Life Goes On

Ob-la-di, ob-la-da,
Life goes on, brah
La la how the life goes on
Ob-la-di, ob-la-da
Life goes on, brah
La la how the life goes on

-- "Ob-La-Di, Ob-La-Da" (The Beatles)

We had yet another dentist appointment yesterday. I have been there so often that I feel like I should at least have my own coffee cup in the employee lounge. When we were first scheduled for what they call "fun visits" months ago, I was a complete skeptic. It seemed that for months Erik's anxiety about the dentist was only intensifying. Smack dab in the middle of the process, the wall of gleaming teeth that was Dr. Mike retired and was replaced by a comely 12-year-old named Dr. Brent, which only served to sour my attitude further. In the end, though, the efforts that originally seemed futile have actually worked wonders. Color me surprised.

Yesterday after Erik and Stinky-Dog rode the orange examination chair like a lame mechanical bull, Erik was allowed to play with the suction tube, which he considers one of his beloved vacuums. He ran it over Stinky-Dog's scruffy face and flaccid body, and the stuffed animal chuckled and begged Erik to stop in his throaty, pack-a-day grumble. By the time Dr. Brent joined us in the room, Erik easily opened his mouth wide for the first time and demonstrated that his teeth were completely free of cavities. I was informed that our brushing techniques were obviously much more effective than the ones typical children used on their own teeth (I allowed myself to feel a little smug, as this feeling is rare and quite precious). Erik even allowed a nasty-tasting fluoride solution to be swabbed over his teeth with a brush and successfully vacuumed out the excess on his own with the suction tube for the very first time, seeming to enjoy the juicy sound of it. He was rewarded with two balloons and a brief session of stimming/spinning on the wheels of the toys in the waiting room, where I discovered a Ms. Pac Man machine. Score.

This summer has been one of change. I have made some difficult decisions regarding my personal life and am striving to be a better friend, daughter, sister, aunt, mother, and wife. I desire to feel more connected with the outside world again and have sought help to sort things out. I was amazed at how intensely the emotions I felt a few years ago easily bubbled to the surface like new when I described my experiences out loud. Today I meet a part of my father's biological family that my parents recently discovered through their research over the years. From what I have heard, they are amazing. Ironically, I lost my grandmother last week, who was a very large part of my childhood. Our relationship over the past few years has been difficult, but her love for Erik seemed to smooth things over and brought us together one last time, which happened to be the day before she passed away. I have come to believe that one of Erik's jobs here on earth is to bridge the sometimes incredibly profound gaps between the people around him, and he is an absolute expert at it, even at the ripe old age of 4.

Today we attend our last IFSP (IEPs begin next year). We are hoping to say goodbye to diapers this year and are excited to witness more of the progress he has shown us every year.

Another Brick in the Wall

I'm having a pretty serious bout of depression again. As I have written before, it cycles in and out of my life. I can usually feel it coming. It always passes, but it takes a little time. It seems to be mostly endogenous, not really a direct result of what's going on in my life at the moment, although certain situations can intensify things. I have barely been able to function for the last few days. I can't concentrate, and my child is becoming bored due to my recent lack of creativity, despite my attempt at outings to see friends or to play at the park. I have been trying to hold on this week, knowing Erik will attend vacation Bible school Monday. The heat is not helping me at all. After the coolness of morning is absorbed by the dry, heated air of the day, I'm spent.

Today I looked over at Erik and told him that we were going out for a while on an "adventure" to the store. I apologized to him for my lack of motivation and the fact I hadn't been a very good mother for the past couple of days. Truthfully, he hasn't seemed to really absorb much of what I say out loud in the past. Besides, I talk to myself quite often, and he has (understandably) learned to tune me out at times. In this case, I wasn't really expecting an answer at all.

He stopped in his tracks, turned to look at me, and smiled sweetly.

He said, "No, you are a good mom!"

He crawled up in my lap and cuddled with me. My eyes watered. It seemed like such a strange thing to say in the middle of his odd, made-up game he was intent on playing alone. In fact, his statement sounded foreign to me with the perfect intonation an adult would tend to use. He seemed to be channeling someone else, as I sometimes suspect he does.

He then looked up at me and said, "Hey, Mom, I have to go potty."

I almost fell over.

"Really?"

He answered that he did. He has never told me this before. He followed me to the bathroom and allowed me to assist him without any fuss at all. I sat on the edge of the bathtub next to him and continued chatting with him as he successfully used the toilet. I tried to contain my excitement.

I said, "Yeah, I do love you an awful lot. I try to take really good care of you."

He smiled and replied, "Yeah. You take care of me when I am spitting orange."

Again, I was amazed. The first time he remembers throwing up was after he had eaten some segments of an orange, which came up all over his hands and the toy truck he was holding at the time. Therefore, he refers to vomiting as "spitting orange." He also apparently remembers that I was there holding him while he was violently ill, stroking his hair and putting my cheek against his clammy forehead. The way he smiled telling me this made it appear as if he were relating a fond memory of a vacation or a visit to a dear relative, not violently upchucking the contents of his stomach. Strangely, it seemed to be a pleasant memory for him.

On days like today, a brick in that awful, dark wall between us crumbles without warning, and one more shaft of sunlight spikes into my world. I live for moments like this, and it seems they come when I need them the most.

Erik seems to see and hear things other children don't. These strange things in his own world interfere with what he would typically understand or learn. However, what's important is that there is no longer any doubt in my mind that he remembers all of the little things I do for him because I love him.

And that he loves me right back.

Slosh

Those who do not know how to weep with their whole heart don't know how to laugh either. -- Golda Meir

Tonight I sit here with tears streaming down my face. It has been a rewarding day, but it didn't end well, and I'm just too raw to keep my emotions inside. A child in the WS community died this week, which always throws me off balance for an undetermined amount of time, Erik is having his awful stomach problems while I am trying to toilet train him, and I am not adjusting to the lull of summer very gracefully. I feel like I live a perfectly happy and successful life but that I am required to do it with an ruthless, ongoing intensity that places my emotions just beneath the surface. That's where the numbness I have mentioned keeps things in check. I have learned to keep this hidden and even fool myself into thinking the lake of sloppy emotion isn't threatening to spill at any time, but it sometimes sloshes and takes me by complete surprise.

Today I took Erik to pick up lunch at Subway. As we waited for his sandwich to be made, the overhead speakers began to thump with the 1986 OMD song "If You Leave." One of my favorites. I grabbed Erik's hands and danced with him in line, swaying back and forth with the music. The women preparing Erik's food were charmed by his smiling face underneath the brim of his baseball cap, and we danced our way to the front of the line, where we accepted a small plastic bag containing Erik's meal. We then made our way out into the blinding sunlight.

