A Dog Day Morning

Early this morning I went to drop the puppy off at the vet. He’s six months old and is officially ready to be neutered. There was a woman behind me with a French bull dog, her eyes squinty and red. She smiled meekly and said,

“I’ve been crying all morning about bringing Midge in here for his neutering. I was supposed to do it 3 months ago but chickened out. I feel just terrible.”

I smiled weakly and tried to sympathize with her and her dog Midge, who clearly had no idea what was in store for him, his tongue sticking out and his tail wagging. “It will be fine.”

I was glad she wasn’t there earlier when I was questioning the billing.

“What’s this extra amount for right here, this $140?”

“Well we can’t seem to locate his second testicle. It hasn't descended. It may be in his abdomen.”

“And that’s going to cost an extra $140. Do I have any other options? Does the testicle need to come out if it’s lodged in his abdomen? If it’s in his abdomen can he still be a dad?”

“He can still get a female dog pregnant.”

“Really? It’s just, it’s a lot of money and I have a lot of expenses. I have kids and all. Can I get a second opinion?”

“Well, you are on a wellness plan and you’ve already made payments toward the neutering. Another vet will tell you the same thing and it will cost pretty much the same. We can’t move forward unless you consent and it’s in your dog’s best interest.”

As I talked I noticed the dog nurse getting more irritated by me and my questions. Don’t get me wrong. I like the puppy. He’s oodles of fun and companionship. And I’m all for the neutering – it’s the responsible thing to do and if it means less humping and marking his spot I’m totally game. But learning that he has a unique situation that may require more invasive surgery? The odds once again not in my favor? The puppy’s situation not typical? Seriously?

As my girlfriend, who has two disabled children said,

“When they start with, ‘the chances are minuscule,’ I always have my guard up.“

We are moms who have the one child in one hundred and ten that has autism. We have the one boy in seventy that has been diagnosed with autism. We are part of the statistic. We are not the lucky ones nor are our boys who have to fight everyday to try to feel part of this world.

I sign the papers of consent and hand them to the dog nurse and give him the leash.

“Do you need anything else from me? I need to split and get my kids off to school.”

His arms folded in front of him, he takes the leash, his face still in a frown, “Would you like to say good-bye and good luck to Duncan?”

I must look flustered, my reading glasses perched in my messy hair, sleep still in my eyes. Its 7 a.m. and still dark outside. I wave at my puppy who is more interested in the dog nurse’s shoes and pant cuffs and bend down to scratch his floppy ears.

“Be good, Duncan.” I say, confirming the dog nurse’s suspicion that I’m a crappy pet owner.

“When can I pick him up?” I ask, getting ready to leave.

“We’ll call you when he‘s ready.” He says curtly.

“Yeah, but I have a class tonight and so could I get him by 4 p.m.?

The dog nurse has picked up Duncan, cuddling him and letting him lick his arms and face. I want to tell him that Duncan eats dirt with that tongue and licks sidewalks, garbage cans and curbs but I stop myself.

“I couldn’t possibly tell you right now,” he says exasperated with my line of questioning. “We can call you when he is in recovery. “

“Okay, well my class gets out at seven and I have to pick my son up from hockey so if 4 p.m. doesn’t work I can come by around 7:30 p.m.?”

“We close at 7. We'll do our best to get him ready before 4 p.m. But if it’s later than 4 p.m. you’ll have to make other arrangements.” He says leaving me with the tear stained lady and Midge.

I have somehow offended his sensibilities. What I want to say is,

“I’ve got bigger fish to fry. Yes, my dog is great. The kids seem to like him and aside from his marking the bathmat and Sean’s stuffed animals with his stinky pee, he’s a good dog. But he’s a dog, a family pet. He is healthy except for the hidden nut. And I have a child who has limited options. If I’m going to spend money it will be with my child’s best interest first. It’s the least I owe him. So be patient at my mulling it all over, please.”

