Grief like duct tape.

*I started writing this several weeks ago, the day after my last post actually. I have taken several days going over and over this, trying to convey my feelings. Changing it makes it less meaningful, shows less of what I feel. I will just put this little foreword saying that this is not about despair, or regret. But about embracing the truth inside of myself, finding freedom to love myself, and my son, as we are. Without admitting the things that bring me to my knees to myself, I never would have been able to accept the beauty and love in all the other things I have gone through. I don't see myself as crippled, I see myself as a butterfly in a cocoon. Like the Emperor Butterfly, without the struggle and pain of coming through my challenge to break free, I would wither and die. I hope to encourage others to admit their truths to themselves. We have to confront ourselves in order to be free.*

     Today a strange thing happened. I saw briefly into a different universe. A universe where I was still me. I had gone to the same schools, and had the same friends, I had laughed at the same stupid jokes, and lemon was still my favorite food group. A place where I had three children, and this time they were whole.
      Like the plot in almost any sci-fi flick I saw the universes spread before me; small choices, ones you don't even notice, lead your life down a different path. Where time is non-linear and fluid, leading to different possible outcomes, a different life with each choice.
      I took my daughter on a field trip with her class, a group of bright eyed 2nd graders all excited to be out of school, flushed from a brisk walk from their elementary school to the high school a mile or two away. This particular high school has a yearly project; the students form small groups write and illustrate a children's book, and read them to local K, 1st, and 2nd graders at a "Reading Fair". This year that included interactive puppet stations, a demonstration by the robotics team (their robot was a frisbee throwing champ!), and they had the Drama Clubs Improv Group put on a cute show for the kids.
      They asked the students what they wanted them to be, acting out what the children choose; the kids asked them to pretend to be the Keebler Elves. The kids got to pick different emotions and settings for the skit, and they repeated the same story each time changing it to the whims of their short audience. The first time they decided to make cookies, but needed children for the "special ingredient" (MMMM Children are delicious!!). In the next the kids told them to do it like a "Haunted house". 
      As the show grew progressively sillier and more enthusiastic, my daughter climbed into my lap laughing and holding my hand. Sharing one of our very rare opportunities to just be "in the moment". No Z-man, no worrying about Fort Knox,  where the food was, or using our positions to keep him blocked in so we could try to focus on the play, and pray there wouldn't be a meltdown. Just mommy, and daughter, relaxed and living a moment of other people's "normal".
      Usually, I do not spend a lot of time dwelling on these moments from the point of view that it's part of a missed life, I just enjoy stress free time with my kids breathing in the peace. 
      But today . . .  Oh today. . .  This beautiful little blond girl from Muffins class, who was the same height, and of a similar bone and facial structure to my daughter came up to us, and asked if she could be her partner and sit with us during the show. I'm not sure what it was about her that grabbed my heart (oh! if you were only my daughter), but as I watched the two of them holding hands and whispering before we walked in, her hair shining in the sun exactly the same way that Z-man's does, I could only see that path where a different small choice led to having twin daughters.
      When we sat down inside she was bursting with excitement, and so eager to be sitting with us. When Muffin sat in my lap, she scooted a seat closer to whisper and giggle with us, holding our hands and loving the thrill of the scary bits. Every moment was indescribably sweet, and unbearably twisted a tiny little dagger stuck deep between my ribs, burrowing it's way into my heart. (What if...)



      When I found out I was pregnant with twins, I had believed they were both girls. I would have two beautiful daughters to dress in near matching dresses, with braided hair and sweet voices. Two girls to grow up together, sisters to love and support each other their life long, the way only sisters can. My dream was of watching that bond, twin sisters sharing something us singletons can't experience or understand. A dream that was squashed when I was 14 weeks pregnant and the Dr. told me my twins were a boy and a girl, but it was alright, I adjusted. Brother and sister was fine too. (A GIRL!! I get to have a daughter!!) 
     It wasn't that I don't like boys, but I knew these were the only three children I would have. I already had a boy, and I wanted two girls to share tea parties, and nail painting, and coloring, and paper dolls with. It was the first of my little "dreams" of my twins, dreams we all have of our future children when we find out that we're pregnant. The first that I would have to let go of.
      When Z-man was born, I had to let go of every single dream I had ever had about my baby, all at once. Worse than a band-aid being ripped off, it was like a great swath of duct tape across my soul suddenly yanked off, and in a stomach dropping, heart sickening second you realize that was the duct tape holding you to the wall. You know that patches of hair and flesh have been torn away, you know you're about to sink helplessly and limply to the floor, probably smashing your nose along the way. You just don't feel it yet in that second before your nerves register what just happened. In a way it's worse, that numb horror of looking at the world as if it has suddenly been paused, knowing that what just happened is inevitable, absolute. Impossible. Not me, this isn't happening to me, I'm going to wake up any second now and life will be as it always was. Right?