We arrived at our local playground just as the school district began serving free lunches to children in need. I gripped the steering wheel, squinted at the melee, and sighed. This meant the park was clogged with children. Lines of parents stretched out in front of two stainless steel refrigerators on wheels at the edge of the playground. In the past, I would have turned around, but I had previously made a promise to Erik about going to this particular park. I have nearly forgotten the days of cruising parks in town to find ones without children playing in them because of Erik's sensitive hearing. Those days are gone. Miraculously, a parking space opened up before us, and I had our things unloaded in no time.

In our community, the senior center abuts a large playground full of children. This is brilliant, if you ask me, as different generations can mingle together. Erik and I walked away from the chaos and chose a quiet, shaded picnic table toward the senior center. A gray-haired man rudely and enthusiastically revved the engine of a brand new Ford Mustang with racing stripes in the parking lot, and the people walking out of the building laughed. Erik looked up at the shelter we sat under to shade us from the sun in amazement. He said, "Oh wow. This is a nice house."

We were soon joined by another elderly couple at the next table. She opened a pack and spread out a red and white checked tablecloth. On it she placed fancy wine goblets, fat sandwiches encased in plastic wrap, and a miniature bottle of wine.

A pair of frail-looking women tottered down the sidewalk towards our area. They seemed to be holding onto each other for dear life. They chose another nearby table and opened another pack containing food, including half cans of A&W root beer and goldfish crackers. Erik grinned at them all, muttering the nonsense phrases he considers charming but that nobody else can come close to understanding. Sometimes I wonder if he slurs these made-up things just enough that people find themselves leaning closer to him. It wouldn't surprise me.

One of the women was very chatty. We consumed our meals, and I enjoyed her questions and comments, some of which made me laugh ("What's the deal with that vitamin water they are selling, anyway?"). When we were finished, I helped Erik dismount the awkward bench of the heavy picnic table, and I asked him to say goodbye to our companions, which he did. I threw our garbage in a tall, round can nearby, and Erik stood on his toes to try to spot where it all went. I had to pry him from it in order to begin our trip back up the sidewalk to where a sea of kids churned all over the play equipment.

Erik asked to try the slide for babies. The playground is divided into three areas appropriate for different age groups. We started with the area for young children and worked our way up successfully for the first time with no protests from Erik. He climbed over each structure completely independently while I sat soaking up sun through a layer of SPF 45 moisturizer nearby.

This is a major accomplishment for us both.

At the final play area featuring a maze of bridges, elevated walkways, and one steep slide, a group of seemingly gigantic, obnoxious boys camped underneath Erik's favorite rock climbing wall and screeched, playing some made-up game, hurling insults at each other, and occasionally accidentally kicking each other in the face, much to my delight. I could not even begin to accurately guess their ages. A large boy rode a skateboard down the slide, making the massive structure shake. Two small children glided by on scooters. Erik began to lurch for the wheels, and I said, "Erik! Not yours!" He looked at me with complete understanding and acceptance in his eyes and moved on to an elevated walkway over the soft playground surface. He gripped onto the railing with both hands and gingerly took step after sideways step, slowly making it all the way across the unfamiliar surface, simultaneously greeting the children who passed by. He then ascended a flight of stairs and found the top of the slide, sitting on his bottom and sliding back down to me.

My heart swelled with pride.

The boys' screeching only intensified. Erik's hands suddenly flew to his ears, and he stopped in his tracks, but he never once looked back at me. The children sprinted by him at their frenzied pace, and he simply stood still in the sunshine, looking like a frail creature from another planet observing another culture steeped in an inhospitable atmosphere. I quickly climbed up the structure and stood behind him, placing my palm over his chest to assure him I was there, although he didn't really need it. If anything, I was the one who felt like an alien. I really wanted to touch him and feel anchored to the planet again. As I felt his heart beat under my hand, I winced at the familiar, brief stings of anger and despair before they faded deep under my ribs. The sudden, stabbing pain caused my eyes to water, but any tears dried before they could spill from behind the dark lenses of my glasses. And then things were fine again.

I said, "Wow, those kids are pretty darn loud."

Erik was in full agreement.

He then came out of his frozen stance and began to move again. Children approached him and asked him questions. When he didn't respond, they looked slightly confused but in the end didn't seem to care. I bridged the gap between them and asked Erik to attempt what they were doing on the play structure, making them feel important and easing Erik's anxiety in the process.

I'm no rookie anymore.

We ended the afternoon hand in hand walking back to the car. I asked questions about what we had seen, and Erik seemed satisfied. We agreed that we both had a great time.

Tonight I asked Erik if he wanted me to turn on his CD player to listen to music. For a couple of months now, he has been telling us no. I finally concluded that something wasn't right. I suggested some songs, and he finally agreed on a CD to play. I thought that it was odd a child, especially with WS, would not want music for this many days in a row. Erik adores music. He seems to feel it physically.

Erik's CD player is tired. I purchased it before he was born to put in his perfect nursery to play perfect lullabies to a perfect baby. It has never really worked very well, which, at this point, is no freaking surprise. I have to laugh about this. These days I have to do what my best friend calls "percussive maintenance" to get it to start. With a mere few taps using the soft side of my fist on one speaker, the music usually plays. I have done this many times.

I placed the CD in the thing and snapped the lid shut. The machine very quietly clicked and whirred, desperately trying to locate a track to play.

Nothing.

I began the rapping on it, listening for the sound of success. Instead, I heard a strange, frightened wail begin behind me. When I turned to look at Erik in his bed, his face was bright red, and tears were streaming down his cheeks. Where the skin on his scarlet face was creased, it was blanching pure white.

"No music, Mommy! Turn it off! I don't want it!"

He continued to beg me to make it stop, even though the music had begun and sounded fine. I felt like the worst mother in the world for ruining this thing that he formerly enjoyed so much in the safety of his room. How a child could survive an afternoon of the world's loudest, worst-behaved children at a playground and then shrink in terror at the sound of an electronic device whirring and my hand slapping against a piece of plastic was a mystery and caught me completely off guard. I frantically stabbed at the stop button before I ran to him and held him in my arms as he continued to cry. I promised I would throw the stupid CD player away and find him a new one as soon as I could. I told him that I was so very sorry. As I hugged him tight, the tears I had fought earlier finally spilled and streamed down my face. I hid them from Erik, but I could tell there would be many more, so I kissed him on the forehead and got up, tucking Stinky-Dog in his arms, which he was too upset to acknowledge. He seemed to be in a glassed-over, anxious trance. He was red faced, sweaty, and solemn when I shut his door for the night.

Life is good, but the intensity seems to follow me everywhere. And once in a while it turns me into a blubbering heap.