I want to tell him that just yesterday at an appointment for my migraines; I told my doctor that I couldn’t do a colonoscopy. He told me I am at a higher risk and that I need to get screened at age forty. I told him if I have an extra four grand to spend it will be on my son. I feel fine and I don’t have time or money to worry about cancer. He told me my insurance would cover it. I said,

“Yes, maybe, once I meet the ten grand deductible which after today I’m looking at only $9800 left.”

He told me to save up for the procedure. I smiled and said,

“Treat myself to a colonoscopy. Sounds like Christmas morning.”

He laughed and said, “I’m serious. Get one in the next year.”

So, dog nurse, forgive me if I seem a little high strung over the billing. Life is about priorities and sometimes we have to say unpopular things that may not go over well with others. We are just trying to do the best we can with our resources and our situations. Yes, I’ll pay the extra money, of course I will. But just because I’m not torn up like Midge’s owner and I balked over the extra $140 doesn’t mean I am a bad pet owner. Just because I didn’t drop to my knees and take my little puppy into a kissy embrace and whisper with tears in my throat, ‘be brave, little one. Mommy loves you,’ doesn’t mean I lack affection. I happen to be a pretty good pet owner and that says a lot considering the pets we owned when I was a kid roamed the neighborhoods and slept in the garage and ate scraps from the table and drank out of the creek.

I just have a different perspective. That’s all. My dog has a charmed life. He eats yummy puppy food, sleeps on a pillow, runs and is joyful. My son, on the other hand, struggles everyday to fit in and to be happy. I can’t muster up the tears for my lucky dog who is getting a fairly normal procedure done. It’s my boy who I cry for when I see how much of life he misses out on because of autism. To me, that’s my worry, that’s my true sadness.

Forgiveness

The past few weeks have been a whirlwind. My husband and oldest went to China together for a trip of a lifetime. They travelled to Shanghai and took a train to Beijing and made visits to many of the ancient wonders -- The Great Wall, The Temple of Heaven and the Forbidden City. They went to a tea ceremony and visited the World Expo back in Shanghai (my oldest desperate to visit the Canada Pavilion to see some hockey. He was equally impressed with the Czech Republic which built part of their pavillion out of of hockey pucks -- travelling all the way to China to see hockey? Go figure.)

After nine days they returned home for a day, each of them heading out the next day for different trips. My husband was travelling to Las Vegas for a trade show and my oldest was going to Outdoor School at a camp in the Columbia Gorge near the Sandy River. Another week without the anchors at home. Another week feeling adrift.

Meanwhile, Sean seemed to struggle more in their absence. He liked having me to himself but I was becoming worn down and less patient than usual and that made him frustrated and unsorted.

There was one day that was particularly difficult. I went to get Sean from the bus and he seemed to be in good spirits. We took the puppy for a walk and stopped at the park, the weather was unusually sunny and crisp. He seemed happy.

When we left to go back home he started to unravel. I don't know what it was but he became anxious, his body going limp in places and his mouth twisting. He started to pull at his pants and lose his arms in his sweatshirts, caving at his knees and hitting the ground followed by whining, then yelling and screaming. I went to him, the puppy pulling in the opposite direction, but Sean rolled away in the middle of the park driveway, coming up to his feet and running into the street. I panicked. The puppy wanting to go the other way, my left hand engaged with a leash and only my right hand free to reach Sean.

"Fine," I said, "you have your fit. I'm going back."

I thought he'd follow me, shrug off his sticky thoughts or whatever was making him so upset, and turn to catch up with me but he started running after a car. I could feel people starting to watch us, his bare bottom peeking out of the top of his pants, his arms lost in his shirt, and his sleeves wagging like wind socks. I rushed back to him, dragging the puppy with the leash, and righted his pants and tried to grab him with my arm, pulling him into me. He was thrashing and scratching, his eyes not his own, but wild and flecked with yellow, watery with tears. I pulled him as far as I could toward the parking lot where I had parked the car. He continued to scream, scratching my shoulder and I could feel the burn and the sharpness of his nails (I meant to trim his nails the day before) and dragged him to the car.

