Keeping the Faith

I have a picture of Sean in his baptism gown -- silvery white with puffed capped sleeves and lace trim. We took him to the church, waited in line with the other parents, to have him blessed in the cleansing waters, bathed in God’s benevolence. It was not so critical for me to participate in the sacrament but more about keeping a promise to my Irish mother that Sean would receive the sacrament -- God forbid he die in infancy and succumb to living out eternity in limbo caked in original sin. She had already administered her own baptisms of sorts on each of my children. When seeing her grandchildren for the first time she wet her fingers in holy water that she had brought back from Ireland. She did the blessing herself. It was no harm to me or the boys and I am a sucker for tradition and ritual. Besides, my mother’s brand of Catholicism fascinates me -- a mix between scripture, mythology, superstition and folklore.

As a child, if I lost something, my mother would say confidently, “I’ll pray to St. Anthony.” If it was a small miracle needed she would pray to St. Jude. If someone was having trouble selling their home then it was an appeal (and a statue burial) to St. Joseph. Saints were housed like a spice rack in my home -- sprinkle one to flavor a moment in our lives. I am drawn to stories, real or not. This idea to explain life’s mysteries through religion or mythology, literally or metaphorically, from a literary standpoint is appealing to me. It is a part of who I am. It is the core of my imagination.

We were raised to go to mass every Sunday unless the Chicago Bears were scheduled to play a game. Then my brothers were allowed to miss or go on Saturday evenings -- for them God ranked right behind the Bears. My brothers, sister and I would try to attend the mass with the priest who chain-smoked. His masses were quick, succinct, his nagging nicotine addiction hurrying things along and we were out in no time. We also would go to mass over at the chapel in the Catholic hospital. Afterwards, we would go to the hospital cafeteria and get donuts and orange juice.

As we grew older, we found ways to cheat out of church. One of my brothers would drive us to the parking lot of St. Julian’s Church. My sister or I would get out of the car, take a look around to see who was at 11 o’clock mass, check which priest was scheduled to say mass, grab a church bulletin and head back to the car.

“It’s Father Stephen and the Driscolls and Pat Edson were there. Let’s go get breakfast.”

Back at the house, we could hand over the bulletin (our proof that we went) and pass our mother’s quiz about mass. My mother used to go to mass everyday. When her mother died she stopped going pretty much all together.

There is no St. Kathleen, my given Christian name. Obviously, I won’t be filling those saintly slippers anytime soon -- I'm certainly not vying for the title. Not to mention no one could confuse me for a Saint, that’s for sure. There was a St. Catherine of Sienna who, for three years in her youth, received celestial visitations and had conversations with Christ. She later went on to care for the sick and dying. I don’t know much else about her butI know for certain that I am not named after her nor created in her likeness.

What I do know, is that from an early age, Sean has been drawn to water -- whether it be the highly chlorinated pools, rocky rivers, muddy lakes or the salty ocean. When he swims, his arms slicing in out of water, I imagine the sacrament of baptism, that he is drenched in enlightened waters, bathed in God and Mother Earth’s mercy and grace, immersed in healing, and his disability, for a moment, shedding from his skin and mind. Then I imagine him emerging in new light, in a new day, a new world where he is not thought of as a broken child or a throwaway, but rather a sage of sorts, a boy who can teach us to be kind and tolerant and loving -- to really capture the essence of Christianity that is so often missed in organized religions -- to be understanding and charitable, to practice tolerance and compassion, without judgment and to love freely without conditions. Leave the fire and brimstone in the hearth where it belongs, not in the minds and on the tongues of the angry and misguided. I'll take my faith sunny-side up.

I Don't Like Mondays

The Boomtown Rats got it right when they sang “I Don’t Like Mondays.” For most of my life, Monday has been a hurdle -- a cyclone fence topped with barb wire -- not the beginning of a new day or at fresh start to the work week. I have started and failed many a diet on a Monday. In my twenties, I pulled myself, completely unwilling, out of bed to catch the 125 city bus in the park for work on Mondays. I have ended most vacations on a Sunday only to wake Monday to the discombobulating racket from the alarm clock getting the boys dressed and fed and out to school by 8 a.m. still in a complete fog.