Rainbows

The weather has been stormy. Each day brings thunder and lightning like I have never seen here before. Our gravel road is sinking under a large, muddy lake, and our lawn is soggy and turning a deep golf course green. Every time I step outside, small animals scurry out from underneath the boards of the porch, no matter how many times I try to tell them they are just fine where they are.

Yesterday there was a break in the clouds, and the sun emerged. Even the wind seemed to take a break. Erik and I hurried outside after lunch, shedding layers of the extra clothing I initially put us both in. He asked me to blow bubbles, which I did until I was dizzy from lack of oxygen. The bubbles floated in front of us in batches, gleaming in the sunshine, and then drifted straight up against a patch of bright blue sky. Finally, I got back up on the porch and settled into a chair. I set the bottle of bubbles down on the porch and watched Erik navigate the stairs up to get to where I was resting. Lately he has been crashing into everything, even without his leg braces on. He sometimes reminds me of a baby deer trying to stand. He is growing so quickly that he seems to be adjusting to his own frame yet again. At times, he will even topple over from a standing position.

He clomped over to my chair and kicked over the bottle of bubbles, despite the stand my father made to encase them and keep them upright. After changing dirty diapers all day because of his sensitive gut, I heard my voice take on a harsher tone. I explained to Erik that his bubbles were gone and that he needed to be more careful with his things. He quickly stooped down and tried to dip his bubble wand inside the bottle to assure me there was still some remaining, but there wasn't. I told him that when he accidentally made a mess, he should apologize and help clean up. He looked into my eyes and lifted one of his feet up into the air. He then brought the sole of his shoe down in the center of the slimy puddle, sending out a spray of greasy droplets. I shot up from where I was sitting, angrily hosed off the porch, and ushered him inside, stating that we were through. I couldn't decide which was worse -- not knowing what my child understood or witnessing the deliberate defiance I would have given my right arm for a mere three years ago. Both were beyond frustrating. There are some days when the little things make me completely exhausted.

About ten minutes passed, and Erik seemed to have entirely forgotten about the incident. He was happily sitting in front of the washing machine's plastic porthole, watching our towels tumble in the soapy water. As I made my way by him with a pile of dry laundry in the crook of my arm, I placed my free hand on top of his head and told him that I loved him. He turned his face up to me and smiled.

He said, "Mommy, I'm sorry I spilled."

I kneeled down and wrapped my arms around him, inhaling the familiar, warm scent of his hair. I thanked him and told him that it was okay. And for that moment, everything was really, truly okay.

Patience

Don't worry, Mommy. Be patient.

-- Erik Quinn (June 5, 2009)

Erik is now allowing me to lead him to the bathroom and lift him up onto the toilet after he gets up some mornings. This occasionally requires me to sing, dance, and basically perform the world's dorkiest one-woman show, but the results are more than promising. If there's one thing I have learned about WS, it's that distraction is sometimes key while performing difficult tasks like this, as it wards off cranky fits. He has resisted the whole toilet training process with gusto up to this point.

He remains relatively passive in many activities of daily living, and this is no exception. His balance is not dependable, and his motor skills are lacking, making toileting extremely difficult for him. However, he will aim to avoid making a mess, flush the toilet once I lift him off of it, and place his hands in the sink to allow me to wash them. Strangely, he doesn't seem to understand how to perform the motion of rubbing both hands together to get them clean, although he moves his fingers around in the air a bit and attempts to go through the motions he knows he is supposed to do. No amount of coaxing, teaching, or encouragement seems to bring things like this into his realm of understanding, although I go through the motions I am expected to as a parent as well, hoping it will sink in. Only time seems to bring resolution to some of his most basic challenges.

In the meantime, I watch other children his age or younger use the bathroom completely independently, including easily manipulating their clothing. As the children around us grow, I realize how far we have yet to go.

I try not to let it get to me. I really do.

I am an expert at changing diapers now, as I have been doing this for almost five years. I would be lying, though, if I said that doing this isn't horribly depressing. It is for this reason that the little steps we take forward are very rewarding indeed. We will get there with time.

It all comes down to being patient.

Down

I'm feeling discouraged today. Parks and rec called today and informed me that the art class I wanted was full but that there was one available at the same time as Erik's vacation Bible school. I am on a waiting list for another class but do not expect to get in. If I do, I won't have the support of my fellow special needs mother, which scares me more than a little bit. I don't think I'm ready for braving our first tiny attempt at mainstreaming on my own. Yeah, it's just a stupid art class. But it's our first stupid art class with typical children outside the comfort of our special education bubble, and I know myself well enough to know how I will feel afterwards. It's a really big deal.

I should be thankful I had the guts to do something new and leave it at that. Tomorrow I plan on being thankful. Today I just feel discouraged.

The Gift of the Present

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.

-- Buddha

Erik and I are making some serious progress these days in many ways. I hope that the people who come here, especially the quiet observers, can see the contrast between the past and present in my writing. At one point, I was actually living each hour at a time. Seriously. I'm not kidding. It was THAT bad.

When Erik first came home, I remember washing and folding his little baby clothes I received at my baby shower. Of course, most of them had to be set aside because he could only wear preemie sizes. The colorful outfits and ensembles I had unwrapped just had to wait. I had only one outfit that he could wear, so my mother sewed some little sleep gowns in cheerful fabric for him as well. I remember looking at the clothing in the next sizes up and wishing I could time travel to the point he would be wearing those little overalls and t-shirts. A time when he would be walking just before his first birthday. A time when I would feel like the mothers around me seemed to feel. A time when everything would be okay. Of course, things would turn out much differently. His diagnosis was still well over a year away. I hid it as much as I could, but I wasn't having any fun at all. Something wasn't right, and I assumed it was within myself. It was like being in the middle of a bad dream. I kept trying to talk to others about my feelings without sounding crazy. I was told I was either in the midst of postpartum depression or received a knowing laugh because I was just having a hard time with the normal stuff everybody goes through. That made me feel worse. In my heart, I felt nothing but despair. I even felt next to nothing for my new baby, although I knew how I should feel and was waiting expectantly for those feelings to come. I was going through the motions. Don't get me wrong -- I knew I had an important job to do, and I didn't question that for one single moment. I would be a good mother, do or die.

I just wondered if perhaps I would actually die doing it.

Yeah, it was THAT bad.

