a whole lot of time for self-exploration when you are in your second year of marriage, with a difficult 5 year old and an equally as difficult new baby, trying to work on your first home, now with a mortgage and a myriad of other grown up responsibilities.

So..what did I do? Well..I was a mother. That was me. So I threw myself into it headfirst. I made my own baby food. I used cloth diapers. I researched everything I possibly could about being the best mom I could be. And I love my kids like crazy, but being a mom has always felt like I am living someone else’s life.  Like when you are little, and play dress up, shuffling and clunking around the house in your mom’s high heels. Sure, I stumble through it, but it is awkward and difficult and far from graceful. Ok, so being a mom is definitely required of me, but it is by no means the sole way I want to define myself. I mean…I suck at it. Most days, I am barely scraping by. Thankfully, kids are pretty resilient and hardy creatures, and I have managed to keep them both healthy and alive…which is more than I can say for a lot of plants and even pets that I have owned. So I tried my hand at a few different things, trying to find my place in this world…..my own businesses….making jewelry…..blogging….and a mish mash of other projects and ventures (spelunking! under water basket weaving! churning my own butter!)…… with nothing really working. And with two little people needing me for something every second of the day, and many nights, as well…I didn’t really have the time or energy to devote to finding myself underneath the mom I had become.

Now my kids are getting a little older, and needing me a little less oppressively (most days anyway)…and so my mind and heart wander back to that place. That place of wondering who I am. What am I apart from a mother? And my reaching this place of questioning is met with mixed reactions. Not just from others in my life, but from myself. The guilt that lives in every mother…..hell, probably every woman…creeps in. How do I take time for myself without sacrificing something? When I spend a few hours, sitting at my computer, editing my images from sessions, should I be playing UNO or wii with the kids? (Or baking something? In an apron? When was the last time I baked a freaking cookie? Maybe vacuuming in pearls and high heels?) And when I am gone, on a Saturday, shooting a session, should I be doing something fun with the kids? Never mind anything that isn’t technically work….like making time to take my camera, and shoot and process some images for myself, and not for clients. How much time is there left to spare, to pursue the things I want to do…to become the person I want to be….without sacrificing the person that I need to be?

The load of guilt doesn’t get any lighter when I see other people’s responses to my desire to find myself. I mean, sure, they are supportive, but it is the subtext that is disturbing. When, after their words of encouragement, they feel the need to add, “Just remember there is a balance, don’t go crazy”….or “remember that your kids are not going to be young forever.”  As if I were going to, after 12 years of putting my kids first, suddenly begin locking myself in my room for hours on end, while they eat cereal for every meal, as the house gets buried in clutter and mountains of laundry. Oh wait….that is what my life looks like anyway. Kidding. About the hours locked in my room part, anyway. “There is no shame in just being a good mother. That is the toughest and most important job there is,” I am told. Of course. I will never argue that. But it should not be wrong for me to also want more. No man has ever been told that being a good father should be enough when he spoke of what he wanted to be when he grew up. So why would we tell our daughters that? I want to be a good mom to my kids as well as happy with who I am aside from being a mother. And I hope that I can set an example for my daughter so that she strives for the same. Now….I just need to figure out what the hell that means.

Did you ever rummage around through a junk drawer or box full of stuff and find something really cool? Something that makes you smile, or brings back memories? And you wonder how you let it get shoved aside? Well, this weekend, I found that something, tucked away in bits and pieces on my computer. I used to have a blog. A blog that wasn’t for my business. A blog with a voice that was my own. For four years, I dumped all of myself into the words there. Sometimes they were serious, sometimes they were sad, sometimes they were just silly….but they were always me. But then, what was once my voice became strained and unfamiliar. It became more of a chore than an outlet. It lost its luster. Its appeal. Like many things in my life, I let it go.