Mondays my husband gets an early start -- his cell phone alarm buzzing and ringing on the windowsill -- my oldest son, sleeping on the floor after having a bad dream mid-night, and Sean wide-awake, sitting on the back of my legs saying over and over, “Mommy, wake up.”

I can’t hand him off like a baton to my husband, he is not running in this race today. He’s participating in a different race, better known as the rat-race. On early Monday mornings, it’s just Sean and me, getting ready for an intense sprint.

Even when I was a kid, I despised Monday. My sister and I, still to this day, laugh about the ticking sounds emanating from the old Zenith on Sunday evenings -- my parents Pavlovian response to the tick-tocks -- clearing dishes from the table just in time to collapse into the sofa and watch 60 Minutes the Newsmagazine Show. For my sister and me, it was just a painful reminder that the weekend was closing -- all work and no play in front of us. Time to finish up homework and get our clothes ready for tomorrow -- for Monday. Time to start the cycle all over.

Mondays stretch out for me like the vast wilderness, the landscape perilous, the geography problematic and the dangers uncertain. And yet I have no other choice but to journey ahead, picking my feet up and throwing them forward. Mondays can set the tone for the whole week -- a difficult Monday can mean a difficult week. And Sean, he is the Magic 8 Ball who can determine what the future holds -- Ask again later or Not likely or Yes. I don’t think he wants to have such power, but the truth is, he does. Our lives are often mingled together -- a good day for Sean equals a good day for me -- an equation that relies wholly on the parts equaling the sum no margin for error, no rounding up. I say this with math not being my strong suit -- disappointing since my father is an accountant and one brother is an actuary.


So today was bumpy. Some fits and crying that didn’t make much sense. I let Sean ride his bike, careening across a large expanse of black asphalt, his legs pumping with purpose and power. He became whiny shortly after.

The afternoon we went to the swimming pool at a nearby college. Sean flirted with the pretty young co-eds and said to one of them, “I am going to marry you.” His brother turning scarlet behind him. They laughed and let Sean splash them. Not long after, he asked to leave because the water was cold, his body pimpled with goose bumps. In the car ride home, his brother practiced his guitar and Sean made up songs and then complained that he was too hot.


So now Sean and I are in the kitchen and he is talking about strawberry season,


“It’s over, Mommy. Strawberry season is over. No more strawberries.”


He is commenting on the empty strawberry patches in our and our neighbor’s yards. Truth be told, there hasn’t been any strawberries since late June, but this hasn’t stopped Sean from mentioning it everyday since. It’s blackberry season. Tomorrow on our walk we will pick the wild blackberries, careful of the thorny branches. I can’t wait to see Monday in the rearview mirror. Welcome Tuesday.

All The World's A Stage

The other day I called my husband at work, my nerves frazzled. Sean was having a tantrum for no reason that I could think of. If I don't know why Sean is upset there is no way to talk him down, to give him the peace of mind he so desperately needs. He spirals out of control until I can't discern any useful language. He grunts and screams, his arms and legs flailing, completely frustrated. I sent him to his room where he stormed off, yelling and crying and falling to a heap on his floor like a pile of laundry.

Add to that the toilet in the kids' bathroom wasn’t working properly. It kept running and filling up with water and the shut-off valve was intent on ripping off the skin on my palms as I tried to wrestle it shut with not much success. I couldn’t keep it together. It was Sean’s third tantrum and it wasn’t even noon. I was afraid that I was going to lose it -- scream and cry just like him and knew that if I did anything like that, the situation would be completely unmanageable.

After I sent him to his room, I began shutting all the windows to keep the hysterics contained to our home. I went down to the laundry room and paced back and forth taking deep breaths and covered my ears in an attempt to block out his yelling and screaming.