We have been through the ringer for the past four years. If I stop and think about it, being Erik's mother is more difficult than I ever could have imagined. For this reason, I just don't stop to think about it much unless I am writing here. That is why I still come here. There is a special kind of buzzing numbness that has set in for me after some time that allows me to complete my activities of daily living caring for my child with special needs. When this first washed over me, I couldn't feel much of anything at all. Now, however, I can easily feel selected emotions through it. I enjoy life from inside this thick bubble that surrounds me and protects my injured heart with a strange ansthesia that used to feel like a state of shock but is now quite familiar and useful to me. This is something I never needed or even knew about before but keeps me from shutting my front door and collapsing in a heap behind it every day. It's a blessing, but I am a little sad that I will always remain almost completely numb in places. At the beginning of this, I watched other WS parents live life seemingly so easily and wondered how they did it. Now I understand. It isn't easy at all, but it's definitely possible.

Erik is now a lanky, beautiful boy. His shining, blond hair is darkening to the color mine used to be. His strange, animal cries of distress in the night ceased long ago. The colorful sleep gowns and baby blue preemie outfit have been sealed in a box and seem like part of ancient history, like part of the most twisted museum exhibit ever. His development has taken another giant leap lately, which has allowed me to count my blessings once again (hence this post).

I am able to have real conversations with Erik. I don't have to look into his eyes and wonder what it is he needs or wants. I can just ask him. The answer is usually related to chocolate or playing outside. I asked him this morning if he would like socks on his feet, which regularly bleed due to his thin skin, and he answered, "Actually, maybe some other time." He rides his tricycle with ease and can eat like a lumberjack with the help of reflux medication, which I really don't give a second thought about anymore. His sense of humor is like mine, which tickles me to no end. Sometimes we both look at each other and laugh at something without exchanging any words at all. He is no longer a strange, fragile creature that wails nonstop and doesn't look at me directly. We have a real connection now. When he asks to cuddle and our noses touch lightly, I can see right into him through his lacy, blue eyes. He has a beautiful soul and seems to know mine quite well, too. His "disability" allows him to sense how I am feeling, no matter how hard I try to conceal my emotions from him.

These days when I fold clothes, I ache a little when I put the ones that have gotten small to the side. I don't wish the future would roll in faster anymore. Although I am hopeful, what's to come is too frightening and overwhelming to take in at once, so I don't look too far ahead and take a few days at a time. Besides, I'm much too focused on the child I have at this present moment. The one who amazes me every day with what he accomplishes, despite the fact things are sometimes a thousand times harder for him than they are for other children. Don't get me wrong -- we still have massive challenges. We still have really bad days.

However, my heart is in the game now.

Dream Date

Everything's gonna be all right!
So, woman, no cry;
No - no, woman - woman, no cry.
Woman, little sister, don't shed no tears;
No, woman, no cry.

-- "No Woman No Cry" (Bob Marley)

I had a great day with Erik.

He has been feeling better now since a trip over the mountain to see my grandmother Saturday. When I went in to greet him this morning, he was so distracted by the ominous presence of Gracie-Cat just outside his door that forgot to refuse to let me take him into the bathroom and place him on the commode, which he then used as if he had been completely potty trained for years. Usually, his borderline violent protests make any sort of potty-related activity completely impossible. He asked for waffles and ate two of them before allowing me to work out on the treadmill and shower while he watched his favorite shows (Super Why and Sesame Street). After that, he asked if we could go to the playground. It was a perfect morning for that kind of thing, and I decided we had better get out while it was still a little cooler. The filthy house could wait.

We went across town to a park we don't usually visit. It's near the trendy shopping district and a group of expensive homes and condos perched on a rocky bluff overlooking the river. A couple mothers stood in the shade next to double strollers, bottles of sunscreen sprays, and an array of interesting snacks in clear plastic bags. They smiled at me, and I smiled back.

Erik wore his AFOs today. I have been pretty bad about employing them lately, but his rapid growth has made his Achilles so tight that I have been forcing myself to strap them on him, even in the heat. However, I regretted putting them on as soon as we got out of the Jeep at the park and he began moving as if he had segments of stovepipe over each leg. He didn't seem to mind, though. We passed the fence and entered the play area, which was only being used by a handful of children. Erik walked stiffly up the ramps to a surface riddled with small holes and then held onto the railing for dear life with both hands, shuffling his feet forward until he could adapt to his new surroundings and determine the stability of the surfaces he seemed to have trouble visualizing. I walked before him over a little bridge and stomped my feet to show him how to feel things out. I could feel the other mothers' eyes on me. I suddenly felt a little like a mother bird teaching her hatchling how to fly. He stomped along behind me, and we made our way to the top with only one little fall temporarily shaking his confidence. We stopped to watch the traffic glide by, and he greeted each vehicle with a hoarse, hearty, "Hello, motorcycle!" or "Hello, car!" He was most thrilled by the deafening equipment two men in orange vests operated nearby on the grass, including a weed trimmer, a riding lawn mower, and a leaf blower. I sat to let the sun bake my nearly bare feet and shins and enjoyed the look of the dark green tops of the pines in the distance against a postcard blue sky. The birds sang, the lawn maintenance equipment farted in the distance, and everything seemed to hum in unison, making air feel almost electric. After Erik was finished observing the world from our lofty perch, he sat down on his bottom and took the slide to the blond-colored wood chips below. He found a steep set of metal stairs and informed me he wanted to climb them. After my encouragement and a slightly shaky start, he mastered them. He even seemed to listen to me when I suggested holding on differently. We were completely in sync. He continued to explore everything, and, amazingly, I was able to sit close by, relax, and watch him play fairly independently for the very first time. Once the sun rose high in the sky, dark, linear shadows of metal railings cast themselves over the surface of the ramp we previously took. Erik froze in his tracks, seemingly unable to see where to step. I asked him if the shadows were freaking him out, and he answered that they were. I offered my hand to him, which he gripped tightly, and we stomped together back to the top through the shadows. We passed one of the put-together mothers, who was now holding a chubby, drooling infant wearing a frilly sun hat in her arms, and she said, "Boy, the ramps and things here seem to be really good for him."

I didn't really know what to say.

For once, I wasn't thinking about physical therapy, really. We were just in our normal, perfect little world, set apart from everything and everyone else. I prefer it that way at the playground, which is a difficult place for me to be. This woman's voice snapped me out of my trance, and everything around us seemed to crash into me. I can't remember if anything came out of my mouth in return or not. This was a first. I have never had a stranger comment on anything except perhaps about how cute Erik is. I felt defensive and slightly confused. She certainly didn't seem to mean anything negative, but I felt slightly off balance. I smiled, nodded, and continued up the ramp.

And then I saw her son running in front of us in the sunshine.

Hooked over each ear were bulky pieces of grayish plastic with wires snaking from them to spots on the back of his skull. They looked to me like they could be cochlear implants for deafness, but I couldn't be certain, as I know next to nothing about this kind of thing. Suddenly, Erik's plastic leg braces didn't seem so obvious or strange after all. I took a deep breath and exhaled the last of my defensiveness into the humming atmosphere, attempting to absorb the energy around us even more for the reservoir of strength that I need to dip into from time to time.

