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.

Melancholy Milestone

I'm feeling melancholy today. I managed to tint my hair Havana Brown today in order to look a little less geriatric before next weekend's 5K walk/run but have not moved far from the security of the couch. After a few hours of typing bone scans in my bathrobe this morning, any motivation I had once is long gone. When I went to check on Erik, who didn't seem to be settling down for his nap late into the morning hours, I found a complete disaster zone. Erik was standing tall in his crib, proudly looking down at an initially unidentifiable pile of fluffy debris. On closer examination, I recognized it as handfuls of material torn from the innards of his crib mattress, liberated by thick, brutal toddler hands (poor muscle tone, my foot). I called Brian in to survey the damage and make a final declaration regarding the appropriate disaster measures. He agreed we had a four-alarm state of emergency. We nodded at each other and looked down at the crib, which was being held together in one place by a golf tee strategically crammed tightly in a hole where some sort of metal fastener used to be at one time. We decided it was time to say goodbye to this particular piece of furniture.

As the walls of the crib were dismantled and taken away to the attic, I lit the Yankee candle nearby that my sister-in-law gave me long ago as part of a baby shower gift. Over the last two and one-half years, I have very rarely lit this particular candle in order to make it last. The fresh scent of baby powder began to waft up from the pool of wax forming around the wick like a hot moat. I breathed it deep into my lungs and squeezed my eyes shut. There is not much of this candle left, and I hate to burn it, as Yankee no longer manufactures this wonderful scent. However, a baby powder-scented candle suddenly seems ridiculous in this lanky, ruddy-cheeked boy's room.

I will burn it tonight until it's gone.

One Year Anniversary

She was no longer wrestling with the grief but could sit down with it as a lasting companion and make it a sharer in her thoughts.

~George Eliot

I woke up expecting to feel a mix of emotions. Strangely, I can't say this is truly the case. I am expecting anything today emotionally, but right now I feel something new in my heart.

One year ago we heard terrible news, but life has gone on. At the moment, the coffee pot is sputtering in the kitchen and I am watching the baby monitor on my desk for scarlet flickers. My son is sleeping soundly in his crib, and my husband searches for something to wear to work. If I were a stranger peering through the windows of this house now, I would think that nothing horrible ever happened at all. Our faces are relaxed, and everything is quiet.

However, we have been at war. We have endured excruciating heartache. I was frequently and unfairly tackled by stabbing grief on sunlit days that originally looked promising to me. Being weak, I broke each time but found that in the end it only fueled my fight. I had no idea that day one year ago how difficult this would be not only on ourselves, but on the people surrounding us. As the last couple months have passed and my focus has shifted, I have finally turned my face up to see the devastating pain my friends and family will carry with them forever as well. A bomb detonated in our family, but everyone in its reach was savagely wounded.

I thank God for the miracle of healing. One year ago I had difficulty feeling like I could simply physically get enough air. I had my first panic attack. One particular evening the week after the diagnosis I sat at the kitchen table trying to eat dinner and was completely unable to stop crying long enough to take a bite and simply swallow food. I felt horribly pathetic and lost.

In one year my dreams have changed. The visions of chunky, twisting, clown-colored ropes of DNA are less frequent. I no longer dream of Erik doing amazing things and wake up to discover they were cruel lies my brain manufactured. They were devastating, but, again, they became just more fuel for the fight.

Most of all, the best part of being one year out is that when I wake up, I don't have to listen to my brain report the bad news to my ignorant heart over and over anymore. That was honestly the worst part of this whole experience. I relived the pain each day as if it was brand new for months. My body and brain now have the facts permanently infused in them, whether I am awake or not. Before I open my eyes each morning, I am already cognizant that Williams syndrome is forever present in our lives, and it is old news. I am no longer destroyed each morning I meet a new day. I no longer am obligated to lose the first battle of the day.

Today's fight --

Nancy: 1
Williams syndrome: 0

So there. Go to hell, WS. Now where's my coffee?

In summary, I have learned there will always be grief, but I am no longer physically suffocated by it. This particular flavor of grief no longer has the extraordinary power it once did over me. I have learned how to harness it and make it my fuel. I no longer fear its bilious taste.

So what do I feel in my heart today? Something I never expected to feel.

Peace. Confidence. Most surprisingly of all, I feel joy.

I MADE IT.