      Life goes on, that thing we didn't sign up for becomes our reality. Even horror and fear turn to a form of normal; busy work, and maybe an occasional sense of dread for the future are all consuming. They tell you that you're grieving. They tell you that it's normal.
      Sometimes I just stood in the shower and cried, but even then I didn't really have time for a shower, and there was even less time for crying. So I jumped out and throw clothes on over my still wet body, not even bothering to dry my tears as I kept moving. (Breathe. Do one thing, just one. Breathe. Remember what you were doing. Breathe, Do something, anything. Just breathe.)
      When the moments come that remind you, you are a grieving parent, it hits you full in the face. It feels like the world is coming undone, as if you have failed to love your child enough, failed forgive yourself enough. It feels like you have failed to pass a test, and you're wrong for grieving that normal life you didn't live.
      I love Z with everything I am, more than I could ever write in some trite little blog post, for anything ever written is trite compared to what we parents feel in our souls for out children. Words can not contain it. I feel blessed to be walking this path and rejoice in the changes to my life, to my soul, that having Z-man has brought about in me. I have no doubts that this is the ONLY path that could possibly bring this growth and change about in me; I don't ever want to be the old me again.
      But that little girl, that one blonde, stunning, ordinary little girl, she ripped off another strip of duct tape revealing another wound that I'm not sure if it was covering, or if its sudden removal caused. One small insignificant little decision in my past might have given me her instead. Had I been grieving already for her loss? It was a moment, just a moment, but I saw clearly into that other universe. The one where we were normal, where we didn't know you could have bio-metric locks in your house, or how to count calories and fat/protein ratios in my head. That one were I wasn't dreaming of a Prader-Willi Island for us to live on with all the other PWS families.
      The funny thing about life is that we, as human beings, are so rarely happy with our situation in it. I know I would still dream of things I thought I was missing out on. I would probably still have dreams of an Island to go live on with my friends, where there no judgmental annoying, defiantly ignorant people, or whatever my definition of the life I wanted to escape from is in that other place. I am sure I would still think about the what ifs, who doesn't? (What if I had found out I would be a single parent sooner... What if I had the chicken instead of steak?... What if I knew the truth the first time 'round... What will we do if there are really aliens living on Earth already?) I'm positive I would still grieve for my children, for something they didn't do that I had expected them to do. Of course I would have false expectations, we all do. We all have a picture in our heads about who our children would be when we were growing them inside of us. And like all human beings through out the history of all time, each child is their own person. They do not turn into what other people expect them to be, they disappoint and fail our exuberant dreams for them. Maybe they don't love cooking, or chocolate, perhaps they prefer a different genre of books and can't stand the taste of artichokes. Sometimes they don't have quite the sense of humor we expected because that's "what our family" does. They don't go to the college we had planned, or perhaps even go to college at all. If you believe you are entitled to your dream of course you won't be able to stand the loss of those dreams.
      I don't believe in levels of grief, for we all grieve, we are all effected by our disappointments. I do believe in lengths of grief; some of us holding on bitterly to our loss as if it were the only thing that matters. We all grieve, to varying extents, we all do it silently keeping it hidden even from ourselves, burying it deeply and hoping that no one sees it. 

      Dark and formless, silent, waiting for some blond little girl to hold your hand and smile at you. 

      We hide our feelings because we are afraid of what others will think, of what they will say. We think we are protecting our image, and perhaps even being considerate to others who don't need our emotional vomit on their shoes. But the reality is the person we hide our feelings from the most is ourselves. We blame someone else for how we're feeling, or blame it on hormones, anything that keeps it from staring us in the face. We swear, "I don't miss him," "She never mattered," "You can't upset me," as if saying it makes it so. As if others can't see through us. We cover it with band-aids and duct tape and perch on our walls precariously, ignoring the peeling tape and seeping wounds. 
      We all do it, not just as grieving parents. 