When we left the park, we were covered in a light sheen of perspiration. Erik's cheeks were covered in a happy, exhausted blush. I assigned him the job of holding my water jug while I drove, and he seemed delighted with this job. As we made our way back across town, we sang "No Woman No Cry" at the top of our lungs. I felt wonderful and didn't feel like going home quite yet. I decided to run through the drive through at Taco Time. We returned with our little paper bags and enjoyed our bean burritos together at the kitchen table. I even poured Erik some sparkling orange pop, which I something I rarely let him have.

It just seemed like a special occasion somehow.

Look What He Can Do Now

Crash and Learn

My kid just crashed his tricycle for the very first time. I am so very proud. It was an impressive sight, and he ended up tangled in the wreckage. However, he got right back on it, and the event was an exciting topic of conversation over his afternoon snack. He is going fast enough now to require his helmet, which has been gathering dust in his closet, as he never did anything more than turn the trike over and spin the wheels for hours at a time in the past.

I think my days of reading quietly outside may be coming to an end. Finally.

Epidermis Profundus

I have thought long and hard about the cruel words that occasionally come my way. It's actually amazing they don't come more often, but 99.9% of the feedback I have ever received here has been positive. Maybe that's why it's so shocking to hear something negative. I could start a blog on casserole recipes or little stories about my cat and would expect more negativity. In the old days, I would have cried for two days. This time, there were no tears shed whatosever. Instead, the four ugly words followed me like obscene little ghosts as I went about my daily activities, but a glance over my shoulder reveals that they are beginning to vaporize. Knowing the way I think, I will likely never forget them, but they will get shoved in a box somewhere in my brain.

My skin doesn't feel very thick, but maybe I am making progress after all. If someone pokes fun at my son by calling him horrible names and it doesn't bother me, my guess is that there would be something incredibly wrong with me. I want thick skin, not gnarly calluses.

Right?

Of COURSE it will hurt my heart. However, I hope that with each passing year it gets a little easier to heal these types of wounds. That they will feel less like axe wounds and more like paper cuts. I have faith that it will be easier. Looking at my latest response, it is clear that it already has. I can hardly read what I wrote two years ago here, as my heart fractures into millions of pieces. I am enjoying life again. That's progress.

When I started this blog, I did it thinking I was just whispering my feelings into the darkness of the universe because, quite frankly, I didn't know what else to do or where to turn. Writing has always been a comfort to me ever since I could hold a pencil. To find out someone is actually reading my words and might even feel a little less alone, WS child or not -- well, that's comforting to me, too.

It's nice to be heard and have hands to hold. Thank you.

A Close Shave

I am incredibly excited.

Because of Erik's anxiety and sensory issues, taking him for a professional haircut has never been an option. Brian purchased an electric hair clipper kit at Costco years ago. I fell in love with the little plastic cape, the cute little mirror, and the collection of clipper guards in various lengths. I cut Brian's hair twice with it but decided doing this was too scary. After all, Brian works in an office setting and needs to look professional. To cut Erik's hair, I have been using a pair of tiny scissors with blunt ends ever since he grew his first strands. He has so much of it now that this has become a ridiculous endeavor. I can get it to look presentable, but when it grows out, it sticks up all over the place. And I have lacerated the loose skin overlying my knuckles more than once when he moves suddenly. I bleed but continue to cut because getting him to sit still is next to impossible.

For the past couple of haircuts, I have taken the silver hair clipper out of its zippered case. I put it on the counter and let Erik touch it. After a while, I turn it on to let it buzz and hum under his fingers. Then I put it away and store it back under the sink before I begin hacking away at his hair with the baby scissors.

Today I got the set out again. I found a guard that looked like it would work, and I snapped it onto the shaver. I took a deep breath and readied myself to try something new. I told Erik he could watch his John Deere DVD after I cut his hair, and he agreed to sit on the counter for me. He very quickly spotted the shaver and allowed me to turn the thing on once again. We talked about it for a minute, and then I ran it across the top of his head a couple of times at warp speed. A couple of alarmingly giant gobs of blond hair fell onto the counter. I winced but continued, hoping my quick shear would not ruin any upcoming Christmas photos. He squinted his eyes shut, still smiling, and let me continue, seemingly enjoying the sensation on his skull.

What used to take me 20 minutes now takes me two. Sure, the guard was a bit on the short side, and he looks like a the youngest jarhead in history, but it's fairly even. He was tickled pink when we were through because he has seen his father use an electric razor and seems to like being a little more grown up these days.

Potty Training Continued...

My son sat on the toilet today! He did not even scream, cry, or curse at me. He seemed to even enjoy the experience. I ask him regularly if he wants to try it, and he usually firmly but politely lets me know that will not be happening, after which I let it drop. Forcing the issue has only caused more of a delay. Yesterday he gave me a couple of unenthusiastic okays. He sat down on two occasions and even accomplished something during one session. Stinky Dog came along for the ride and gave him encouragement in his deep voice. It looks like I will eventually need to schedule regular visits to the bathroom, as he does not give me clear signs (until it's too late) indicating he needs to go and doesn't seem to give a hoot if he is sitting in his own filth or not. He does enjoy fruit snacks, however, and is pleased when he is presented with those, so that gives him some incentive.

Last summer I discovered Erik's diaper was overflowing at Los Angeles International Airport five minutes before our plane boarded. I had absolutely no place to change my long-limbed boy. Changing tables are no longer structurally sound for Erik, as he would likely snap them right off the wall. I ended up finding a counter in a janitor's area inside the ladies' room and I did it there. It was a complete nightmare, after which I wanted to bathe in gallons of hand sanitizer, but I shudder to think what would have happened if we had boarded the small plane with a loaded diaper. There wasn't enough room to stash a larger carry on bag, let alone scoop poop from my child's pants without putting my elbow in a fellow passenger's eye.

We watched Potty Power again yesterday. In this DVD, the narrator, named Jessica, and her friend, "TP" (a talking roll of toilet paper that is noticeably suddenly absent during the segment on wiping bottoms), tell the story of Princess Jill, a seemingly chronically constipated little girl who refuses to use the powder room. The court jester, a disturbingly pervy little creature who sings and tells really horrible jokes that make me laugh every time, decides that the princess is displeased with the color of her potty, which looks as if someone got a hold of it with a BeDazzler, and paints it green. The king and queen then replace the princess's diaper with "royal underwear," a term which now makes Erik giggle, and her potty dilemma magically resolves.

Erik absolutely adores this video. It is disturbing, and I find myself singing songs like "Wipe Your Bottom" and "Sittin' On the Potty" in the car, but it has sparked Erik's interest in using the bathroom.

