Thursday, December 15, 2011

A Different Kind of Christmas

Last year Christmas was a prolonged and festive occasion, with my older brother Jim and his family from Maryland, plus Kevin and Vinny.  It was a reunion after many years of not being together on Christmas.  This year, many factors will make it a more mellow holiday.  Jim and his family won't be able to come to New Jersey.  It's the first Christmas for us without Vinny's Mom.  Neither of us felt like getting a tree (or decorating it) so we are abstaining. But it's okay because the most important part of Christmas exists no matter what is happening in our lives.

There's a part of Christmas that has always been about Kevin for me.  He's our perpetual child, always excited by presents of screwdrivers and coloring books and turned off by socks.  He lights up the morning with his gratitude for something as simple as a box of pens.

But Christmas isn't about Kevin. And I'm aware of a deeper meaning to Christmas this year.

I am so thankful to have a more palpable faith in God.  I have worked to get there, focusing on my relationship with Him.  But I know that much of my connection with God is a result of grace - God's grace, that I have not earned and could never repay.  I've tried to pass it on a little bit, by participating more in food and coat drives, keeping the focus off myself, which isn't always easy.  But I know that the most important thing for me to remember this year is God's gift to me of his Son.

Merry Christmas!

Friday, November 25, 2011


That's how Kevin says Thanksgiving.  He knows it is the day when we eat turkey, stuffing and cranberry sauce.  He knows we go to "people's houses."  He doesn't know about pilgrims or Indians.  But he does know how to spread gratitude.

This year, Kevin, Vinny and I are spending the weekend on Long Island and it's the longest I've spent with Kevin in a while.  I was a little nervous initially about the three of us being together for four days.  Kevin has not been himself on our last few visits, shaking is fist and grabbing my shirt if he is not getting his way.  He has also looked at us several time as though he doesn't understand what we are saying.

But  things are different this weekend.  He's bubbling over with excitement for each activity that we do.  He has told me a dozen or so times a day that he loves me.  He and Vinny are joking with each other, usually at my expense.  It is a great relief to see him back to normal.

And it appears that the answer to his behavior issues may have been something very simple.  He had a lot of wax in his ears.  It must have been uncomfortable for him and the doctor said he could barely hear out of his right ear.  Something so simple that created such a difference in him.  As with most of his physical symptoms, he couldn't verbalize what he was feeling, but it had to come out in some way.

So this Sanksgimmin, I am grateful that Kevin is rubbing his hands together and giggling, a sign that he is ecstatic about what's about to happen. I am grateful for the vanilla ice cream with chocolate sauce at dinner tonight - Kevin's favorite treat. I am grateful that Vinny loves and accepts Kevin as readily as I do.  I am blessed.

Tuesday, November 22, 2011


I traveled to Gaithersburg MD today – a trip that includes Amtrak to Washington, DC and then driving from Union Station to Gaithersburg.  The train was coming into Philadelphia when I realized I had left my GPS back in my car in Newark.  Anxiety set in.  I have not been able to find my own way from Union Station to Gaithersburg in the three previous times I’ve traveled there.  No problem, I thought.  I’ll just grab a Garmin from National Car Rental.  But no, when I arrived at the counter in Washngton, they were out of GPS units. 
Out of desperation, I asked for a map.  A map. A piece of paper with writing too small to read and creases impossible to refold.  As I exited the parking lot, I reached my first point of indecision.  Left or right?  Not even Mother Nature was cooperating, as a foggy rain prohibited my usual backup – the direction of the sun.  I knew I needed to go west then north.  I took a guess – a 50/50 shot.   I drove in a direction that felt like west.  My map showed some wonderful landmarks, but neglected to include important information like H Street. Then,  I saw a road sign for I-395, which was also on my map.  I was feeling more confident.
As I drove away from office buildings and landmarks into a more residential area, I became a little concerned, but I was also on a conference call simultaneously, so I kept driving, knowing eventually I’d hit the Beltway.
Which I did.  The southeastern part of the Beltway.  Almost directly opposite of where I was supposed to  be.  So much for my female intuition.
I knew based on the big loop of the Beltway on my map that I was going to be late for my meeting.   After calling to make my apologies, I drove through the rain, around Washington, making sure not to take the exit for 95 heading to Baltimore.  I arrived thirty minutes late.  After the meeting, I Google Mapped my way back to Union Station. With my shorthand directions, I arrived at the National Return lot in 45 minutes with only one wrong turn.  It was kind of a Garmin-lite approach.
I am digitized.  I can no longer effectively read a map.  My GPS has become as valuable to me as my wallet or my cell phone.   We often say, “What did we ever do without GPS’s?”  I remember the arguments my parents had when my mother’s errant directions landed us in Connecticut when we were supposed to be in Upstate New York.  She used a map that we got free from the Mobil station.  That’s what we did before the GPS – we got lost and argued.
I don’t mind being dependent upon electronics to guide me through life.  I just hate having to remember to take them everywhere.