When I came across some of the old things I had written, I was unable to sleep that night. The idea of writing things down and sorting them out has always settled me. When my life had chaos, I was writing. Something. Somewhere. It is only natural then, that since my life is in chaos, once again, that the thought of my blog kept pulling on me. Now, I am not a writer, by any means. Any words I manage to get written down are usually nothing more than a stream of consciousness. A brain dump. A purging. But I think that is exactly what I could use in my life right now.

This blog is that old blog..in the sense that the name is the same. I have made all of my old entries private, aside from a few that still speak in a voice I feel confident is my own. I may add a few more, as time goes on…but most everything here will be new. Just as I have changed and grown over the last few years, this blog will reflect that. Less of a “mom blog” and more of a me blog. Of course, there will still be plenty of me sorting through being a mom, as it is such a huge part of my life. But now, it is not the only part. And I am hoping that sharing words and images here will help me as much as it has in the past. Because, while turmoil may be good for art, it is hell on the soul.

Every night I say I am going to start fresh tomorrow. I will not be grumpy. I will not snap and yell. I will be understanding. And for the love of Pete, I will read the freaking book or color a freaking picture. But each morning is not bringing change. It brings the same old, tired, worn down, crabby, heartbreakingly ambivalent mother. The one I can’t stand. The one I’m sure my kids can’t stand either. And I feel like I am failing. I know I am failing. I torture myself with thoughts of my kids being permanently scarred by their mother’s lack of ability to get her shit together.

This is the part of the post that should contain something along the lines of….but tomorrow is a new day….a day of second chances…..and we all scurried off the park to frolic in the grass and look for shapes in the clouds and talk about our dreams. It should be.

Lord, please let tomorrow be that new day…..

I was walking down the hallway past his room, he came bounding out behind me. He hugged me from behind and said “I love you.” Just like that. All nonchalant. And I heard many trumpets in a fanfare, thunderous applause, and fireworks – right there in the hallway. “Thank you! I love you too!” I said. He scurried off, and I waited until he disappeared around the corner before collapsing into a pile of stunned disbelief.

I have spent the better part of the past nine years being The Boy’s buffer to the outside world. For every odd behavior, I had an explanation. For every social shortcoming, I was ever present – swooping in and smoothing over. For most any situation, I over-planned, over-analyzed, and micro-managed. I came prepared. I avoided. And for many years, my efforts paid off, as only those closest to us had any indication that The Boy was anything but “normal”. It was all-consuming, this attempt at keeping up appearances, and soon it so infiltrated my way of thinking that it simply became matter-of-course. But as The Boy got older, his peculiarities became more conspicuous. Behavior that may have been tolerated in a very young child were seen as odd, annoying, or rude in an older child. The Boy stepped more frequently into situations in which I was not present in to help him navigate. I felt my control slipping away.

The more the control slipped, the more the concern about the thoughts and opinions of others took hold. The looks of exasperation or annoyance, while usually lost on The Boy, were like knives to my heart. And so for a brief moment, this diagnosis brought with it some degree of relief. Now I could show people why The Boy does the things he does and acts the way he acts! The next time I saw that all too familiar look of annoyance on someone’s face, I would be ready. “He has Asperger’s,” I could declare…and the look would be replaced with one of understanding. Obviously, the comfort of these thoughts was fleeting. Of course I could not go around announcing to everyone that The Boy had AS. How insensitive and tactless that would be.

I think one of the trickiest things about Asperger’s Syndrome is that those living their lives on this little section of the autistic spectrum appear to most people to be “normal”. But their idiosyncrasies or way of relating to the world may get them labeled as weird, strange, or annoying. If The Boy’s differences were somehow physical, they would elicit responses of understanding and curiosity…but because his unique way of thinking and interacting with the world is not obvious, the reactions are often quite negative. And that is painful to watch. At times I still resist the urge to blurt out, “He has Asperger’s!” in an attempt to shift the attitude to one more of acceptance than judgment. But I can’t. So now I am confronted with the knowledge that The Boy is going to be seen as “different” or “odd”…at times, even “annoying”…and there is nothing I can say or do to change that. What I can do is adjust my own way of thinking. I need to take hold of the fact that the opinions of others do not define The Boy. It is these very differences that make him who he is. And I love who he is. I need to use that fact to insulate my heart against the pain of having my child be anything less than cherished and accepted in the eyes of others. It is not an easy task, but it is so necessary. How am I to teach The Boy to cope if I cannot cope myself?