      I am grateful that I had that strip of tape pulled off. Perhaps I'm a bit morbid and I like looking at the wounds and analyzing how they happened, poking and prodding to see if I can find the EXACT spot where it hurts. To see if I can decipher the exact cause and severity. But until I know it's there I can't do anything, it just festers away under the surface, safely tucked out of sight and eating away at me slowly. So while I went home and cried ( Which path did I take? Do you know what is the exact point of this path split I'm on? Was it the wrong choice? Who can show me which choice brought me here?!?) I also celebrated acknowledging this sudden revelation. It brings me a step closer to that mystical land they tell you that you will reach when you're done grieving. What they don't tell you is life evolves, and so do the things that disappoint you, things that feel like loss when they prove impossible.
    Will you learn to evolve and change yourself and what you expect from the world? Will you still expect the things in your daydreams to not disappoint you? Or will you step outside, weeping and stunned as the bandage is ripped away, shivering in the cold air as the unexpected and impossible changes you into a person you never dreamed you could be in your wildest dreams?

The beauty of Scolding Rolly Pollies.

      When I was a little girl I had two loves; pretending I could grow gills if only I spent enough time swimming, and books. I would spend hours and hours lost in my own world. A world created and contained in the words and friends poured onto their pages; worlds now contained inside of my head. My imagination carrying on their stories long after the last page had been read and the book was back on my shelf. (Or more likely under my bed.)
      I imagined myself on an island with a black horse, or a babble fish inside of my head, of knights and kings. I dreamed of an age of robots and artificial intelligence, being the one to save robots and humans alike. I flew through the stars, and spoke with foxes. I trained bears, and loved a Lion. I fought Roman invasion, and dined with the gods. All the things I imagined and all the things I loved were hidden between the covers of my beloved books.
      Left over unwanted bits of wood, mashed up and spread out into paper and transformed into something else. Something alive. The world was rich with imagination, language, words and rules, so uniquely human.
      When I was very very little language came naturally to me, so naturally that it seemed supernatural or eerie to the adults around me. At my second birthday, I took my grandfather by the hand and walked him around to meet people, "I would like to introduce you to my Granddad." I don't remember, but I can imagine it was a little unsettling for some. When I was 4 I started kindergarten, a year earlier than my peers, and already reading proficiently. "See Jane run." Yes, but what about her birthday party, and the bow in her hair, and what did her sister bring her?
      Language, syntax; the conveyance of feelings and thoughts that change the world, bringing life and meaning to ordinary reality.
      This is what I grew up with, this is what I knew. When I was in 5th grade I was reading books like "Homer's The Illiad and The Odyssey" and "The Hitchhikers Guide to the Galaxy" and the Encyclopedia Britannica. I found comfort in words, this shared experience we call language. I took pride in it, and despaired in peoples brutal butchery of one of the most elegant ways of sharing our human condition with each other, even if it was just, "Put the butter on the table so we can eat, Mom." (Don't forget the comma please!!)
      Even when nothing in the world made sense, I had my sword. My words. I used to call them my weapon, which is another story we wont get into today.
      When my first son was very little, he said the expected "Momma" "Milky" and "NO!", but his very first word, the very first thing he made an effort to say because it mattered to him, was, "Aardvark". It wasn't a fluke, or an imagined "look at how advanced my baby is!" moment. He deliberately would pick up one of his letter books, point to the aardvark and say it's name.
      Brilliant! My son understands! He get's it! The important things in life are worth saying! I rejoiced and reveled in that moment, I breathed in deeply and knew all was right with the world. Words they mean so very much, often we actually pay little attention to them. We take for granted that we have language and higher thought, and the fact that this does make us special. We aren't just creatures scurrying about on the earth, eating and breeding and fighting for our territory. We have the ability to be so much MORE.