Then the thoughts came to me, crawling in my head, making the sadness almost unbearable. What is the point of this? Why does he have to suffer? Why do we have to live like this? I realize it’s pointless. It’s entering that dark black hole, circling the rim, then spreading arms wide open and falling forward into nothingness -- and who knew nothing could feel like a thousand pin-pricks. I called my husband and said plainly,

“I cannot do this anymore.”

My husband is having a stressful time with his work. His only employee gave him notice and he’s scrambling to fill a vacancy that he really can’t operate to long without. His wife can’t hold it together anymore and he can hear the not-so-faint sounds of his hysterical son in the background.

“Hang in there,” he says but he knows whatever he says will not be the right thing to say. In fact, he can’t win for losing.

“Hang in there?” I say, quietly seething. Not so much at him but just at everything. “I have been hanging in there for the past six years. Something is going to have to give.” '

Days like that are hard to balance in my weary hands. Like a heavy pane of glass, teetering in my tight grasp, every muscle cramped holding it steady so it won’t crash into a thousand tiny silver shards.

Sean eventually calmed himself down. He has gotten much better at this. When he came out his eyes were swollen from crying and his breath was quick and shallow.

That evening, we headed to our neighbor’s home. She is lovely and kind woman who has offered to have Sean be a part of a childrens’ theatre group that she teaches during the summer. This group is made up of seven neuro-typical kids and Sean. It was the debut of their play that they had worked on most of the summer.

I had put on some mascara and lipstick, pulled my hair back trying to hide the stress of the day. The room was packed with kids and parents and I was soaking with sweat, so afraid Sean wasn’t going to be able to do it.

He did it. Just fine. He had two small parts where he danced with the other children. His excitement was palpable. He do-see-doed with another little boy and he was perfect. My eyes were stinging with tears and I couldn’t stop them once they started. I have never felt such a surge of love for him as I did watching him with the other children. In the last song he danced with a red scarf, tugging it through the air, the gauzy material floating like a dream. He knew what to do and he was doing it. He had transformed in front of me -- not the autistic boy in his own world but any boy in a bigger world. He was accessible. It was a beautiful sight.

When the play was over I met up with my husband outside. He smiled at me and I could see he was overcome by the moment.

“He did great.” he said. It was the same look he had when our older son outplayed an opponent in hockey or lacrosse. He was proud.

I must have looked crazy. My face all red and wet with tears, I had an uncanny resemblance to Alice Cooper--my mascara puddling on lashes and cheeks. I should’ve known better than to put on mascara. When I found Sean, he grabbed my hand and he was back to his usual hopping and pinching the other kids. When we walked home he looked up at me and said,

“You sad, Mommy?” worry creeping into his little voice.

“No, Sean, not at all,” I said, my breath choppy, overcome with such a great deal of emotion. “I’m just so happy. So happy that you did so well. You were awesome, little man.”

The truth is, I saw my child in a different light. He was brave and eager, not afraid. He kept asking, “Is it my part, yet?“ his heart thumping against my hands as I held him back.

"Almost, Sean. Almost," I said rubbing his tight shoulders.

Earlier that day, in the heat of the battle, I questioned what was the point of this life and what lesson was there to be learned. By evening, my face still flushed, I came to the realization that despite all the challenges, this life of mine, these children of mine, this family of mine are meant to be. They are all that matter. It’s not something I can put into words. It was a profound and certain feeling -- something that makes me less afraid and hopeful for better days ahead.

Off We Go...

I found a picture of Sean and me at the Cliffs of Moher in County Clare. I am hugging him so tightly, his hair whipped by the heavy winds, his pink lips bent with laughter, behind us, the Atlantic Ocean pounding against the cliffs. The swollen clouds above us lingered, spitting rain and coldness on our necks. Sean was two years old, feisty and unpredictable. I am smiling but I know how scared I was that he’d be swept away by an indiscriminating current of air. I showed it to my husband and said,

“Remember when we took him on that long plane ride, when he was just two, to Ireland? What were we thinking??” We weren’t.