Unfortunately, his potty problems run much deeper than a fresh layer of kelly-green paint. He seems to find the setup on the adult commode uncomfortable and awkward, but he is far too big for the potty chair I purchased with the intention of having completely trained him two years ago. However, he does understand the toilet and its accessories and is slightly interested -- but not quite enough yet to make it a habit. He is making some progress, and after talking to his teachers, we have decided not to force the issue.

There are signs of progress now in terms of general development as well. He is beginning to enjoy slipping our shoes and clothing on. He very confidently clomps around in our sneakers and boots and finds this greatly amusing. I figure this is a step in the right direction. In fact, today he put on his father's hat, looked at me, and said, "Hi, Booga," which is something Brian always says to him when he comes through the door after work. He is thinking about being like us now, and that is wonderful...and even a little flattering.

Hopefully, that will carry over into the lavatory!

First Christmas Party

We attended the Christmas party at Erik's school last night. Erik has been a part of this place for quite some time now, but we have never been to one of these parties. I suppose I never felt like spending any of my free time there before. Earlier in the day I asked Erik if he was interested in seeing Santa, and I was amazed by his newfound enthusiasm. His reaction sparked excitement in me that I haven't felt in the past few years. I put on a fresh coat of lipstick and switched out his shirt for something with less food smeared down the front. I realized I was having yet another "normal mom moment" and enjoyed the feeling. It's nice no longer being trapped at home by a noisy world.

When we arrived at the school, the street was clogged with cars. The entrance was decorated with a bright green garland of lights, and people were filtering through the front door with their children. Erik was greeted by the staff, and we made our way to the little gym at the end of the hall.

The long, cramping line to see Santa was made up of people who looked mostly only vaguely familiar. I eventually spotted a couple mothers and their spouses I knew well and chatted with them as we stood in line. The sweltering temperature in the room almost took my breath away at first, and I stripped off my jacket. We stood next to twin girls whose mother introduced herself and reminded us that we were invited to their birthday party this weekend. I racked my brain for items 5-year-old girls might like to play with and tried not to panic about being immersed in yet another social situation. When we made it to the front of the line, Santa extended his arms to welcome Erik. It was a sweet sight to see. Erik didn't hesitate this year, even though he has only seen Santa once. He went quickly to him and was placed on his lap. I snapped a couple of photos and then was approached by another mother who introduced herself and shook my hand firmly. She explained that her daughter rode the school bus with Erik last year and that Erik was her own personal favorite. She admitted she had really fallen in love with him. She remembered out loud when Erik first arrived at the school. How he could barely walk and never said a word. How she was amazed by his progress over time. I felt unexpected emotion wash over me as memories of the first two dark years of Erik's life flooded my brain. I remembered the struggles we had in the very room we stood in. I smiled and successfully fought off tears, realizing I have packed many of those memories away now and have moved on but that they would always remain inside of me. I shook off the feeling and told her that I loved her daughter, a little girl with beautiful blond hair, a sweet smile, profound compassion for my anxious son, and an extra chromosome. She smiled back at me and disappeared back into the crowd. I am amazed at how easily people approach me these days and show our family such kindness. It was difficult but eye opening to have a view into our little world from the outside. It is nice to know that we are not invisible after all. I needed that.

On our way out, Erik did the cupcake walk with Brian and emerged with a goatee made of slimy chocolate frosting. His teacher greeted me and reported that this week he followed her instructions for the first time. She said it was no longer necesssary to lead my passive son through each and every thing and that he had improved a great deal. She described how he used to be, too.

Whew.

Brian purchased a snack-sized bag of cookies at the bake sale table, and I bought a star for the Christmas tree in the hall. I put Erik's name on the tag and hung it from a branch. I try to give back a little every year. The funds for the school are evaporating, but I have hope that things will change.

They sure have for us.

Manly Chortle

I tickled Stinky Dog's tummy as I crawled into bed next to Erik this morning, and the putrid, floppy stuffed animal actually laughed. It was a deep, totally genuine sound that made me giggle, too.

Methinks the elusive pretend play component of childhood is finally kicking in. I'll have to check, but I think Erik could possibly be the first ventriloquist with WS in the world.

America's Got Talent, here we come.

One of Those Days

Another first: Erik locked me out of the house.

I stand on the front porch, completely embarassed because my girlfriend is leaving and has to be somewhere five minutes ago. She is on her cell phone and looks in my direction with a concerned look on her face. I smile sheepishly and peer through the side light window. I see Erik's face and talk slowly and loudly, begging him to open the door. He stares back, seemingly quite pleased with himself. He looks directly at me and smiles defiantly, enjoying the power he suddenly has. I finally decide to trick him by asking him if he wants to go outside, and I instantly hear the deadbolt slide, freeing the door. I jam my foot in the door like the world's rudest salesman and stomp inside the house, raising my voice and telling him that he is never to do that again. My fear for his safety has transformed to frustration and anger. He quickly bursts into tears, and his face goes red and scrunchy. I roll my eyes, hug him, and take him outside to play.

He rides the yellow tricycle with the little seat he could not balance himself on before for the very first time. And he rides it all the way around my Jeep in the driveway, even steering the dang thing.

I cheer loudly.

Mess

Never think that God's delays are God's denials. Hold on; hold fast; hold out. Patience is genius.

-- George-Louis Leclerc de Buffon

We made it to church this morning. Although we are now fairly regular about attending, we still don't go every week, and that's just fine with me. My attitude is slowly improving about the whole experience, despite my general dislike for organized religion, and my fear is beginning to fall away somewhat about letting Erik go to find his way in that particular environment. It just feels right. It is what I fought for.

We are now attempting to get there early enough to enter through the front doors so Erik can greet the greeters and other members of the congregation like the other children do. It feels gloriously normal. From there, we take a detour back out of the sanctuary and locate Marla, Erik's personal caregiver, to drop him off. This morning she mentioned she might take Erik into the sanctuary during the service for the very first time. Brian and I looked at each other and voiced our surprised approval.

This morning's message was about patience. The word was defined as the ability to live for the here and now, even in the middle of the incredible mess that life sometimes is, instead of trying desperately to control what we cannot and rushing to get to the next perfect thing we desire to do or be. It was explained how even the story of Christmas has been so sanitized and idealized that the pain, struggles, and heartache that accompanied and even helped bring about the miracles have nearly been lost. And how we might relate to it and find even more hope in the story if we know the chaos and the mess that went with what truly happened. Because we live in mess and chaos a lot of the time.