But strangely, even after dealing with these issues for years, upon diagnosis, I find myself moving through the various stages of grief. I seemed to skim right through denial. We have been through too much to even entertain that. Now I spend my time bouncing around between anger, bargaining, and acceptance, at a frenetic pace at times…like a pinball. I see acceptance on the horizon, then a neighbor talks excitedly about signing his son up for football…and PING! I am angry once again. I don’t want to stay there, but I get the feeling that I must let it work through. I must allow myself that anger to move on fully to acceptance. But it is tiring being angry, and I don’t have that energy to spare. I need every bit of that energy to keep myself afloat….and to hold The Boy’s head above water. And so everyday I tread water in this way. And when I am angry, or lose focus, we slip under…and it is quiet, still for a moment. Then the flailing begins and we struggle back to the surface gasping for air and continue the paddling. But there are days that we don’t just tread water. Something clicks and we swim forward together with long, reaching strokes. I live for those days. They give me the strength to keep treading, glancing back over my shoulder at the distance we were able to travel.

We haven’t had one of those days in awhile, it seems, and I feel like I am failing. Spiraling down and pulling The Boy with me. I can’t get into a groove with homeschooling. His schedule goes wacky. I am not sleeping. He is not sleeping. If I could…just…get…back…in …..control. I am his mother, his teacher, his example, his mentor, his confidant, his life preserver. If I can’t stay afloat, how can he? But sometimes I just can’t do it. I just can’t. And I am ashamed of myself for not being able to pull it together. And I scold myself and demand perfection…or maybe just improvement. Something. Anything. And eventually, I pull out of it and refocus and the cycle begins again.

Right now I am exhausted…and waiting…please let me find the strength to begin again.

I felt The Girl come up behind me. “Mama, what’s this?”

I shuffled papers for another few seconds and glanced over my shoulder at her. What she held took me a bit off guard. My pause did not go unnoticed. “Mama?”

“Oh, just some of Mommy’s old things. Put it down right there, okay? Thanks.”

What does one say when faced with an old pregnancy test from a baby that does not exist? The Girl had discovered the small box that held all that there is of The Someone That Never Was. Before there was The Girl, there was another second pink line… another moment of joy and gratitude…another moment of feeling overwhelmingly blessed.

The Husband and I had decided to try to get pregnant only six months after getting married. I read the results of the test (the test The Girl held) after only our second month of trying. I was shocked. Who knew it would happen so quickly? The Husband! I sprang into action. Father’s Day was coming soon. The Boy and I painted signs on poster board on the garage floor. It is one of those moments I can see in my mind like it was yesterday. So cliche, but so true. The Boy and I hunched over the poster board… painting and talking. Talking about what it meant for mommy to have “a baby in her belly”. Do you want a brother or sister? A brother, of course. Hurry! We have to hurry! They look great, don’t you think? Yep. I want to hang this one, mama. Okay, bud. Let’s go!

We took the signs to a spot near our house. The road curved there, and there was a fence there where people would sometimes hang signs. Yard Sale. Bake Sale. But not this day. On this day, the sign read “Happy Father’s Day! Love The Boy and Baby!” We hurried home in a flurry of excitement and waited. The Boy was watching TV. I was pacing between the windows, waiting to catch a glimpse of The Husband’s car. He was soon home and there was shock…and laughing…and crying…and more laughing. And of course, much happiness.