Thursday, November 17, 2011


     There's no place like home.  When I'm on a business trip, I can't click my heels three times to get back to New Jersey.  Every northern NJ resident knows you don't fly out of Newark on a Monday or back on a Friday.  Wind over 15 mph closes one of the runways.  Every return trip home is an adventure.
     So when my 5PM flight home today was cancelled and I was moved onto the next one (8PM), I was prepping for a long lonely night in the Norfolk airport.  Then, a miracle happened.  The 2PM flight was delayed until 3:30PM.  I was put on standby and actually got on board.  I arrived home earlier than originally scheduled and was on the couch by 6PM.
     It's great to be home, but it's even better to be home early.

Wednesday, November 16, 2011

No winners

     I was speaking with a friend who is a teacher at Penn State.  Hearing the fatigue in her voice, the pain of the situation that has impacted so many in her classes and her life, it reminds me that in the realm of childhood sexual abuse, there are no winners.  And in addition to the pain of the victims, there is much collateral damage in a situation as public as this.
     Many have compared the situation at Penn State to that of the Catholic Church.  My friend reminded me of the key difference in the two scenarios.  While the institutions share the scourge of pedophelia, heads rolled at Penn State.  Consequences were meted out to those in authority who covered up the alleged abuse.  We Catholics are still waiting.
     I pray that we never have to hear about another sexual crime perpetrated on a child, but I know that's unrealistic.  So the best we can hope for is cover-ups to be uncovered, injustices to be made just and those who are abused to find healing.

Monday, November 14, 2011

Low Maintenance

     Kevin requires help.  He needs someone to buckle his belt because he can't find the hole to put the little metal thing through (what is that little metal thing called anyway?)  He can pour milk unless the carton is too full, in which case a river of dairy results.  He cannot tie his shoes, so I buy shoes with velcro straps.  If he walks across uneven ground, he loses his balance easily and panics. Someone needs to hold his hand.  He doesn't know how to count and can't read, so a staff person in his group home must mete out his pills for him.
     Yet compared to me and most people, Kevin is low maintenance.  He requires three things to make him happy - conversation, reassurance and hugs.  Four things if you count cheeseburgers.  I look at so many normal adults who are miserable and spend thousands of dollars to try to get happy.  It is a shame that we can't ask for what we want as readily as Kevin does.
     Kevin has acted out lately at his group home.  We think it is because of changes in personnel there, but I can never know for sure.  Asking Kevin what is wrong is futile - "nut-in" is his response.  I do know that some improvements over the last week seem to be connected to one staff member in particular.
     After I took Kevin out to breakfast on Saturday, I brought him back to his house.  Theresa was there to greet him.  He gave Theresa a hug and she shouted, "Hello O'Connor-boy," Kevin's favorite nickname.  She asked about our outing, told him she loved him and accepted another hug.  My brother voice was squeaking he was so happy.
     So as much as he may seem to require a lot of work at times, Kevin's needs are pretty simple.  It is another life lesson from him to me.

Tuesday, November 8, 2011


     Vinny and I celebrated our anniversary this past weekend.  In other years, I would have pictured an exotic meal, perhaps a weekend away, certainly flowers.  But this year we marked our years together in a simpler way.  We went out to dinner, but brought along a good friend who has been a large part of our lives over the last few years.  On Sunday, we went to church, where we were lectors.  I felt the presence of God in my life and in our relationship.  In the afternoon, we ventured to western NJ to a wolf preserve that Vinny had read about in the paper last week.  It was a symbol of some of the things that enable us to balance out each other.  I don't have a lot of time to read the paper and Vinny keeps me apprised of what's going on in the world and local events to attend.  At the wolf preserve, the combination of the loose gravel and rocks and the angle of the path were difficult for Vinny to manage with his bad ankle, so he leaned on my shoulder.  It was a simple day in our complicated lives and it was perfect.