Any body walking by might have thought I was abducting this child. He was hitting me and snarling and I was strong-arming him into the car, pushing him down into his car seat, my shoulder and arms chalky white from scratches, dotted with blood. I couldn't talk because I was holding back my tears and anger and disappointment.

I buckled him in and got into the car. I was certain people were writing down my license plate numbers reporting me to the authorities -- kidnapping of some sort. I couldn't drive right away. I was trying to take deep breaths, blocking his arms and legs that were forcing there way past the head rest of my seat.

"Stop it!" I yelled. "I can't do this, Sean. I can't do this anymore," and I felt the tears come, my voice hyperventilating and my body shaking with fear.

I drove a bit down the street and called my husband.

"What's going on?" he said hearing the shrilling yells.

"He's out of control. I don't know why. What am I supposed to do? Do I take him to the hospital? Should I take him to a police station? What am I going to do!?"

My husband was in Las Vegas, unable to do much and only imagining the chaos.

"I'm sorry. Can you make it home with him? Just make it home and try to calm him down when you get there?"

"I'm tired. My arm is bleeding. I am so tired of this. We have to come up with something else. This isn't working."

In the back Sean screamed, "I hurt my Mommy! I hurt my Mommy!"

"I know, I know. Just call me when you get home, okay?"

I drove further and Sean came up between the front seats and plowed his small fist into the side of my nose. The pain so sudden and unexpected that I stopped the car and pulled over to cover my face. More noise and rocking from the car. Surely somebody is calling the police. I took another minute to get him back into his carseat and drove the rest of the way home, my nose and arm flaring with pain.

When we pulled into the driveway, he softened. He was muttering over and over, "I am sorry I hurt my Mommy. I am sorry."

I brought him into the house and hurried over to my neighbor's. She has a lot of experience in social work and knows our situation well with Sean.

"What do I do? He was out of control and loud and screaming. I think someone called the police. I don't want them to come and take him away. I don't want any problems."

She assured me that that would not be the outcome. She told me to call his teacher to see if he had a rough day. Follow up with his doctor to see if I needed to take him in. I did both -- leaving messages with the school and the doctor's office while he lay in a heap on the floor.

When he settled down I ran him a bath and fed him. He seemed hungry and tired. He thought he left his backpack at school but he didn't. "That is why I was so sad, Mommy. I thought I left my backpack on the bus or at school."

When I tucked him in I sat down on his bed and said, "Sean, you can't be like that, do you understand? You could have hurt yourself or somebody else. You hurt me, Sean. You scratched my arm and you hit me hard."

"I scratched you?" he said, surprised. How lost he had gotten in his rage.

"Yes, and it hurts." I showed him my arm, dotted with scratches and cuts, swollen at the top.

"No more, Sean. You can't be like that. You have to control yourself better."

"Yes," he said sleepily.

The next day after school he was stimming, going through his routine questions,

"How do you spell Brad? Is there a P in Brad? How old is Duncan?"

I went about putting dishes away, robotically answering the questions. Then he became silent and I looked over at him, his eyes big and doughy staring past my shoulder,

"I am so sorry I hurt you."

I tried to get his eye contact and moved my head into his field of vision,

"Are you talking about yesterday? Is that what you are sorry about?"

His eyes locked with mine, and I saw real pain and compassion in his eyes,

"Yes, Mommy. I am so sorry I hurt you." Then he turned away sharply and began hopping and continued with his questions.

For a brief moment, I saw what keeps me connected so tightly with this child. I clearly saw the boy that is locked inside under layers of tangled brain wire, impulses and neurological storms. I heard that boy calling out from underneath it all, telling me that he didn't want to be the way he was and for that, he was sorry.

"You know I love you, Sean. And I am always going to love you. That's why it made me so sad. If I didn't love you so much I wouldn't care. Do you understand?"