      So you can see why, when my younger son was born and I was told that he would likely not talk until he was 5, it was a bit disconcerting. I will admit the broad implications of that didn't hit me at the time, nor could they. I was drowning in facts and data, therapy, and medications. Breathing was something I had to be reminded by others to do, as my brain didn't have room to remember this fundamental task of living. I thought, "It's ok, he will talk, so it will be fine."
     As the years went by the reality sunk in, it was a lesson I was not prepared for. Trying to teach sign to a baby who doesn't have the physical strength to lift his hands for more than a few seconds at a time, and who really isn't interested in using his energy for it is quite frustrating. You don't realize that you pick up on their cues; learning what means, "I'm tired," and what means, "I need a clean diaper." It's a matter of necessity. One day someone says, "Wow, you really know what he would say if he could, don't you?" And you suddenly see, in a moment of clarity, that you can at once hear your child and fulfill their needs, and not hear them at all. No, I don't really know what he would say. I know what he wants, I know what he needs. I don't know what he thinks. Not really. Oh you get the general gist of things, "I HATE yellow carrots! They belong on the floor!" "I LOVE Elmo, lets wiggle dance some more!" But I don't know what he loves or hates about those things.

      When Z-man was about 4 we moved back to southern California after having lived in Florida, a place vibrant and alive with insects and reptiles, birds, and turtles all scurrying about and providing an endlessly entertaining environment for my children. But here in coastal Southern California, if you're very lucky on a warm day in the right part of town you might see as many as 3 or 4 lizards, and a few insects aside from a house fly or a bee. (If you see a wasp or fuzzy red ant, just go somewhere else!)
      The boys were particularly disappointed by this change of the outdoors, and I am still regularly asked when we will move back to Florida. Florida is the "dream" around here.
      When Topher was adjusting to being back, and much lamenting his loss of flora and fauna to explore, he discovered that we did have one bug here in great abundance. The Rolly Pollie, or the Pill Bug.
      Topher had, at a very young age, decided that when he grew up he wanted to be an entomologist. (I didn't even know he knew the word "entomologist" at that time.) He had a various selection of bug watching and catching equipment, including a wide assortment of bug jars with a magnification lens on one end to observe your new leggy, and hopefully antenna-ed new friend. (I find bugs without antenna decidedly creepy...) Since the only real bug selection consisted of various sizes and colors of rolly pollies, that is what he filled his jars with. Separated by size, color, and even spotting patterns, there were containers littered across the yard many filled with dozens upon dozens of the tiny armored critters.
      Z-man was still next to non-verbal at this point, often refusing to even say something as simple as "no" or to sign "please". One day something extraordinary happened, Z-man noticed the rolly pollies. Not just a, "Hey, look at those bug thingies in here, lets catch some more!" kind of a way. Rather in a, "Hey, these bugs are all jammed in here, and they're climbing all over each other!" way.
      Actually that's exactly what it was, Z-man was deeply distressed that all of those rolly pollies were rudely and incessantly clambering and climbing over each other! He sat there in the grass, blonde hair shining like the sun, hands held before him cradling the containers of bugs, deeply and completely heartbroken and ANGRY that the bugs would not STOP! He was so angry, he had to say it. Red faced and intense almost yelling, "Hey!" "NO!" "NO Ciem!" (climb) "HEY, TOP!!" (stop)  "I SAY NO!"
      My virtually non-verbal, but my no means mute, son was speaking! Sure not enough to be considered a conversation, but definitely enough to get his point across. Those bugs were WRONG to be climbing on each other. It was rude, it was mean, it was intolerable.
      I was blown away, it was a reminder (a slap in the face, really) that there was a full blown human being inside of my son. My son, whom I loved more than anyone else on the planet loved him, and I had marginalized a part of him because he couldn't SAY something. In that moment I realized just how much I hated that he couldn't talk for all those years. I realized how much I just *did* things for him because I knew what he wanted. Most importantly, I realized how much humanity there is inside of each of us, ESPECIALLY those who can't or wont say what they are thinking.

      Language, it is such a fundamental part of being human, of our interactions with each other. Our understanding and expressing of our emotions, our love for each other. It has only been about a year since Z-man started to speak well enough for people outside of his family to understand him. And it is still rough, he doesn't use complete sentences, and severe apraxia keeps him from being able to get many words out, even though he's thinking them. But still, he can say what he really needs to. It has been a hard road to get here, and I am so thankful for the hard work everyone put into bringing him this far. We rejoice in the smallest of victories, and it makes the world a different place than I lived in before.