Part of my own personal mess includes the struggles with isolation and heartache that come with having a child with some very bizarre special needs. We have occasionally simply been forgotten and excluded in the past, even at church. Now that we are included as much as possible, things are still messy. For example, it rips my heart out to watch the other children gather at the front of the sanctuary for the children's moment during the service each time we attend. I'm getting accustomed to it and even enjoy it a bit, but it always stings my insides knowing Erik is unable to participate.

Today, though, the door to the sanctuary opened, and Brian whispered, "Here comes Erik." I turned to see his little face bobbing in the group of other children. Marla sat down with him on the edge of the group nearest the door. Erik seemed slightly anxious and hell bent on loudly repeating "Happy New Year" to whomever would listen for some reason, but Marla whispered in his ear, and he finally became quiet. His eyes were wide, and he looked up at the lights and then around at the faces of the other children. When coins were dropped into a metal bucket to fund meals for the hungry in our community, the sound caused Erik to cover his ears in alarm. However, he remained sitting on the steps with the other children. The steps he has never touched before. The steps where I once stood in my polka-dot dress to be baptized. The steps where I waited alone in an empty sanctuary for Brian to see me for the first time in my wedding dress. The very same ones. Now Erik had a place on them with everybody else. Finally. My heart swelled with happy ache.

I felt hot, embarrassing tears welling up in my eyes, and I tried to will them away.

As the children finished their portion of the service and they were told to leave for their age-appropriate programs, Marla pointed us out to Erik. By this time, the tears were quietly flowing from me like rivers. They ran down both cheeks and the front of my neck into my sweater. There was no stopping them now. We began waving at him. Erik was obviously surprised and smiled back as he was led past our pew. The people around us smiled and glanced back at us, too, not knowing our story but obviously appreciating our unusual, unbridled enthusiasm. From there, he apparently spent the majority of his time in the children's program he would normally be part of. The very program that has not been possible for him in the past because of his hearing. By Marla's side, he had very little trouble this week.

We gathered our things after the service and found Erik and Marla. As we turned to leave, I threw my arms around Marla (something I do not normally do) and hugged her tightly. I then plucked one of the last shortbread cookies from a tray for Erik, and we made our way outside. Erik squinted his eyes tightly shut as Brian held him up to the rope hanging down from the church bell, and Erik gave it a few tugs, filling the air with bold, joyous clanging. I made small talk as I fought persistent tears and marveled at how completely wiped out I felt. I laughed out loud at this and sighed.

I was a happy mess.

Lock Up When You Leave

Will I ride the summer winds
or dance upon the crimson horizon
Will I find paradise in hell
If I go deep into the woods
If I go to this cabin

-- "This Old Cabin" (Agalloch)

You might remember that I used to daydream about hiding in a log cabin when my heart simply could not take any more pain. I would place Erik on the soft, braided rug that cushioned him from the rough planks of the floor to play. I would light a fire and bake something that filled the room with the scent of cinnamon and vanilla. The red and white gingham curtains would always be drawn tightly shut over the little glass panes above the kitchen sink. The place felt ancient and worn but gave me so much comfort. The two of us were always snuggled inside, away from the world. We were perfectly bonded as mother and child there, and no words seemed to be necessary. I never saw what was outside and had no desire to peer into the darkness that seemed to surround us. In fact, I can't remember the place having any other windows at all. It was the strangest daydream I ever had. I used to go there quite often.

I have no idea how or why.

I can remember the place vividly in my mind, but I haven't been there for well over a year now. Sometimes I want to return to air the place out, but I know that is an excuse to poke around and see the place clearly, which I was not meant to do. We seem to have made our way out of darkness of the thick forest for good. I am still sad that I can't seem to find my way back. I suppose it served its purpose.

I have always wondered if people can detect the secret that is inscribed on Erik's DNA. I have heard that it is sometimes visible in his smile or on his face when he cries. The sheer horror of the diagnosis has faded after being exposed to daylight over the past couple of years, and I now find myself curious about the way the world sees him. Maybe that stems from a little fear, too.

I remember the day I knew my baby was different. I held a friend's infant on my lap. When this animated little girl smiled at me and simply moved her body, I saw everything clearly. The room began to spin, and I swallowed hard to fight the urge to vomit. I can't remember exactly what I said to my friend, but she definitely remembers that day, too. That was the exact moment I saw what had been lost. It just happened to be wrapped in soft, sweetly scented baby clothes cradled in my lap. A few days later I found the cabin in the woods.

I can still see the differences in Erik as he grows, and I am becoming comfortable with them. Hell, I even love most of them. At the same time, though, I'm blind to how the rest of the world sees him. It is not my place to see him any other way than I do. Sometimes, though, I wish I could step outside of myself and take a look. Maybe it's not important. I just feel that it might give me more tools to help him find his way somehow. I just don't want anything to injure me so badly that I feel like hiding again. There are some things, I suppose, that I am not meant to see.

Erik and I are no longer hidden from the world. Our interactions with it have been mostly wonderful, but we are still incredibly new at this. If I am asking questions, I think I am ready to open my eyes and tackle what comes our way.

There's no turning back now.

I just hope that the woman who discovers that strange little cabin next takes comfort in the faint scent of cinnamon left behind and the warmth of the fire she will eventually learn to build. I really miss that place.

However, it's time for me to leave it for her to find.

Hills

Thankfully, I no longer feel like WS is a wall that separates me from Erik. The distinct, autism-like traits he had have gradually fallen away, although some still remain, subtle and strange. He seems to really hear me now, at least most of the time, and seems to understand most of what I say. He even thinks I am somewhat funny at times. Instead of mostly parroting back my words, he responds appropriately, and we are beginning to have real conversations, which I enjoy immensely. He loves new words and phrases, and he tries them out before committing them to memory for future use. His language is organized and meaningful.

Having said that, though, simple tasks continue to be incredibly difficult. Erik was a completely passive boy when he entered early intervention. Not long ago, he would stand there, drool stringing off his chin, and patiently allow us all to care for him and gently guide his body through the motions of daily life. When things got to be overwhelming for him, he would just slump over and tune out.

Things have improved a lot. However, I am now encountering a frustrating mixture of extremely poor motor skills, some remaining lack of understanding, and the normal pediatric rebellion that comes with being almost 4 years old. While I still get a lot of reassurance from the people around me gently indicating Erik's behavior is perfectly normal for a 4-year-old, I wonder if they truly understand that it is still necessary to hover over Erik to get him to perform even simple tasks. I am beginning to notice that they don't seem to have to with their children. At this time, Erik cannot even consistently complete two-step instructions. He will sporadically do one-step instructions when asked now. I can physically steer him where I want him to go to accomplish something that needs to be done, like brushing his teeth or taking a bath, but he rarely will volunteer to follow instructions to accomplish daily tasks without becoming furious at me and throwing a sometimes violent fit. I am kicked and slapped many times a day. He is too heavy to carry like I used to, although I now find myself doing it anyway when we are short on time and he is raging or just sitting on the floor being happily defiant. Most of the time it does me no good to repeat myself over and over. Consequences for behavior seem to only make things worse and are now sparking some obsessive rumination, and I have resorted to simply shutting him in his room when he tries to destroy things until he is able to calm himself down. This usually doesn't take terribly long. I just don't have the time or the energy to beat a dead horse.

