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 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.
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.
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??"
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.
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