He looked up, his eyes unfocused and said, "Duncan's a baby?"

I stayed with him, "You understand, Sean that I love you, right?"

He was looking at the ground, his fingers moving and he said, "Yes. Yes. I love you, Mommy."

That night when I tucked him in he ran his hands over my arm.

"What is that?" he said, over the edges of the scrapes.

"It's from the scratches when you were upset the other day."

He was quiet, I could hear his breathing and he said firmly, "I will never do that again. I won't."

I pulled his covers up, and brushed his mop of hair from his eyes.

"I know you don't want to be like that Sean. You just have to keep working hard, okay?"

With that I kissed him and turned off the light.

A friend, who has a child with autism, said to me once,

"If I was married to somebody who treated me like my son does I would leave him. I wouldn't stay. But he's my son. And he's autistic. What choice do I really have?"

Thinking back to that I realize we do have a choice. We can run and carry our hearts over our heads, protected and safe from being smashed into a thousand tiny shards, or we can make peace with what it is and stay. Like so many parents in similar situations, we grip our hearts with hands of armor and we hold our children with our achy, scratched arms and we love them the best we can, the best we know how. We learn to let go of the darkness, to release grudges and to not take it too personally. We have to search for love and forgiveness and bathe their tired souls in what we can tap into on those particular days. And in the end, we amaze ourselves at our ability to stay steadfast with our love. We don't run, we stay. Everyday we make that choice. To stay and fight for our kids.

A Thank You to Dad

Two weeks ago, my husband and I headed out 84 East toward the twist and turns of the Gorge, the Columbia shimmering and the firs stacked along the hills, swaying in a fall breeze, shoulder to shoulder like a church choir. We had a suitcase and a backpack and we were leaving it all behind. By it I mean responsibilities, parenting and worry.

We passed over the Bridge of the Gods, a steel and wood bridge stretching across the river from Oregon to Washington. We drove past the Honey man who sells raw honey and candles out of the hatchback of his ancient VW Rabbit. Then turned left into Skamania Lodge, our destination.

A good friend of my husband's was getting married and had chosen this beautiful spot nestled along the river. The wedding was held out on the green sprawling lawn -- the sky electric blue and a sun so fierce, that they seemed to melt against the thick forests and turn the river a silvery black.

All and all, we had so much fun. To be able to eat good food, dance and laugh without the worry of Sean, was a gift we had been given. No 2 a.m. wakeups -- we could sleep until our bodies felt rested. And for me that was 10:12 a.m. the next morning! The person so gracious to offer this to us was my Dad.

Now this is no easy feat for my dad. For starters, he's a busy man. He still works part-time, he also tutors children in English, he manages to make it to most of his grandkids activities (counting my kids - he has been a grandfather to twelve children and one more is on his way this month.) He is a good and dutiful husband and spends time with friends (still manages to make breakfast once a month with a group of guys he went to Catholic Grammar School with -- Hello? He was born in 1933!!) He is seventy seven years young and luckily he swam out of a robust gene pool (you should meet his 90 year old sister!) and looks and acts much younger than his years.

Not to mention, he doesn't like to fly, his hips get stiff and he's a worrier (I can thank him for that.) But when I asked him he didn't stammer, he didn't say, "Ahhh, let me think about it." He said, "Yes." This gracious, good man said Yes.

When my sister booked his ticket I felt a rush of gratitude. It is no easy feat to watch Sean. But my dad would rise to the occasion. When we picked him up from the airport his eyes were red and tired. He was on Midwest time and it was almost 11 p.m. west coast time. And yet, he managed to light up when he saw the kids and me. Oh and how happy my boys were! They had anticipated this day and now it had finally arrived.