      It's all the moments that made everything sparkle and glow and GROW that we take for granted, the moments that we miss because they seem so mundane. These are the moments my life is about, and why I named my blog.

      This is about finding the laughter and joy, the beauty and absurdity in Scolding Rolly Pollies.

Don't scare the natives

      I decided to go back in time, journey into my past and take a look around. Some of you call this photographs, maybe I used to too. 

      Now I look at photos and something is wrong, something is off. I can't remember what I felt like, I don't know who those people are. It's like a huge chunk of time was removed and replaced with a sense of passing, but there are no markers. Where are the milestones? Maybe the problem is greater than that, maybe the gap isn't in the photo, maybe it's my memory. Something happened to me, a shock so great that my brain hasn't recovered.

      When my twins were born, and something was wrong (so wrong), there were a handful of very nice people at my parents church who came to help a few days a week, for nearly a year. At least that's what I'm told. Several years later, I visited my parents church after having lived out of state. A woman walked up to me, "Amelia! How are you? How is Z?!" she said, concern etched on her face. She asked after my other children, and after my ex by name. "Did you guys work things out?" I smiled, and nodded, I answered her questions, and delved into personal issues. To shocked to know how to say, "Clearly you know me, but I'm not really comfortable talking to a stranger about this personal stuff you're pulling out and strewing across the floor." I felt invaded, I felt betrayed. When she walked away, I turned to my mom, who had surprisingly not interrupted this woman's personal questioning, and asked her, "Who was that?!" I don't know how much showed on my face, but all I could feel was a numb shock when my mother said, "You know her! She came to the house at least two or three times a week after Z was born to help with Topher and Muffin so you could sleep and take care of Z."

      The betrayal was my own, my mind had failed me. I was not invaded, I was void. I think I nodded dumbly and walked away. (Of course I don't remember; why would I remember something that important?)

    I spent days, weeks, thinking about that year. The year I had twins. I have vague memories of the year before, living in Phoenix pregnant, planning for two new babies and raising my still infant son. (Did you know that a parking lot can suck the moisture out of your body, from your feet, through your shoes at 10:30 at night? I didn't. But it's true.) I found out so early they were twins, at barely 7 weeks; it was only 7 weeks later that I would find out they were a boy and a girl. 

      Baby A and Baby B the technician labeled them. I poured incalculable energy into naming them, discarding name after name (Ok, only the boy name, my daughter was named before I'd ever even met her Father...). What do you name twins so they go together; a set without a cliche rhyming pair of names that make you want to hurl. Or pat them on their heads, silently apologizing for their parents inconsideration.
      I knit them matching blankets, a beautiful dusty rose color for my daughter, and a cool blue and grey patterned yarn for my son. I braced myself against the knowledge that I would soon be a single parent to not only one, but three babies. I gathered baby clothes, and dreamed of light haired brown eyed children. There was little chance of sharing my blue eyes with my babies, but I secretly dreamed of blue eyed, light haired children like my siblings and I had been. For some reason I saw them, my future children who were growing inside of me, playing in the same yard my sister and brother had been toddlers in. The one we had moved away from when my brother was a toddler still. 
      I think that house was a place in my mind where things were still right in the world. Where there were always baby bunnies, and we made refrigerator boxes into houses that we drew a TV so we could do everything outside. Where my first dog was still alive, and even though we knew it was our uncle who had climbed onto the roof, we still believed the sleigh bells were Santa's reindeer (Even that time when he fell off into the bushes). A place of memories. I remember the packages my Nana sent to us from England, candies and licorice, biscuits and toys you couldn't find here. One year, when my sister was still in diapers, she sent us matching blue quilted raincoats with red paisley lining, warm and thick, perfect for little girls in London. Here, we were in the middle of a drought, but my mother bundled us up in them anyways, brought us outside and took pictures in the bright Southern California sunshine. I remember we wore them outside constantly, playing in the hose because raincoats are made for playing in the wet. They were so hot and stuffy, and we never buttoned them up but oh how we loved them! I remember.

      I remember. So why can't I remember? 