It was a family trip --my parents and all my brothers and sister and their families were going to the wedding of our cousin in Galway. We didn’t think twice. When we arrived at Dublin Airport Sean was a mess. His big brother, only four years old, trying to calm him as we waited for what seemed days in line at immigration. He cried, screamed and squirmed, too much for us to handle with the luggage and car seat. We ended up abandoning the car seat in a corner near the baggage claim area in order to free up our arms to help contain him.

We took a bus that dropped us off too far from our hotel. We were like the walking wounded, jet-lagged, strapped down with too much luggage, carrying one child and pushing the other in a stroller down the uneven streets of Dublin looking for our hotel. When we did check-in, we collapsed, exhausted while Sean, still wide awake, ran around the room, climbing on chairs and jumping on the bed. The three of us managed to sleep through it all.

We took Sean and his brother all over Ireland by bus. Up to the north, to the county of Donegal -- a little town called Drumkeen where my mother was born and lived for a time. We stayed with cousins who adored the boys, especially the little red-headed leprechaun that never stopped moving. We caught another bus down to Galway to stay in a little carriage house we rented in the neighboring town of Clarenbridge. The boys loved it but my husband and I felt that we were living in the Keebler Elves’ cottage, with tiny beds and chairs and a mini-stove. The rose bushes spilled over the fences and the boys ran up and down the gravel with a soccer ball. We went to the Galway races, hung out in the pubs and had lunches with family and old friends of my mother’s. Finally we took yet another bus after the wedding back to Dublin where we caught a flight to Chicago.

There is something completely innocent and blissful about not knowing. Sure Sean was a handful, but he was so clever and bright and beautiful. We had never suspected that he might be autistic. In a way, I’m glad we didn’t know. We might have never taken that trip. My children and their cousins played on the same land that my mother’s ancestors lived and loved and died. What a gift to share with them. We made the trip, unsuspecting of what was happening on the inside to our lovely child, not realizing that little by little, he was slipping away.

He remembers the trip. Or maybe it’s just the stories we have told him, creating pictures in his mind as real and alive as anything. I show him photographs of us in the hills of Donegal, where the land comforts the sea, the hills thick with heather.

“That’s me,” he laughs, “that’s me where Grandma’s people come from.”

Once the Druids and Irish pagans roamed those same hills, chanted around stone circles worshipping elves and fairies; and in the glossy pictures my children tumbled through those ancestral lands, carrying the humid wet winds on their shoulders, unaware of the sacred ground beneath their tender feet or the sweet breath of earth-gods rising up from the holly and hazel.

Tree Boy

Wednesday night I tagged along with my husband and Sean on their hike. Usually twice a week or more, my husband takes Sean over to Tryon Park -- a state park located in Southwest Portland. It was raining (unusual for August in Portland) and the trees and ferns were damp and the trail had turned muddy. Sean set off -- running and then stopping suddenly to climb into the arms of a tree. Sean knows each of these trees as he has hiked this area numerous times. He pulls himself up against the slick tangle of branches, careful not to crush the giant sticky slugs that are parked all over the trunk and arms, and he finds a sturdy bough. He climbs onto it and affectionately hugs it, his body one with the tree, camouflaged in moss and wet leaves, tickled by raindrops that make their way through the forest ceiling.

It is tender to see this. A boy happy with nothing else but the dependable muscle of a tree, embracing it like an old friend, his cheeks wet and dirty and a smile peeling across his face. I have to stop myself from wiping his face, pulling his wet, damp shorts up, tying his shoes or shouting after, “Careful, watch out for the tree roots!” I think he could navigate this forest in the dark, alone. There is a connection between him and this lush secret garden, a force pulling him through, the familiarity of the trees and the paths -- he feels more at home here than in the rest of the busy world.