The first day he helped me get the boys off to school and then we went out for breakfast and a long walk. My husband was travelling so my dad filled in and when the kids came home he took them to the grocery store for all of the illegal contraband that they only get when they are with their Papa -- frozen chocolate chip waffles, Corn Pops cereal, Rainbow Go-gurts and Keebler graham cracker cookies. My oldest was a bit sheepish about the splurge but Sean was ecstatic -- he'd been holding out since his summer visit waiting somewhat patiently for his Papa to let him scavenge the grocery aisles.

My dad took us for dinner insisting that I take a break from cooking and encouraged me to have a martini with my meal (it didn't take too much encouragement.) He helped me get Sean ready for bed and he and my oldest stayed up a little later talking and reading.

When my husband came home we made steak and baked potatoes and when Sean seemed sluggish my dad tucked him into his bed. I went to check on them. I saw Sean wrapped in covers in the bottom bunk bed, his head peeking out and my dad, on his knees, gently stroking Sean's hair off his forehead. When my dad turned to me I could see his eyes were wet with tears and he said kindly,

"I want Sean to know how much I love him."

Sean's eyes were closed, the hum of the fan and the violins from his music softened the room.

"I think he knows, Dad," I said and I went back to the table and wiped away my own tears.

"Are you okay?" my husband asked, stacking plates.

"I'm not sad. I just want to remember something really sweet and wonderful. I want to hold onto this perfect memory of my Dad with Sean."

And I did. I still tear up thinking about how tender my father was to my boy. My oldest is easy to love. He is fun and kind and interesting but Sean isn't easy. And my dad has always made every effort to let Sean know how much he loves and cares for him. He calls the boys at least twice a week and he always talks to Sean.

"Papa, what does Jimmy Neutron start with?"
"You get me a Justice League toy?"
"Papa, may you take me to Target?"
"Papa, when's Clare's birthday?"

It's never a two-sided conversation, however, my dad doesn't dismiss how much this actually matters to Sean (and believe me it does). I listen to Sean rattling off his questions while I try to get a few things done and then take away the phone from Sean (it's always a struggle -- "I talk to MY PAPA!")

I usually say,

"Thanks Dad. He really likes to talk to you. And I got a chance to put the laundry away!"

My dad always says, "He sounded great." or "I'm glad I got to talk to him."

He sees Sean as a whole person who has the same wants and needs as my oldest. In my Dad's eyes Sean is not broken but rather a boy full of life and potential. And that means everything to me.

So for this post I give thanks to my Dad. Thank you for sharing your heart with so many. And thank you for loving Sean for the boy he is. Thank you for always teaching me how to simply love free of conditions through your actions as a friend, son, brother, husband, father and grandfather. And thank you for being remarkably kind and good.

Oh, and thanks for flying 1800 miles to Portland and letting us get out for a whole weekend. We really needed it and we couldn't have done it without you.

You rock, Dad. xo Squirt

Early to Bed, Early to Rise

The activity level at 5 a.m. this morning was far too high for such a time of day. Sean went to sleep early with a low grade fever and cough. He missed dinner and dozed off as the sun was slipping off the horizon.

The evening was quiet, the soft tin whistle of the Irish music Sean likes to fall asleep to, drifted down the hall. We had the evening all to ourselves knowing full well that the morning would not be ours.

And here lies the problem. If we were smart we would have cleaned up dinner, talked for a bit and turned into bed early, knowing that the morning would come painfully early. And yet, the opportunity to open up a bottle of wine, let the dishes camp out a bit on the dining room table and just lounge on the sofas talking and laughing was too much to pass up. So we did.

My husband was out of town all week for work and had arrived home in the evening. My dad had arrived into town Wednesday night. The luxury to have all this time to ourselves, to spend time together without the interruptions ("What does Knock Knock start with?" "Papa, you take me to Target?") was like a saucy piece of fruit dangling in front of our hungry eyes. So we ripped it off the aching vine and gobbled it up with feverish hands.

