Roller Coaster

Yesterday was a roller coaster ride. At five in the morning, Gracie-Cat screamed bloody murder for no apparent reason, as she tends to do, and Erik promptly awoke two hours early, pooping his pants in the process. I heard his voice and winced, hoping he would return to sleep, but he was soon lying on his side on his bedroom floor, putting his lips to the space between the bottom of his door and the carpet and talking as loudly as he could about nothing in particular so I would hear he was awake and retrieve him. He still waits in his bedroom for one of us to open his door in the morning, and this is how he prefers to get our attention.

Erik has two settings: Unconscious and hyperactive. After I changed his diaper, he bolted from the room. I tried to get him to settle down and lie between us in bed. He even took off and returned with his baby blanket and Stinky Dog as if he had entertained the same thought, but he just couldn't lie still. He laughed and rolled around on the bed instead, enjoying our groans of pain as he elbowed us in the eyes and sternums, finally giving up on the idea of a quiet moment of family closeness. Instead, he ran off to play with his collection of monster trucks.

By the time I needed to go to the grocery store and think about working later in the afternoon, Erik was rubbing his eyes and morphing into the personality I fondly call Psycho Baby. We made it to the store, but he kept grabbing at my sleeve and looking at me intently, seeming to silently plead we go home. He is usually happiest at any store full of people, but he was obviously miserable. He even stopped saying hello. Red flag. I knew I was in trouble.

By the time we arrived home and I was attempting to put away my purchases, Erik was spinning completely out of control. I knew his blood sugar was dipping and he needed food, but he was really raging. I managed to get him in his chair, but he flailed at everything in his reach and kicked the underside of his table with his incredibly long legs, growling and screaming, "No!" He kicked me. He hit me. He slapped me. He refused anything I suggested. Even cookies. I reminded myself that he was horribly tired and frustrated and that losing my cool would only fuel the fire. However, after a morning of time out after time out and being assaulted repeatedly as I tried to soothe him during similar episodes, I was plain exhausted.

He continued to yell, flap his hands wildly, and kick, shaking the table. He was absolutely inconsolable. He had returned to that distant place he was once trapped in when he was tiny. The place my words do not reach. The place he can no longer feel my touch. That place that sucks him in and leaves behind an empty, child-shaped shell.

It was then that I snapped.

If molten lava could flow from my mouth at this point, it would have. I was filled with rage myself. I was furious at the universe. How much could one person take? I had enough. A four million decibel high-pitched, scratchy screech suddenly came from my lips. It didn't even sound like my voice. My head snapped around from where I stood in front of my neatly stacked rows of canned diced tomatoes, and I looked at my child who seemed to be channeling the devil himself.

"ERIK! THAT'S ENOUGH!"

His eyes widened in shock. Wider than I have ever seen them. My sweet boy was instantly present, pouring into his own body like liquid soul and pushing the raging thing I saw moments before far beneath the surface. His face reddened. His bottom lip swelled from his face, and hot teardrops began to fall on his crumpled, tortured placemat, which, amazingly, was still atop the table. The cry was silent for a moment, and then he wailed as if I had just profoundly injured him. I suppose I had done just that. I felt two inches tall.

I successfully pulled my baby back from the place he goes, but I didn't feel good about it. I wanted to cry, too. Instead, I went to him and held him until the tears stopped. It didn't take long. I whispered to him that I was sorry I scared him and that I loved him. I rubbed the bumpy line of his spine with the palm of my hand and put my face in his soft hair. He was easily soothed, and I began to offer him a bowl of fruit and some crackers with peanut butter. He quietly devoured them as if nothing had happened, and I picked up the phone to call Brian to confess what I had just done.

After Erik's three-hour nap after lunch, he was a new boy. We played and cuddled. We were alone in the house for the evening. I made a pizza and turned on the first Oregon State game. After dinner, I placed Erik in his bathtub and hauled the vacuum out from the closet. Erik begged me to put the vacuum away, but I was easily able to assure him that it wouldn't be too loud and used it five minutes at a time, checking on how he was doing with it, turning on the bathroom fan and closing two doors between us. He did fine. When the floors were vacuumed and mopped and there was nothing to do but sit on the couch, enjoy the game, and listen to the happy boy noises coming from the bathtub, I did. I talked to Erik as he played. I kept asking him if he wanted to get out, and he told me "just a little longer" or "five more minutes." I laughed and told him that was okay.

Erik then had another surprise that would instantly erase the ugliness of the day.

His bright voice said, "Mama!"

I replied, "Yeah, Erik? Are you ready to dry off?"