      When you're pregnant, you have so many ideas in your head. Even if your like me, and believe that nothing is certain, and expectations of the future are fairly pointless; you can't help it. You can't help dreaming of their faces, their tiny toes. The way they grunt happily as they're nursing, tiny fingers closing around yours or tightly grasping your top as their greed turns into those soft moments of love without words. Love like this has no words, you can't help trying to explain it. "I love you to the moon. And BACK again!" A love that can't be felt any other way. (Sorry daddy you're not the Milk Bags) You imagine them running, hear their laughter, you wonder who's sense of humor they'll have, what they will want to be when they grow up. You feel confident. (Oh God, please make me confident, and wise!) You can raise them to be compassionate and kind and tough, like your mom raised you to be. 

      If you're like me, you know that your dreams will probably not turn out to be the fairy tale that pops into your head, but the moments when all is perfect, will make it all perfect. Or perfect adjacent, which is the same thing really.

      Why can't I remember? I don't remember the way my daughter smelled. I can't recall the first time she laughed, or how she sounded as a baby. I can't think of a single time I sat down and played with my babies' feet, or those moments when it was perfect. I don't remember nursing, or cuddling, or the names of people we met. WHY can't I remember??

  What I do remember is hard hospital chairs; tubes and wires; calorie counts, endless new medical terms; terror like a snake coiled in your gut, striking at your heart every time it starts to pound loudly; syringes  and the hissing of oxygen tanks; the dirty antiseptic smell common to the thousand Dr.'s offices I visited. I remember the charts on the wall, calculating med doses, names of nurses I will never see again. I remember the rocking chair in the corner of my bedroom that was never comfortable enough for the hours I spent in it. I remember the way my baby didn't cry. Learning to reinsert an NG tube, scrambling to find the stethescope and new tape, and the jarring screech of alarms waking me. I remember cold hard facts, and the solid bleak reassurance of reality. This is here, it wont go away. You ARE alive because this is your life...

      I think my imagination vanished the day the twins were born. The creativity sucked out of my body, evaporating as each new cold stone of fact was placed inside of me. (Reboot! Reboot! We have to dump this info, there's no room in here!) So I decided to take a trip back in time, and to see if the "she" that used to be is still there. Is "she" in that photo, or this friends story? I'm sorry, I don't remember your story. But I'll smile and nod and look enough like your friend that you see who you want to see on my face. (Don't let them know you're not a native!) Did she get scared and run away? Will I find her if I meditate, sit on the sand at the beach, and try to bring her back? How does your imagination just vanish? 

      I sat looking at photos and books that used to matter to me, used to be my story, my glorious balls of yarn. I wondered how I could forget the yarn I wove with my own hands. ("Don't you remember that time...??" "What's wrong with you?!?") As I sat, and looked at that fake me, that other me, it occurred to me; my brain is like a computer being repurposed, and in order for the take over to be implemented, a mass memory dump is necessary. Anything not necessary to survival is out the window; save the core processes only! Like any rapid memory dump, fragments remained behind and I have slowly and meticulously pieced them together and brought some memories back. 
        Then I look at pictures of my daughter when she was a baby. All I know is: I don't know my baby. I don't remember her first word, or step, I don't know when her teeth started coming in, or remember nursing her. My family tells stories about that year, I smile and nod; the expected responses, pretending I remember. Don't scare the natives, they don't take kindly to strangers.... They don't know I'm a stranger.

      You're probably asking what happened, what could possibly make someone ramble like a lunatic, and lose their mind quite like this? Well, it's rather a long story. A story for another day. I will tell you; I just want to prepare you, for you might not understand.

      The day I had my twins, I didn't know it yet, but my whole life had been pulled apart. Neatly diced into little bits and strewn around the void its disappearance had caused in my mind. Bits I would have to learn to recognize and gather up, most of them are still tossed into a basket labeled "To Sort", and stuffed in with balls of yarn, snippets of old clothing, and books I intended to read. (Why did I pick this book, I don't remember....) The world was inexplicably turned onto it's axis and vigorously shaken. STOP SHAKING ME!! 
      My son came into the world without crying, he simply looked around, opened his mouth in protest, and fell asleep. As if the effort of telling the world how he felt about being born was to great an effort. As if protesting were pointless. 

      It was such of blur of birth, and wonder, horror and laughter at the Dr who thought he could judge me by a text book. But that second, the one second I looked into my sons eyes before he closed them in exhaustion was THE moment. The endless moment reaching into forever when everything changed. It would be two weeks before I heard the words Prader-Willi Syndrome, and 6 weeks more before I would know... But I saw the course alteration, the new fork terrifying and bleak, like being forced to walk down the path at midnight when you know the Headless Horseman is going to ride. 