Falling into bed, joy bubbling in my veins from my husband's return and my dad's visit, I fell fast asleep. A hard, heavy sleep, like a mallet hitting me square between the eyes. An hour later, I was jolted awake by the cries of the puppy in his "crate" (really more like a jail cell.) I lumbered out of the bed, the kind jailer that I am, and took him outside to relieve himself.

The idea of putting this bundle of licks and fur back into his "crate" seemed unlikely. He crawled up in my embrace, his ears pinned back, eyes swimming in devotion and affection -- all this just for being alert enough to hear him and help him. How I longed for 1/10th of that appreciation from Sean during the nighttimes of holding him after a bad dream,reassuring him that Batman isn't real, his face wet and hot and his angular body like a bag of hangers in my arms, poking my ribs and knees.

The puppy was a present for my oldest, a reward for good grades. He promised he would take the best care of him, he would keep his grades up and he would limit himself to one hour of television. He's held up part of the bargain but the part where the puppy goes for a nice long walk, leaves a mess on the street and the person has to take a baggie, gingerly pick it up and do the walk of shame until a garbage can presents itself -- that role has been assigned to me. I used to secretly mock those people. Now I am one of them.

So after I bring the puppy in from the crisp middle-of-the-night air, I settle back into bed, the puppy curled up against me, his hot breath on my neck and give into sleep.

Three hours later the familiar, squeaky voice enters the room, "Hi Mom,"

The puppy's ears pop up like satellite dishes and I rub my eyes and try to make out the squiggly red lines on the digital clock -- 4:45. My husband turns over and edges toward the left side of the bed and Sean climbs in between us and begins his talk, burying his elbows, chin and feet into our sides. The puppy growls as Sean tugs his tail and I will myself awake.

"I'm hungry," he announces to no one in particular. I get out of bed and take him to the kitchen to make him some breakfast, the puppy whining in my absence.

While I am making him breakfast my husband peers into the kitchen with tired, small eyes.

"Go back to sleep," I say, "it makes no sense for both of us to be up."

"I'm awake. I can't fall back asleep. Why don't you go back to sleep." he says, rubbing sleep out of his eyes.

"I can't go back to sleep either. I'm totally awake."

We make coffee and try to keep Sean upstairs. He constantly tries to break for the downstairs to shake awake his Papa. We take turns slugging down coffee and detouring Sean as he bee-lines to the stairs.

When I am finished with my mug I go to wash it and read the fading gold cursive writing on the inner lip. It's a coffee cup I got at Target after Christmas, a glittery holiday-ish cup that was on clearance. It had little shiny stars glued near the handle (which have since fallen off -- guess it wasn't dishwasher safe) and glittery curls of salmon pink and tangerine orange licking up the sides. And inside, written like fading ribbon reads,

"Gratitude leads to joy which fills our hearts with love and peace."

I stood there a moment, my eyes aching from lack of sleep and my lower back stiff and then smiled. Sometimes I need to be reminded of all that is good and tasty in my life -- whether it be seeing my dad, my husband returning from a week of travelling or the coffee warming my insides, keeping me alert for the moment.

My boy runs back and forth, a flash of red hair and pale skin and muscle, his eyes bright and laughter spilling from his handsome face. The puppy chases him, nipping at his heels, his tail wagging like a windshield wiper in a storm. The mug from Target stays in my hand, almost like a held prayer, and I am reminded of all that I have and I can't help but to keep smiling, tiredness lifting like fog from my head, my heart.

And So We Tumble Into Fall

It is that time of year - the hustle of school buses, the morning air so crisp that I shuffle into my robe pulling it tightly around me as I wait for the coffee to brew. Coldness settles on the windowsill and the box elder bugs are starting to huddle on the screens searching for warmth. Even the bees are flying slower and stinging more impatiently.

Another summer has gone by, slow at times and other days passed with the quick, focused speed of a bullet train. My boys wake earlier, sleep in their eyes trying to adjust to the inky morning darkness, their limbs and eyelids heavy.