Erik repeated, "Mama!" He then giggled, like he had a secret.

"Yes, Erik?"

He said, "Mama! Mama! Mama! Mama!" He continued to chuckle.

I found myself giggling and asked, "Yes, Erik? What do you need?"

He said, "Come here, Mama."

Now my eyes became as big as saucers. I sat in absolute shock. I hadn't realized it before, but Erik has never in his almost four years asked me to "come here."

Not once.

I got up quickly and stood in the bathroom door. He smiled up at me and began to do a dorky little spin in the bathtub on his hands and knees. He was obiviously showing off, and he told me how fast he was. I hadn't realized it before, but he has never shown off for me. Not like this.

Not once.

It was a glorious moment of NORMAL. A smile spread over my face, and my heart ached at the same time. How could I feel happy and sad at this at one time? Seeing the pure joy on his face after such a trying day and realizing we had just reached another little milestone most people take for granted, though, I was pretty certain of one thing.

I was mostly happy.

Girl in the Bubble

I'm feeling discouraged this week about life in general. When I take a step back and look at everything, it doesn't appear horrible at all. I realize I don't have much to complain about. If only I could shake this feeling of gloom and doom. Yeah, my back hurts, but it's better, and my son certainly isn't in a wheelchair, so I don't have to lift him much. In fact, not being able to lift him as much is forcing me to get on his case to do things himself. I have to nag him constantly, but it's working here and there. I'm just sick to death of my own voice.

School ends soon, and I will have the summer with Erik. I feel a little sick to my stomach about this because I probably need to schedule some activities for him to do. Just the thought of that makes me exhausted and depressed. He's not ready for a formal program through parks and recreation yet, and I'm not up for that, anyway. I really don't want to haul him to a place that should be fun kicking and screaming like he does sometimes when we go to school. He just seems to hate being around other children. What am I supposed to do, then? When we do things with my friends' kids, I get depressed because he still shuts down. At least his tears are few these days. I laugh his quirks off and make light of things, but I feel absolutely rotten inside and then guilty for feeling rotten. He has never gone off to play with a child voluntarily. Other kids tend to run him over, and he definitely doesn't like the noises they make. All he wants to do is push his stroller all over the property for hours at a time. Alone. That's his dream day. I purchased a couple of sprinkler-type toys for him, and we will try those soon. They look like fun, but Erik isn't always on the same page as I am. In all fairness, not many people are.

Somebody told me recently that I don't have to worry because Erik is definitely not mentally retarded. I guess our geneticist was wrong. She also stated the fact that he is cute and looks "normal" will hide any disability that he has and make things easier. In other words, he doesn't look very retarded. While I appreciate where she was going with all of that, it has taken me years to accept the profound effects of WS on my son's body and brain, and I could care less about hiding anything. I suspect it's progressively apparent to strangers that something is different about him. I take him in to pick up work, and I'm sure they are beginning to figure it out. I'm really okay with that. Most people love his strange, loving ways, although they don't know the reason he is different. The only reason I steer clear of the topic around people who don't know is that I lack the energy or experience to provide a sufficient explanation. Sometimes I think a few people who know are more comfortable pushing things under the rug and making it go away. That doesn't help me much because I can't make it go away. I heard it before at the beginning of all of this, and it comforts me greatly now: He is who he is. I finally get it.

I just smile and keep my mouth shut a lot.

The fear of being trapped here at home still haunts me. I have several favorite mindless activities I do on a regular basis. However, no matter what I do, I feel like I am alone inside a thick-walled bubble. I'm less sad these days and more angry. I'm not sure where the anger comes from. It's a nebulous cloud of emotion that seems to have no set target. It doesn't rise to the surface much anymore, but when it does, it emerges like a spray of heavy, seething molten lava. It surprises me every time. I think, wow, I really am pretty pissed off. I don't really know why.

Worst of all, sometimes I still feel Erik and I are invisible, rising up in this giant bubble, caught by a swift breeze. We float silently over playgrounds, schools, and birthday parties, helplessly watching it all drift by below us. The sunlight makes the filmy walls imprisoning us sparkle brilliantly.

Nobody looks up, and we drift away unnoticed.

Of Course

You know you're old when the teenagers next door are having a rip-roaring party and you look at your husband and say, "How can they possibly have a decent conversation in that house with all of that racket?" Brian just walked up the lane to investigate. I told him to let them know I would either like them to turn the music up to a level where I can hear more than just bone-rattling bass or down to where I can't hear it at all. We were cool enough to wait until 10 o'clock to put in our request. I would go over and join them around their bonfire but fear some of the kids' litigation-happy parents or the fact I will look like the father who used to hang out with us in the dorms drinking beer and inevitably ended up sobbing, telling us that college would be the best years of our lives. Shudder.