     But like every great revolution that takes place, leaving beauty and fresh growth, change, and hope in it's wake, the journey starts with pain and betrayal, horrors we don't want to imagine exist. But that is life. I think the truly beautiful things inside of us can never grow to their full potential without the bad things. The catalyst. The things other people look at and think of as ugly, or horrible. Every thing that happens to us is a moment a fork of an unimaginably amazing CHANCE to learn something. To grow something inside of us that moves us, takes us outside of what we knew. To see from a new perspective. To see who we were. (WHO was I?) Who we can be. 

    Human nature likes to take the path of least resistance. How DARE you do this to ME!! It's easier to blame someone else. (It's your dad's fault you didn't get that gene. Why did God do this to me!!) It's easier to be angry. But it hurts. It burns like hot needles pressed against your skin, trying to take out splinters that are so deep they pierce your soul. The thing about being confronted with it every single day, is that you can't just pretend it away. Today I can be normal...?! You're confronted with it, over and over and over. You face a choice, inside of you. Something that no one else can offer help or solace or advice for.

      Does this break me? Do I give in, and blame the world, God, FATE for my misfortune? Or do I CHANGE the words I use, the way I think. Do I change my perspective, step back, and ask, "What is GOOD for ME??"

      No matter how easy it is, no matter how justified we feel in it, anger is never "GOOD for ME". I choose to view my life as LIFE. Yes it's different from yours, maybe some of the things that are now my normal are scary and bizarre to you. Perhaps I laugh a little to easily to relieve the stress, or hold in tears I'm so used to not having time for. Sometimes I even give into the anger. Sometimes I rage that my child suffers. That my other children suffer through him. I'm only human!

      Don't feel sorry for me. I wouldn't be the person I am today without having walked this path. Don't try to comfort me, I am grateful, every single day; I am smarter, tougher, I can stand up for myself, I can stand up for my children. I bask in the golden sunlight. A dragon having earned the right. I am surrounded by the beauty of things most people will never even notice. I have been forever changed. And I CHOSE to take the good out of the bad, to wring and beat and glean every small drop of new perspective out of things that used to get me down.

      Don't let other people change you through their actions. Let your actions change who you believe yourself to be.

Life is like a ball of yarn

      When I thought about writing a book, or starting a blog, I thought I would tell the story of my life. But life doesn't fit neatly into a story, my stories don't even fit neatly into my life. Like balls of yarn after your kids get their hands on them, or you carry them around obsessively in a bag intending to make something useful out of them, the parts of your life become knotted and wound together. Different story lines may be noticeable by their color or texture but it's almost impossible to see where they intersect, where they begin and end. Which story do I meticulously and obsessively unwind and show you? How on earth can one ball of my life possibly show or explain who I am? 
      Since having kids, especially since the birth of Z I thought that would be the story. Being a mom, being a dragon. Sitting greedily on my treasure and showing it with pride. Look, this belongs to me! But even dragons have more to their story than piles of gold, and stolen treasures. They hunt and fight, they eat and cry and bath in golden sunlight as precious as the piles hidden in their caves. As the kids grew and I began to have an identity outside of milk provider, nurse, jungle gym, and cleaner of all things that come out of ones body, I thought I could write about my life again. 
      Which parts though? The artist? No, she hasn't picked up a paint brush or piece of charcoal since becoming a mom. Being a special needs mom, the bizarre absurdity of Prader-Willi, the syndrome of the missing chromosome? It changed me, it may even define me, but it's something outside of myself. An external force outside of my control or my making that insinuates itself into every breath? Please no. I need a break, a place to talk about myself autonomously. Knitting? KNITTING!! But all the things I love about knitting are the separate parts of me all knotted together. Maybe that's THE reason I love knitting. The methodic unwinding of a single strand and weaving it into something useful, something with a name. A continuous line with a beginning and end, a clearly defined purpose. I love the different fibers, the endless use for things most people think are useless. Used up bamboo or sugar cane fiber can be transformed into the softest shining strand of glorious yarn. Even things like plastic bottles can be made into yarn. Cutting up old sheets or shirts and making yarn out of it. Plastic bags knit or crochet into hardy rugs, remaking our trash into something useful and with a purpose, a destiny. 
      And then there's that. That word; "Destiny". We toss it around to attribute meaning to things we can't explain. We joke and write movies about it, full of overly dramatic reason, like there's a puppet master pulling endless strings connected to everything. The strands of my yarn? We do have a destiny though, all the parts of us full of the potential to end up somewhere unique, somewhere no one else can ever really be because who else can be us? Who else raised parrots, rode horses, and broke their foot trying to stop a donkey attack, had twins, loved that one person to much, has a PWS kid, knits, and named all of her pets after Shakespearian characters? I can't write about only one thing, because I can't only BE one thing. 
      What I can do is promise not to focus on a narrow part of me. I will probably write a little bit about everything that's a part of me, but this wont be a blog about knitting, or being a special needs mom. Although I'll probably talk a bit about the former, and a lot about the later as they make up the majority of my yarn. But that's the beauty of life, all the colors of our stories, jumbled and tangled and knotted together. That's what I want to write about. How tangled jumbled messes become a beautiful life, the unexpected and terrifying becomes the new normal. 
    This is the story of The Impossible Girl.