I scramble eggs and make toast and cook bacon, feeling my life coming back to me, my time returning. And perhaps I do this too greedily, forgetting how quickly this time does pass and how even the rough days will somehow be lost to me and I will probably miss it. It is the hard days that make the good days taste that much sweeter.

The summer was tough but I shouldn't let that put an overcast on the entire season. We did have some family fun. We camped at the central coast of Oregon near Florence surrounded by mountains of sandy dunes that led to the tumble of ocean. Sean scurried up and down the dunes, sand spraying like silver glitter.

We went to the high desert and slept in cedar cabins and ate corn and flank steak with friends. We hiked a dormant volcano, trudging and balancing up the sharp edged and polished black obsidian rocks.

We went to the Cascade mountains, and set up camp right next to a fresh, clean alpine lake. At night the sky throbbed with fat, electric stars, our faces sparkled in starlight as we tucked into the tent.

These were definitely glimpses of grace and beauty, reminding us that we live in splendor and that if we are still and far away from the noise and bustle, we can bear witness to the movements of angels and hear the hushed whispers of earth and sky. And although the moments were fleeting, when I close my eyes I feel I can see those stars as they were, unreal and pulsing, and pick them one by one like fresh, dewey apples, a bushel of stars to hold in my heart.

Losing Sean

Today I felt numb. Sad and numb. The reality of our situation over the past month has been on my mind, gnawing at me periodically during the day.

I am losing Sean. I always seem to notice this in summer, when the heat pours in and stills the days. When the summer is coming to a close and my husband and I look at each other like runners on the last lap, our hamstrings locking up, our bodies falling forward and our knees and elbows bursting with scrapes and pain. It's as if we have fallen to our knees trying to make it to the end -- not concerned anymore about our time or placing but only about being able to stay in the race and cross the finish line. It's the very least we can do for our son.

I am losing Sean. I am with him all day. I try to finish laundry, sweep the floor, make a phone call, clean up the dishes and he is there, next to me, his big eyes staring up at me and his voice, always a stammer, "Y-y-you talk to me, Mom?"

I try to let go of the heat and mess and stress and give him my attention, slowly I answer, "Sure, Sean, what do you want to talk about?" knowing full well what our conversation will be.

"Is there a Pixar movie that starts with a T?"

My mind scrambles and answer Toy Story.

Then he asks, "Why don't I have an L in my name?" I tell him he just doesn't but tears spring to his eyes, "But I want an L in my name."

We've gone as far as "renaming" him as Seanly -- he also desires a Y very badly, too.

He goes on and on about his favorite topics.

"I can kayak in the deep blue ocean?"

"Remember that stupid time in Kaneeta?" (how could I forgot -- it was Mother's Day weekend and he had a meltdown because it was too crowded.)

"I can like the Justice League?"

"Is there a person's name with a Q?"

"What's your favorite sea creature?"

I have answered these questions and others like it probably over 1,000 times (Yes, you can kayak. Yes, I remember Kaneeta. Sure you can like the Justice League. Quentin, Quinn, Quimbley, Queenie. Dolphin, I guess.) And so it is that I find myself losing bits of my son and bits of myself, swirling quickly down a dark drain with no hope of stopping it.

My neighbor stopped by to check on us. Kind and discreet. She came up my back porch steps, her eyes tender and I felt my own wet.

"How are you guys doing?" she asked.

I felt my heart tear a bit. She has been our neighbor for five years, ever since we first moved to Portland. Her daughter, older than my kids, played with Sean, outlined his hands and feet with chalk at the block party, helped him carve his pumpkin at our first Halloween and went swimming with us in the summers.

I said to her, "I didn't know it would be this hard."

I am lucky to have such kind good neighbors who try to rally around us. Some of Sean's behaviors are really intense and hard to contain. She let me know that she loved my kids, loved hearing Sean playing earlier that morning with his Superman cape chasing the cat around the yard. She told me that whatever we needed that she and her family were always there for support, help or an ear to listen.

"Thank you," I said. "Thank you very much."