He finds the little trails that bring him down to the creek, branches slapping after him. He immediately jumps into the water, a baptism of sorts, his gym shoes filling with the creek, and bends his head down to swirl his hair, his head soaking wet and water running into his eyes and smile. My husband watches him closely; he and Sean have done this probably a hundred or more times. This is their place.

“Daddy take me but you can come.” he said to me when we left. I’m a visitor by invitation only. I am grateful to have come along.

When we come home I scoop him up in my arms, burying my face into his tummy, cautiously, like the belly of a kitten. He is mine. He commands me to dance. “Dance mommy.” he says laughing, twirling in hypnotic circles, his arms open wide. I twirl with him, letting go of the day, just me and my boy, laughing and spinning.

Being Present

Sometimes I carry fear between my throat and the back of my tongue, like orange safety cones slowing me down, reminding me to be cautious but making my breath sluggish and my lungs overworked. The panic catching and closing my throat. Hope for me is sometimes like floating soap bubbles, glossed with rainbows, but far too tender, easily popped between careless fingers or a wayward branch or just simply out of my reach.


My son can’t read. He can’t write legibly. He can’t tie his shoes. Or wash his hair. Many times he puts his clothes on backwards or inside-out. What I fear most is what will happen to him, down the road. I can’t imagine my life without Sean but I also think he couldn't imagine life without us. We are a house of cards, each needing the gentlest support from each other. If one of us falls then we all do.


Sean is teaching me to live in the present by example. The past is in the past and the future is a luxury that I can’t afford. What is certain is the littlest moments, the ruffled red hair peeking out of covers in the morning, the boy spinning on the wooden merry-go-round, back arched, laughing or little sunburned arms and cheek smelling of chlorine. This is what I have. Today.


I've spent a lifetime musing about the future or over-analyzing the past. Taking so much for granted. Moving with speed and greediness, forgetting that life is finite, wishing it away or letting it slip through my fingers like wind -- until it is gone, distant memories that make me incredibly nostalgic.


I recently wrote this poem about Sean when I was thinking about how much he enjoys life without caution or concern. He swims in the ocean, rivers and lakes without much thought. As a toddler he climbed high up in trees or over fences, balancing his small body with perfect ease. I want him to be safe. I can’t bear to think of him hurt or scared or alone. And yet I admire his bravery and how he embraces the moments -- without over-thinking the past or future. He only knows how to live in the present, unencumbered and free.


A Bird in the Hand

I held him tenderly
a ruby throated hummingbird
his racing heart too quick
and impatient for this world.

He begged me to unfold his gossamer wings
Tucked gently behind angel bones
To lift him into humid air
Toward flowers drenched in nectar
His body growing restless

In my palms he thrashed and scratched
His escape futile.
I am far too selfish
To ever let him go.

Katie Donohue 2009

Belonging

The weather has changed sharply. Last week it was topping out at 107 degrees -- Sean and I scrambling for relief in the public fountain park and the local pool -- and today the thermometer is struggling to make it to the seventy mark. It has just passed mid-summer, as far as the school calendar goes, and the school year is less than five weeks away. And honestly, I am worn out.

Sean needs constant movement so we have taken advantage of going for long walks in the cool mornings, just the two of us and the incredibly irritable scrub jays arguing in the treetops. During our walks, Sean skips and turns and breaks out into full-on sprints. He loops back to me and asks me more of the same questions,

"Why you have a nose?” “

What was your Grandma’s name?", and

What cartoons did you watch when you were a little girl?”

Sometimes, exhausted from this, I don’t answer him and he says to himself, “God gave you your nose. Margaret is both your grandmas and you used to watch Felix the Cat.”

Over and over this routine goes. We stop at a park in the middle of the path and Sean heads to the monkey bars, his arms and shoulders already showing signs of muscular development as he effortlessly pulls himself back and forth across the bars. He swings on the tire swings and goes down the silver slide. It is early enough so we have the park to ourselves. He starts his questions again.

"What is your Papa’s name?”

“How many people are named Mike?”

“Where is my Grandma from?”