On Father’s Day weekend, we had a full schedule planned. The Boy was spending the weekend with his dad and The Husband and I went out on a date. We stopped at Target for some cards and paper…and took our first stroll through the baby aisle. We skipped dinner, because my stomach had already begun acting a bit skittish, and ended the evening with ice cream. White chocolate with M& M’s from Coldstone. We headed home to get some sleep. In the morning, we would be going to church with The Husband’s parents for Father’s Day and they did not yet know of our news. We had hatched a plan to tell them by making an insert to slip into their church bulletins. It read “Congratulations to Mr. and Mrs. Husband’s Parents, who are expecting a new grandchild.” We had a card signed from the baby – “See you in February!” In a glow of contentment, we went to bed.

In the grayness of the early morning, my eyes popped open. What time is it? What is that? No…no…oh, no. Okay, wait…calm down. I rushed to the bathroom. My eyes squinting against the bright light. No…no….please, no. My heart wrenched. My stomach knotted. A lump choked my throat. I was bleeding. Not just a little. I woke up The Husband.

“I’m bleeding,” I said a little too loudly. My voice was strained with the effort of holding back tears.

We headed off to the ER in a haze. I was rushed into a room at the mention of the words “pregnant” and “bleeding”.

They took blood and we waited. They performed and ultrasound. It doesn’t look good. One more ultrasound. I’m sorry. A nurse lowers her head and quickly ducks out of the room. A look of pity. We will need to give you a shot…let nature take it’s course…come back to make sure there is nothing left. Nothing left. We will get you out of here as soon as possible. Please try to rest.

And so it was. That quickly, all of the hope we had for the future was gone. Two words and it was over. I’m sorry. I’m sorry. My husband spent Father’s Day in the hospital. Not seeing the smile on his Father’s face as he learned that he was going to have a grandchild. I don’t even remember getting home. The Husband and I spent the day in silence. What can you say? At some point, we both ended up sitting on the bed. Our eyes met and we both collapsed into tears. I’m sorry.

How do I tell The Girl that for a brief moment, there was another? That there was a Someone and then he (she?) was gone…without ever having really been there at all? How can her mind grasp the loss when my own still finds it difficult? And so I say nothing. I carefully repack the small box and tuck it back in it’s place. And I remember again That Someone That Never Was, as I sometimes do. When I hear of another couple’s loss. When someone announces they are expecting. Every February 22. And countless other times. I remember because of my sense of loss…but I also remember out of a sense of duty. The Someone exists through my memory. I must remember. If I don’t, then who will? I remember to make that Someone real. There was no funeral, no flowers, no condolences. We mourned alone. We suffered a loss that was unseen or misunderstood at best….unacknowledged and trivialized at worst. In that small box is the only physical presence of that Someone on this earth. A glimpse of what could have been. What almost was. And what almost was not, I realize with a jolt. If that Someone were here, then The Girl would not be. I can’t imagine my life without The Girl.

“Mama? Mama? ” She taps my shoulder. I turn. She pokes me and grins. That smile is a soothing ointment on a wound that will never heal. With her smile, the pain lessens, but it will never disappear completely. I won’t let it. That pain holds my Someone.

I don’t want to get into details because my brain is tired of rolling it over. But the script reads blah, blah, blah…something else wrong….blah, blah, blah….Asperger’s Syndrome…wait, what? that was ruled out….too young to be ruled out…blah, blah, blah…wait, but I said this years ago. The dr. said “no”…freaking, useless, doctors….I know my son…blah, blah blah…more tests, but looks pretty likely. Fine then. Test. I know what the results will be. I said Asperger’s YEARS ago.