I am a bit of a head case. I stood on the back porch today and screamed at the landscaping trucks from the business next door going light speed and sending up clouds of desert dust to drift through my open doors and windows. When they ignored me and my giant gestures, I only yelled louder, wishing I had taken a Spanish class instead of four years of French so I could curse accordingly.

Things have been going well this week. I have upped my workout regimen a notch and am feeling good. I am actually finally getting smaller with a major tweak in my diet and find myself fairly content emotionally with a new reserve of energy in the evenings. I was in the middle of my workout this morning when I realized Erik and I needed to be at the stables. After a light myocardial infarction, a quick shower, and a fresh coat of pink lipstick, we arrived just one minute late for our appointment. Erik insisted he would rather ride an ATV instead of Foxy-Horse, but he didn't have much of a choice today. As I pulled into the parking lot by the barn, I saw Ms. S, my "Earth Angel," and her little girl with Rett syndrome. Of course. God works in mysterious but less than subtle ways. We waved to each other, and I went to meet her inside the barn to chat. She informed me that the young woman helping lead Erik's horse today was actually the first cousin of Mary, the girl with WS that was mentioned in the editorial I recently posted. Of course. Apparently she saw WS in Erik's face the moment she saw him and asked questions about him. She thinks he looks just like Mary did when she was younger. As it turns out, Mary will be heading off to school back east in the fall. Ms. S informed me that Mary's mother knows about me and would like to speak with me, so I swallowed the lump in my throat and gave her my last name and phone number. Now I just wait for the call.

I'm very happy I am making connections here, and I have heard a lot about this woman lately that has alleviated my fears. I was reluctant to meet her at the beginning of this, but now I wonder if it's because she seems to be a lot like me. She is a shoot-straight-from-the-hip, tell-it-like-it-is sort of gal. Today was positive but still made me feel raw and vulnerable. That's not necessarily a bad thing, but I am glad that feeling is passing now that the sun has set. After all, it's a pretty intense way to feel for any extended period of time. My mother and I are headed to a fundraiser tomorrow for the little girl in town with 22Q13 syndrome. The party is exclusively for women, and flip-flops are mandatory to fit the "Flip Flops and Lemon Drops" theme. There will be a jazz trio, bartenders mixing up vodka lemon drops, five different fancy restaurants catering the event, mini-pedicures, and chair massages. I have to run to Macy's tomorrow to find some pretty but summer-casual attire, as I usually dress like a bit like an Amish woman, even during the summer.

Brian is now back from his mission next door. In a likely very half-hearted gesture of goodwill, I was apparently invited to drink beer around the bonfire with a small group of pubescent girls while 30 people do God-knows-what inside the house. I imagine that they would be more comfortable keeping an eye on at least one of us at all times so we don't ruin their little games. I noticed the scent of pungent but sweet smoke floating through my office window earlier, but that seems to have ceased now. At first, I told Brian that someone was burning garbage and voiced my concerns about the wind and dry grass. I finally identified the vaguely familiar scent and smacked my forehead with my palm. Of course.

Boy, I really am getting old.

Numbness.

There is a pale scar just above my pubic bone that marks the location of the incision doctors created the day Erik came into the world after nine disappointing hours of pathetic, inefficient labor. I witnessed my contractions enthusiastically spike on the monitor by my bed while the nurses flushed generous waves of Pitocin, a labor-stimulating drug, into my blood, but the pain never came. Eventually my baby grew tired and weak in my womb, and we were quickly wheeled to the operating room, where we were surrounded by masked, anonymous faces and my body was rocked with strange, involuntary shock-shudders.

After my baby's birth, my scar was punctuated with shiny staples. The nerves had been rudely severed and were no longer able to communicate with my brain.

Numb.

It was then that the baby on my chest began to cry. He cried and cried for months with no end, and that numbness spread throughout my entire body via each tiny, exhausted capillary. There were no coos or smiles from this baby. He drank from me, cried, and slept. I cried, too. When I dared to look down into his scarlet, suffering face, I was horrified. I felt absolutely nothing at all.

The numbness was complete.

As many months came and went, our lives changed. The crying subsided. One day without warning, a smile appeared like an upside-down rainbow. A tiny, beautiful promise of more.

And there was indeed much more to come.

The scar on my body is barely visible now. It has healed more efficently than any of my previous scars have and threatens to disappear entirely, which, quite honestly, makes me a little sad. I'm proud of that scar because it reminds me of the very beginning of this journey. It reminds me of the very last day I was filled with the innocence that will never return and the very first day I met someone who would forever change life as I knew it. Someone who would eventually teach me what it means to feel each experience in this life.