Do they understand that Erik doesn't understand the simple concept of rubbing his hands together to wash them, no matter how hard I try to explain how or demonstrate it for him? Do they understand what it's like to have a child who still doesn't seem to grasp the concept of holding a freaking crayon? Do they understand how tired I am after changing nearly four years of diapers? Do they see the pain in my eyes when I see tiny children moving so easily without falling and performing tasks that I am still waiting for Erik to do someday? Do they know how ridiculously simple my dreams for the future are? Do they understand that some days feel as if I am trying to run uphill? Do they know how exhausting this is?

I don't think they do.

Maybe because it's because I normally try not to sound like I am complaining and just smile and nod back. Honestly, though, I just need to talk about how tired I am sometimes. I didn't realize there were nerves in a person's soul, but, as it turns out, it is possible to ache there.

The last couple of times I walked Erik to his classroom we have been intercepted by my former parent group moderator in the hall. Despite her having nothing to do with Erik or his program any longer, she seems to have made it her personal mission to accept Erik's hand in hers and walk him to his classroom before giving him instructions to show her his locker and hang his backpack and jacket on the little hooks inside. The trouble is, Erik, of course, wants no part of any of this, and she must force him to do it. This apparently requires talking to him like he doesn't have two brain cells to rub together. Her words almost have a Nurse Ratched quality to them. Horrified, I wonder if I sound anything like this to outsiders. I'm hoping it's just her. I still have a bad taste in my mouth after the day she labeled him "severe" during parent group. It is quite obvious to me that she still believes that is true. I know things are difficult, but I never believed Erik was actually severe. Maybe he is. Maybe I just can't see it. I don't know what's worse. People calling my kid a "retard" or treating him like the word sounds.

This whole procedure really rubs me the wrong way, but I am unable to find a socially acceptable, kind way to tell her to get the hell away from my child. Instead, I humor her, as Erik does not notice her tone and she seems to be trying to help, and I let her go through the maddening motions I would be required to in order to get him to perform these tasks. Erik inevitably can't seem to see the connection between the metal hook and the loop on the top of his backpack, drops his things, and walks away, distracted by the noise and the plastic bins full of toy cars and trucks. Unable to take his coat off by himself, she helps him off with it, and he drops it on the floor. Sometimes he still drools, indicating to my experienced eye that this whole production has now crossed the border into not-a-chance-in-hellsville. I stifle the giant scream that is assembling itself in my lungs and smile sweetly. She then instructs the adults around us that Erik is to do these things by himself, and we are to not distract him.

Yeah, right.

Today I was being kicked in the chest once again by my furious, ever growing boy as I tried to change a ruined diaper packed full of the rotten products from the combination of last night's first attempt at mac and cheese and his sensitive stomach, and I almost lost it. Everything began crashing down on me inside, and I had to finish quickly and walk away.

I guess I'm just tired of running uphill each and every day.

Dandy One

(My father helping Erik blow bubbles. Erik calls the large bubbles "dandy ones.")

I had a good day today. I don't seem to have many these days. It was rather lovely.

Despite the heat, autumn is in the air. There is the scent of earth and ailing foliage baking in the hot sun. This warm mixture of death and life fills my nostrils. I roll down the windows in my vehicle and let all of it into my lungs. I drive past my old schools, one of which has recently been razed to make way for a new one, and feel more than a little nostalgic. Last week I drove past the ancient brick building that housed my fourth grade physical education class and had flashbacks of running laps over the glossy wooden floor. My gym instructor sometimes wore paint on her face that make her look like a rather fetching version of Gene Simmons. If the boys didn't behave, she would kiss them and leave black and white smudges on their cheeks. These days that kind of stunt would trigger a multimillion dollar lawsuit. Now that I think about it, she was probably the last gym teacher I had that was remotely interested in kissing boys, anyway.

Not that there is anything wrong with that.

Erik continues to do well off dairy. He refuses to consume soy milk but will eat soy yogurt and cheese. His bowel issues have almost completely resolved. He has discovered the joy of asking more complex questions. He has queried, "Are you ready to go now?" and "Do you watch Elmo?" He seems to be realizing that these kinds of questions start conversations much more effectively than random words (Boppa! Monster trucks! Wheels!) or rumbling engine sounds, which previously made strangers squint in confusion and look to me for translation. He still tells jokes that make sense only to him, and he laughs hysterically at them. He is amazing. His motor skills are still horrendous, and he doesn't show signs of substantial improvement in this area, but he gets around quite well if he is not distracted. Once he is outside in a bustling environment, he tends to stumble and fall more. Amazingly, it looks like soccer comes naturally to him. While he can dart about kicking a ball, he seems quite annoyed when the concept of passing it back and forth is suggested.

He has finally mastered the stairs in our house. I will never forget his therapist walking him up and down our stairs over and over. His legs just didn't seem to work the way they should, and I dreaded this exercise because it seemed hopeless to me. When her Subaru used to pull out of the driveway, I would burst into tears. I still remember this well and detest our stairs, although Erik now races up and down them at light speed, sometimes not even bothering to use the handrail. He has only fallen once.

I got his little plastic blocks out the other day, bracing myself for yet another disappointment, and he actually stacked the dang things for the first time. He was shaky, but he did it and seemed annoyed when I tried to help, which I was pleased to see. He obsesses less about wheels and more about sprinklers, talking about sprinklers and sprinkler-related paraphernalia each time we leave the house or drive past a park. He wants to go next door to see the neighbors' sprinklers and asks me over and over if they will be on, sometimes as soon as he opens his eyes in the morning. The last time we went to a playground, he was merely interested in playing with the drinking fountain, using the slide and equipment only to humor me.

Erik's echocardiogram is scheduled for the 18th of November. There is no way we will be able to get him to lie still for the study, so sedation will likely be necessary. I will be fine after the study but will feel intermittently nauseated for weeks until that date comes and goes. If all goes well, we only have one more year of annual heart checks. Hallelujah.

Tonight we just finished my father's birthday dinner, and the house smells like meatloaf and potatoes. I stuck a candle into the glistening crust of a freshly-baked apple pie my mother made, and we sang "Happy Birthday." Erik sang the loudest. He loves birthdays. If you ever want him to sing to you on yours, just give me a call, and I'll put him on for you.

All in all, it was a very good day.