The Boy is supposed to go to his dad’s tomorrow. He is afraid to go. He loves going to his dad’s. Loves it. But that is where he got the flu or food poisoning…or whatever. He doesn’t want to go. He hasn’t seen his dad in 2 months. I said it is time to go. Get back on the horse, right? Wait…right? Right? I don’t know. It seems right. I see that The Boy needs a push…a little nudge. He needs to try to take his life back….one little piece at a time. I say “You are going. You can do this. ” He tears up at its mention. He says he will go next week. He has been saying that for weeks. His dad comes at 10:00 tomorrow morning. I feel it is right. But I sit on the edge of the bed watching him sleep…and cry. And I have one of those conversations with God that starts “God, I don’t ask for much….” But I do ask – all of the time.“Okay, God, The Boy doesn’t ask for much…..Please make this right. Please take away this fear…this…thing….that has taken hold of my son. He is NINE YEARS OLD.” But I am not angry. No, not angry. Just tired and heartbroken…and pleading with my God for one small miracle for my son. Just let him wake up with no fear. I can’t close the door on his dad’s truck and see him peering at me through the window with that fear in his eyes. Will I cave? Will I rip him out of the car and shelter him? Please. Will I be strong enough? Please. Am I right? Please God.

You hear the saying that having a child is like deciding to forever have your heart go walking outside your body. It’s a beautiful sentiment, but I don’t care about my heart.

I could write a novel on the difficulties The Boy has had since day one…but I will try to sum up the latest. About six weeks ago, The Boy got a touch of food poisoning. He threw up…only once. It was the second time in his whole life he had ever thrown up. Really. The first time was his first day of school in the first grade. At the lunch table. In front of everyone. Someone he didn’t know had to help clean him up. He had to wear someone else’s emergency clothes home. He then, in the worst case of the stomach flu I have ever seen, threw up every 15 minutes, like clockwork, for then next 48 hours. It was horrific. While most people would look back at a memory like that and cringe, but move on, The Boy has internalized it and it has manifested itself in this phobia. It may seem silly. No one likes to throw up, right? And throwing up is not something you have to deal with very often anyway, so what’s the big deal? In the past six weeks, I have watched this phobia wrap its tentacles around my baby boy and slowly begin to squeeze the life out of him.

The Boy eats nothing. For the first weeks…yes, weeks…after the incident, The Boy ate only Saltines and strawberry milk. Week three, he added Tums to his diet… which we removed shortly after. He now eats english muffins and plain In ‘n’ Out hamburgers…sometimes a quesadilla. He has given up all but a small handful of foods. He used to beg to go out to dinner every night. Now he begs for us to bring it home to eat. He takes every meal into his room because he associates sitting at the table to eat with throwing up because he threw up in the middle of dinner. His friends come to get him and he makes excuses not to play. On the occasions he does choose to go outside, he will either come rushing back in with shrieks of panic, thinking he was going to throw up again, or maybe make another lame excuse and retire to his room, leaving his friends bewildered. He has lost so much weight that looking at him sometimes makes me cry. He is still within the parameters of healthy, but just barely. He fears going in the car because the “roads are bumpy” – he will only go after the driver promises to “go slow”. He won’t go to visit his dad or cousins – something he has always loved to do.

We have been trying every angle to help him get a handle on this. The bottom line is…no matter how much you want to…you can not make some one eat. Now he eats just enough to keep us pacified and have us put our mentions of doctors and other help on hold.

Tonight, I attempted to move him forward. I told him I needed him to eat with the family. I made him a plain hamburger, and set us all up picnic-style on the floor so we could watch a movie. The hamburger got barely a nibble. I told him he needed to eat something. He made himself an english muffin. Another nibble. We presented him with an Ensure. A few slurps and he couldn’t go on. His stomach was “upset”. As he retreated to his room, there was the familiar shriek.

“Mom, I’m going to throw up! Hurry! Please!”

I followed. None too quickly, I am ashamed to admit…but I knew that yet again, there would be no throwing up. He was misidentifying hunger pangs as the need to throw up. As I stood and rubbed his back, I assured him that he was not going to throw up. “

“It is in your mind,” I told him. “You”re going to need to get control over it.” Then he broke my heart.

He sobbed and said “I want to, but it is defeating me.”

And my heart broke. Again.

Later, he asked if therapy could make you forget something that you wanted out of your mind. We talked about therapy and he asked for help. I am relieved. Exhausted. Depleted.