It's amazing.

Today when I run my fingers over that scar, the numbness is completely gone.

Diary of a Madwoman

Random Thought of the Day: Is it just me, or does it seem like the string of random letters required for word verification to comment in Blogger gets longer every day? It feels like some sort of twisted sobriety/typing test.

I can't believe I'm up to over 200 posts now.

I have been conscious since about 2:30 a.m. and upright since about 4 a.m. I'm not complaining (much), however, because I slept without the use of Unisom now for many nights in a row. My work partner leaves town for a couple of days today, and I suspect that has a lot to do with my insomnia. I tried to cuddle with Gracie-Cat, but she insisted on putting her narrow buttocks in my face, which did not render me as relaxed as I had originally planned.

I don't promise much of importance to report today but wanted to let everybody know how much I appreciate your recent comments, phone calls, thoughts, and prayers. I received e-mails that have made me laugh until I hurt and touched my heart at the same time. You seem to know exactly how to make me smile. In addition, I always appreciate your comments here. I even received an e-mail from another WS mother in the next state who is even more geographically isolated than we are.

I hope you understand that this is the place I sometimes dump my deepest, darkest thoughts and that I do not ruminate 24-7 on Williams syndrome, although it is perpetually on my mind at some level. I experienced a real emotional crash lately, and I am doing the best I can to pull out of it. Thanks, Kim, for your last post. There are times I wonder how brilliant it is to be spilling my guts anywhere anymore and making myself so incredibly vulnerable, but because I have received such encouraging feedback, I continue to do so. Looking back at what I have written has been an incredible experience for me. I can see that I am doing better than I ever thought I would. So is Erik!

Erik is into everything these days. Being told "no" seems to wound him almost physically, yet he pushes his boundaries daily by getting into things he knows are off-limits and tortures himself with my reactions anyway. He is still in his crib (a.k.a. pediatric mosh pit), which is now falling apart from his nightly thrashing about. He refuses to eat the majority of my cooking and seems to live on peanut butter and jelly sandwiches, cottage cheese, fruit, crackers, and cheese. I can get him to eat peas occasionally, but he generally hates vegetables. He has eaten two containers of strawberries in about four days, and I bought a BUCKET full of an obscene amount of cottage cheese at the store because he plows through it in no time. He would live on just ice cream if I let him. He is now saying three words together on occasion, such as, "Here comes car," although this is still infrequent. He prefers to use two-word combinations most of the time. He pushes his dump truck down the driveway at light speed, and I am thankful we do not live closer to the road. He is still wearing orthotics, although I no longer require him to wear them for every waking hour. There are still days when he seems to understand nothing I say for hours at a time. Those days are difficult. He is physically active now, but the lights don't always seem to be on. Instead, he constantly echoes the last word that comes out of my mouth. However, the majority of the time he seems bright and alert. I think he understands more than he lets on and is sometimes simply too busy to provide me the constant reassurance I require from him at times.

I still feel painfully excluded when I hear other mothers talking about their children. Even if I successfully contribute to the conversation, I feel like I'm telling the lie of all lies and that I don't really count somehow as a normal mother. This is a very simplistic explanation of a very complex rush of emotions, of course. Yes, I am fully aware of how I should feel. However, knowing how one should feel doesn't automatically produce that feeling. I feel what I feel. As time goes on, there is the promise of more similarities between Erik and other children, so I hope this passes eventually. I am not going to hold my breath, though. I suspect I will always feel a little different and awkward. After all, awkward is one feeling I am quite familiar with, even before I had a child. It's hard when people are unaware of my son's syndrome because that future moment in time in which they find out hangs overhead like a heavy cloud, waiting to release gallons of raindrops on everyone in earshot. I detest the look I see in their eyes at that very moment, although I have yet to hear an unkind word. I end up feeling like a genuine killjoy/party pooper, and if I try to turn things around and be less emotional, I sound cold and un-Nancylike. As I have said before, I'm not comfortable telling others yet because I don't have a good script. I am confident that will come with time. For now, I remain uncomfortable either way but mostly when I "don't know if they know" or "know they don't know." Awkward. If things fail to change, perhaps I will just learn to care less. Just a thought. That has happened already to some degree.

So, life grinds on. I am looking forward to seeing my nephews in a week and watching Erik's face when they come through the door. He was quite happy to see them last October. There is much to look forward to in the next week, and I am savoring that feeling!

P.S. I'm all for starting a WS cult/commune.