Monday, October 31, 2011

Home is Where the Heart Is

     I live in New Jersey.  I should be suffering like my neighbors, without power, longing for a hot shower and a little mindless TV.  But I'm on a business trip, in a comfy hotel where the TV is off because I choose to leave it off.
     But my heart is back in NJ.   My neighbors tell me that I've lost a tree in the backyard and my front yard is full of large limbs, scattered like pickup sticks.  I can picture all this, but I want to really SEE it, to understand first-hand how much devastation there is.  I wonder how the inside of my refrigerator smells and if there's any sort of leak anywhere.  I want the comfort of knowing that whatever disaster I envision in my kitchen, it's really not so bad.  And on some level, I want my own war story to tell in years to come of how I survived Snotober.
     Kevin has been vacated from his group home to a hotel again, just as he was for Hurricane Irene.  I don't know his room number though, so I haven't been able to talk to him this afternoon.  There isn't a doubt in my mind that he's fine though.  Really, not one doubt.  Really.
     So sitting here in my hotel room, I am warm and showered and I want to go home.

Thursday, October 20, 2011

Movie Night

     Kevin enjoys going to the movies, mostly for the popcorn I think.  We have gone to several movies - comedies, cartoons, action films.  Sometimes he pays attention, sometimes he falls asleep.  The sheer pleasure of accompanying others to an normal activity, being with his Sissa, having a treat of popcorn and soda - these are the simple pleasures that my brother enjoys.
     A few months ago, we went to see a movie at our local Indy movie theater.  They show some artsy stuff, but this was a comedy, so I was pretty sure Kevin would enjoy it.  We settled into our seats, a large popcorn on my lap to share with Kevin, a small diet Pepsi in his cup holder.
     The movie started and the actors began speaking.  I almost laughed out loud, but not at any comedy in the movie.  I realized that I had taken Kevin to a foreign film, German, with subtitles.  Kevin, who cannot read and certainly doesn't understand German, was staring at a screen with no idea of what was happening.  The evening was not a total waste; he got in a good nap.

Saturday, October 15, 2011

Being a Parent

     I wonder many times why I never had children.  If I delve deep enough, I produce five or six potential reasons.  Being single isn't an excuse these days.  Now that the fertility bus has left the station, it seems like a moot point.
     But there are times like this past weekend that show me I could have been a parent.  I possess the number one attribute required for any parent - worry.
     Kevin is my pseudo-child.  I feel responsible for his well-being and happiness.  I call him everyday, because no day seems complete without saying "I love you, O'Connor-Boy."  But I also want to gauge his contentment (i.e. - how well I'm doing my job), by the only barometer I have - the timbre of his voice.  High-pitched and elongated words are good.  Quiet, low-pitched and staccato are red flags.
     When Kevin's group home called me last week to report his misbehaving/aggression, I asked to speak to him.  A barely audible "hi" greeted me.  I did my best to reinforce that good behavior yields rewards.  Once I used the magic phrase "going out to dinner," he perked up to his usual self.
     But I worry.  Kevin never has issues during the week at his group home, only on the weekends.  It is a combination of frequent staff turnover and a low activity level compared to weekdays.  If I spent all day watching TV, I think I'd go a little nuts too.  So I need to step in, be the guardian, be the parent.  I suggest ways to coax Kevin to good behavior and activities that he can do on the weekends.  He likes to hear that he's a gentleman.  He responds to rewards.  Scolding has never worked.  It's hard to get a 160 pound man into a timeout if he doesn't want to go.  I've tried. 
     And still I worry.  Am I doing enough?  What if his behavior continues, escalates?  When will the next phone call come?  What if they kick him out of the house?  I try to keep myself grounded in reality, to trust that I'm doing everything I can, but I want Kevin to happy 100% of the time.
     So I really am a parent after all.

Friday, September 16, 2011

Day One in Italy - Are We There Yet?