I answer him (“Tim, Lots of Mikes, Ireland”) although sometimes to myself I think, “Please stop talking. No more questions.” This thought is quickly followed by a dose of guilt. He is my child. Clearly, it gives him comfort to go over and over with this routine. Be a good sport and play along.

Sean does not have much in the way of friends. Most children don’t know what to make of the boy who is clapping and hopping, making odd noises. There are few, if any, camps and activities for children like mine. He wants friends and he wants to play sports (“Daddy, what sport can I play?“ He asks when his brother is dressed in equipment for hockey or football or lacrosse) but he struggles to do either. Sean has to work twice as hard (if not more) than his typical peers. He is wired differently. Things we all take for granted are hard work for him.

As a parent, it can be extremely sad to see this -- a little turtle trapped lying on it’s shell, it’s small arms and legs kicking up in the air. I wish I could “right” it for him (and I wish it were that easy) -- place him correctly on the ground and watch him scatter away with an army of friends or onto a baseball field with teammates. What comes so naturally for my older son is a complete puzzle for Sean. He wants it but he's not quite sure how to get it.

It can be a lonely world for him. When I am annoyed with his questions and feel crowded by his constant company I will remind myself that he has the same needs as any of us -- the comfort of others, the need to be listened to and the desire to belong. It’s really that simple.

Locked Out

Lately, Sean has been removing the knobs off of the kitchen cabinets, dresser drawers and door handles. I don’t think he’s intentionally trying to make us go mad, but nonetheless, we slowly are. He is also locking doors; the doors to our bedrooms, to the bathroom, the sliders to the kitchen and the deck, the front door and garage door. We find ourselves constantly stalled -- grabbing a knob that catches on the lock and keeps us from moving forward.


My older son has put pennies underneath the trim of all the doors.


“Look, Mom, if you get locked out there’s a penny right under the door.” he says removing the penny and sliding it into the lock to unlock it.


He grins, impressed with his solution. He is such a flexible boy -- laid back and forgiving. He tries to work around it, while my husband and I bubble over with frustration.


“Sean! Why is my door locked?” I yell, my arms filled with laundry that needs to be put away.


He hustles up the stairs, grabs my thigh and says breathlessly, “I’m sorry, Mommy. I love you.”


“Sean, do NOT lock my door anymore. Understand?”


He nods his head but his focus is waning and I know that it is a struggle for him to manage these compulsions. I know, at that moment, he means it. He will not do it. But minutes later, he has given into the compulsion, his promise lifting like fog and my door is once again locked.


When my husband parks his car in the garage and cannot enter the house, he bangs his fist and shouts, “OPEN UP!” He has had a long day, the weather is unbearably hot and his entrance to our home has been hindered.


I open it up and he looks frustrated. “Why are all the doors locked?”


I look back helplessly, “Don’t get upset with me, I didn’t do it.”


He lowers his head, wipes his brow with his hand and says quietly, “I know. It’s just so annoying.“


We both know this. We are always having to manage our stress -- like ice building up on street curbs, we have to remember to spread the rock salt, lower the temperature, melt away the hazards. We have to work as a team. There are the moments, “You’re blaming me!” or “I can’t be responsible for him 24/7.” But at the end of the day, we are on the same side -- we just want our boy to move forward -- to unlock his potential.



This will fade. He will move onto something else. Last month it was switching the lights off and on and off -- our house looking like a European disco at nighttime. Before that he refused to use his fingers to carry things, he pinched his toys between his wrists. And before that he used to lick his shoulder every couple of minutes.


When I told him not to do this, his eyes grew wide and he said, “I don’t have to do it?”


It took everything in me not to cry in front of him. Poor little guy. When he said that it was like passing me a decoder ring or showing me on a map the strange place where his mind roams.


I have to remember this. It isn’t deliberate. He is just a boy with small shoulders and a heavy sack strapped to his lean back. He does his best to carry it but sometimes he needs a break. He needs somebody to lift the burden, to put it on her stronger, larger shoulders and to occasionally lighten his load on this journey.