And yet I still feel like I've let everyone down.

Yesterday, Sean wanted juice and I told him no more juice. He threw a bottle at me and I found myself boiling with rage, my back throbbing from where the bottle hit. I grabbed him by his shoulder and pushed him into his room. He thrashed and yelled, opened his window and tossed a couple of books out onto the lawn. I ended up having to subdue him by getting him on his back, sitting over him to pin his legs and holding his hands down above his head. I just held him, watching the wildness leave his eyes and face.

"I will let go, but you can't hit me, you understand?"

He nodded, "I understand."

He went to touch his hair and I thought he was going to hit me and I felt my whole body flinch and I covered my face. When I took my hands away, I saw him for the little boy he is, flushed cheeks, damp red hair, bright eyes, "What's wrong?" he said, his voice soft like butter.

I tucked him into bed that night and when he drifted off to sleep I held his hand and prayed to somebody, anybody to release him from all the struggle and pain and frustration that he has had to deal with his entire life. His small, sweaty hand, the pads of his palms swollen with blisters from the monkey bars, so small and full of promise and I couldn't understand why he had to carry such heaviness in his lifetime.

"Give him a chance," I whispered over the hum of the fan. "Please, he's my boy and I can't bear losing him."

Check Engine Light

The other day my husband came home after driving the beloved loser cruiser (powder blue mini-van -- a model of car I swore I would never own let alone drive...) was in peril. It had smelled funny for a few weeks and was leaving sweaty spots on the driveway. We kept putting more oil in it realizing that there was a leak of some sort. Finally, the light came on to tell us to cut the crap and take the car into the mechanic.

Luckily, my husband prefers to ride his bike to work so being down a car wasn't a major problem. And luckily it turned out to be a minor problem -- a crack in a gasket and a sensor working improperly. The loser cruiser, with its 110,000 miles and counting, would continue to roll forward. Paid off, covered with Cubs, Blackhawks and In and Out Burger bumper stickers, a generous dent on the back door, and riddled with scratches along the sides, the van would continue to be a part of our family life -- toting kids to school, weighed down with rafts, tents and coolers in the summer, and dolled up with snow tires chugging up the mountain passes for skiing and hockey tournaments.

I thought how nice it would be if we humans had Check Engine Lights illuminate in our chests, reminding us to take it easy, slow down and mend the cracks. I think our family has been sailing along most of the summer with our invisible Check Engine Light on and yet we haven't pulled off the road, popped the hood and let the cloudy steam rise off the boiling engine to get a better look at why we feel so out of sync. It's a luxury we really haven't had.

Summer has been hard. I am feeling lost in the long days. I spend most of my day with Sean trying to keep his moods even, his body regulated and his thoughts happy. Meanwhile, I have neglected my writing, chores and most sadly to me, my friendships. It's as if we have to put so much on hold. Our child doesn't do well in crowds, doesn't like to be in public much, can't socialize well and even trips to the pool or parks have ended disastrously with Sean being out of control or yelling or hugging strangers.

My older son is struggling with this. Sean is getting bigger. He is harder to manage. And he's quick and fast and can't control his impulses. We take turns watching him but inevitably he gets away from us, whether its jumping on a person sitting on a bench or hugging a woman's knees, most trips out can end badly.

My husband and I have grown thick skins -- practically Teflon. By my oldest is getting to a point in his life where he is much more aware of the dynamic and struggles with the love he has for Sean and the embarrassment that he often feels at how his brother behaves. It breaks my heart sometimes. I know my oldest is kind and good and tolerant, mostly because he has had to be in order to be a part of this family, but I can't help thinking how some days must be very tough for him and how I wish I could make it all better.

So I guess we all continue down this bumpy road, our Check Engine Light beeping and blinking and yet summer doesn't afford us the time or opportunity to fix ourselves. We have to keep making little quick mends until fall when school begins and we have the luxury of time. Twenty seven days and counting...