     We arrived in Rome at 7:30am and rented a car to drive to Sorrento.  I was the designated driver of our Volvo station wagon because I drove a stick shift car thirty years ago and Vinny hadn’t driven one in forty-five years.  Only George Clooney can afford an Italian rental car with automatic transmission.  My first act behind the wheel was to back the car into a guard rail, almost smack in front of the Hertz counter.  I surveyed the damage, but was unable to distinguish my scratch from the others on the back bumper.  I then went to the Hertz office to complain about the car’s gas tank being only ¾ full.  I heard a ruckus outside the office and a man came in to tell me I had forgotten to put the parking brake on.  Vinny put his foot out of the passenger side, keeping the car from rolling into the wall.  My mission with Hertz complete, I threw the Volvo into first gear, screeched my way toward the exit, Vinny hanging on as we looped around the parking garage.
     Between Rome and Sorrento lies Napoli, famous for its Neapolitan pizza.  As long as we were somewhat going by the city of Naples, Vinny suggested we find a place for pizza for lunch.  We had the guidance of the Michelin Italy book for the names and addresses of the most authentic ristorantes.  And we had our GPS.  What could go wrong?  We didn’t realize that much of Naples is the Italian version of the South Bronx.  More famous than the pizza in Naples is the garbage, which can pile up for weeks during a strike.  The locals dump garbage in the breakdown areas along the highway.  By the time we arrived in the old city of Naples, we were skeeved out, tired and my left foot was cramped from jamming on the clutch in traffic.  We found one of the pizzerias, but there was no parking and we moved on to Sorrento before I burst into tears from fatigue and frustration.
     Two hours and one hundred shifts from second to third gear later, we arrived at the Hotel Aminta.  It is in the hills overlooking Sorrento , which lies in a horseshoe along the Bay of Naples.  In the distance, Mt. Vesuvius was shrouded in a haze of late summer humidity that afternoon.  We stood on our balcony overlooking this scene and were anxious to explore the sights.  We had been awake for 27 hours. 
     Having heard so much about the Amalfi Coast and Positano, which was a mere 12 km from Sorrento, we jumped back in the car to drive there.  Whatever you may have heard about the roads on the Amalfi Coast is an underestimation of how crazy the driving is.  Hairpin turns abound as you travel along the curves at the edge of the mountains.  Buses, cars, trucks, scooters and pedestrians all vie for the roadway.  Whoever has the most guts wins.  Scooters pass on the right and the left, squeezing into the smallest space in the steel menagerie. 
     We saw the sign welcoming us to Positano and then the sign for the next town about five km later.  We were still high above the bay and I could see houses below us, but no way to get there.  After we turned around,  we saw a one-way street leading back into the main road and realized there must be another end to this road that would bring us to the town of Positano.  After three km, we found the correct road.  To my amazement, the road was even narrower than what we had been driving on.  As we descended, the road seemed to end in someone’s garage, until Vinny pointed out the hairpin turn to our left that continued down the mountain.  Four native men sat side-by-side on the guard rail at the turn, chuckling at all the tourists that could not find their way into town.  The road drops several hundred feet to the town below, passing houses made of stone and small B&Bs.  We found a parking garage and walked to the nearest restaurant, where we sat roadside on a terrace just down from the four men of the welcoming committee. Each course for dinner was accompanied by the entertainment of watching the cars navigate the turn to get into town.  We sipped minerale con gaza and enjoying the pink-orange Amalfi sunset.  As we continued our drive after dinner, we saw the many shops and alleyways that give Positano its quaint air.
     The drive back to Sorrento in the dark was a challenge made more interesting by my lack of sleep.  I had bravely decided we did not need our GPS that evening, since the Amalfi Coast was accessed by one road.  We traversed Sorrento three or four times, stopping at several gas stations for directions.  Down one road, we found ourselves facing an alley that fit Smart cars, but not a full-size Volvo.  I backed out of the street, accompanied by glares of annoyance from local motorists.  I mastered u-turns in and out of parking lots.  At 10PM, after thirty-two hours without sleep, we sat on the pool deck of the hotel until the ability to converse left us and we finally retired.

Pictures for this day are at:

Monday, September 12, 2011

When in Rome (or Pompeii)