A blog, a blog. My Kingdom for a Blog.

      For years I contemplated starting a blog; I though, oh, I'll remember all of these stories. Friends told me to write a book; I though, oh I can do that later! I even named my one day creation, it would have been "The Impossible Girl." So I went about my life, regularly thinking to myself, "there is no other name for my book!" And then the new season of Dr. Who came out. Oh! That darn clever Dr! I suppose that I can still use it, but it feels wrong now. So maybe it's time to start that blog thing. Then, in trying to start this blog, I discovered that someone else has a blog entitled "The Impossible Girl"! Well fiddlesticks.
      So here I am, writing my first blog, and it has a name no one will get. But we'll get there.


      You're probably thinking, "Who is this person?", "Why would I want to read what she says?", and "I wonder if that chicken in my fridge is still any good?" These are all good questions, and should be addressed immediately.
      First of all, I am an artist, a nature lover, a knitter & fiber crafter, an animal trainer, a theoretical minimalist (HA!), a single parent, a "green" freak (although I HATE the word "green", I think we should call it "traditionalist"), a bargain hunter, a friend, a parent of someone with Prader-Willi Syndrome, an advocate, a fighter, and mostly just really, really tired. Secondly, who wouldn't want to read what I have to say! Ok, ok, I get that guy at the grocery store who looks at me completely horrified that someone would have so many small people that belong to them, and that she lets them talk and learn things through experience (Keep their hands off of that, please!). And maybe that girl who thinks I'm crazy for cutting my own hair, and wearing clothing that I made or got second hand. But everyone else should! Thirdly, no, that chicken probably isn't any good, you should go smell it immediately. I'll wait.      Is it bad? If it is bad, I would recommend making bean and cheese burritos for dinner. That's what we're having tonight. Because the last few weeks are pretty high on the crazy-o-meter for us. My two big kids had a super nasty strain of Strep throat, both with fevers over 103, my daughters went up to 105 and landed us in the hospital. My smaller boy smashed his fingers in his bedroom window, my mom had food poisoning, and I insanely agreed to work 24 hours this coming weekend.
      Mostly I'm a person, like you. Who has experienced life, like you. And due to some unusual circumstances, I have a unique perspective, probably like you. But maybe my perspective can show you something you hadn't seen before. Likewise, maybe YOU can read my thoughts and words, and show me a perspective I haven't stood at before. I believe perspective is all positional. It depends on your position in life. I don't mean financial or political, although those do form a part of the stone and sand we stand on. I mean have you experienced death, or real love, have you lost a child, or lived a life where nothing really bad seems to happen to you? Experience shapes us, changes us. The ebb and flow of our lives and experience turn those changes into our perspective, our view of life, and right and wrong. I want to stand on my perspective, and see if I can look past it and see into the world, see from your perspective. I want to open my heart and be changed by the people of the world, not just my piece of stone in the world. So, I will start with sharing some of my experiences, some of my long held beliefs, and maybe, just maybe, someone will read it, share theirs with me, and we will both be changed.
    Basically, welcome to my Blog.

~Mila