     On our trip to Italy, as on all our journeys, we are finding the roads less taken.  We went to Sorrento on Sunday morning to look for a farmacia for suntan lotion.  It was a little too hot and humid for a day in town, so we took our expensive SPF 30 on a road trip to Mt. Vesuvius.  Betty, as we affectionately refer to our GPS, took us on the "shortest" route, which I am convinced means "most roundabout."  It was nearing 2:30 in the afternoon and breakfast was a distant memory.  We drove along a side street in Pompeii looking for a pizzeria. 
     The restaurant we found was a family affair, with six tables outside on a terrace and the inside dedicated to the kitchen, a small lobby and the WCs.  A local couple sat smoking and talking with the owner, who smiled and nodded at us.  We were far away from the tourist-friendly English-speaking Sorrento.  The waitress approached and Vinny said, "Pizza?"
     "No pizza, spaghetti," she started, then rambled on in Italian.
     "No spaghetti, we'd just like a pizza, " Vinny insisted.
     "No pizza, spaghetti," she responded firmly and we knew we would be eating spaghetti.  It was reminiscent of the Saturday Night Live routine of "Cheebugga" and "No Coke, Pepsi."
     We enjoyed al dente spaghetti in oil and garlic, along with crusty bread without butter, as Italians use the bread to sop up the oil.  Satisfied, we decided to be on our way.
     The waitress approached again, jabbering on in Italian, but I picked up one phrase "secondo piatti" and realized she was describing out next course.  Vinny and I looked at each other, I pictured my afternoon at Mt. Vesuvius flitting away, but we relented when she used her fingers to show how small the carni (meat) would be.
     As we waited for the meat dish, I pushed back the plastic lawn chair in which I was sitting only to find myself on the floor as the back legs collapsed.  After many apologies, the owner guided us to another table with wooden chairs for the rest of our meal.  We received a tasty dish of ground meat surrounding ham and cheese - an Italian version of Cordon Bleu.  Vinny and I tried to determine the type of meat, whether it was veal or pork.  I asked the waitress, describing the meat with my hands.  She determined that I was ordering another course and offered steak and potatoes.  We vehemently shook our heads and waved our hands, proclaiming "Fini."  She then described something else, which sounded like Pesce, which I knew in French was fish.  Again, we protested and she indicated dessert was coming out next.
     We received melone and pesca, melon and peaches, not fish, which were sweet and refreshing.  The owner's husband came over to our table to say hello.  I tried again to ask about the carni of our second course, this time using a picture to describe each course, my fall from the chair and then pointing to the second course, hoping the man would understand what we were asking.  He smiled broadly and pantomimed the preparation of the meal, complete with crying to signify onions, chopping of carrots and mushrooms, rolling of the meat around the ham and cheese.  When I asked again about the carni, he said something that sounded like Mooka and then mooed for us and we knew it was veal.
     At the end of the meal, as I went to pay the check, the waitress and the owners gathered around to ask if we were from Canada.  Over the next 15 minutes, I told them about our lives in the US through hand signals, pictures and some questions in broken English from them.  It was a most memorable lunch and such an example of Italian hospitality.  We felt at home.

Sunday, September 4, 2011

The Best Birthday Presents

     Sometimes my birthday celebrations extend for a couple of weeks as I connect with distant friends and family.  Tonight I joined with my brother Kevin to celebrate my birthday, almost a week after the actual date.
     As I've crept past the unforgiving milestone of 50 and become Kevin's guardian, birthday presents have taken on a new significance.  This year, Vinny gave me a card that brought tears to my eyes because the card and the sentiment he wrote were perfect.
     And tonight, I got another perfect gift - a dinner with Kevin.  In between courses, we took pictures, which gave Kevin the opportunity to put his hands on my cheeks and say repeatedly, "I love you, Sissa."  I taught him how to dip bananas in chocolate fondue and dabbed his chin as the inevitable dark brown rivulets oozed from the corners of his mouth.
    From the solemnity of my father's death has sprung a blessing beyond measure - to have Kevin living thirty minutes away and to share chocolate fondue for my birthday.

Monday, August 29, 2011

Here's to Irene

     I was worried about my brother Kevin as the hurricane rolled in.  Not so much because I was concerned about his group home staff's ability to protect him from harm, but just because a natural disaster makes you want to stick close to family.  I knew he wouldn't be scared.  Having intellectual disabilities means he doesn't worry about things he doesn't understand.  Rain is rain, wind is wind. That's all there is to it.
     When we lost power on Sunday, I called his group home.  The staff are so used to me calling that they immediately handed the phone to Kevin before I had a chance to ask about the power.  Asking Kevin if he had electricity would mean nothing, so I picked something to which I knew he could relate.
      "Are you watching TV?"
     "Yes," he replied, but he sounded a little unsure.
      "Is your TV on?" I asked. "What are you watching?"
     "Movie, Sissa."  It was his patent response, but then I heard the drone of the TV over the phone.
     But the normalcy was short-lived.  I received a call from the group home manager this morning, saying that the power was out and they were mandated to move the residents to a hotel.  I worried about the transition for Kevin.
     Tonight, my fears were calmed.  Kevin was eating out, his favorite activity.  He had been in the hot tub and the pool of the hotel acting, according to the manager, like he was on vacation.  It is at a time like this that I marvel at my brother's ability to find joy in every situation.  And I could hear in the voice of the group home manager his joy at watching Kevin revel in his new surroundings.

Saturday, August 27, 2011

Aug 27, 1966 Redux

As my fiance pointed out last night, lots of things happen around my birthday.  Princess Diana died the day after my birthday in 1997.  My father died the day before my birthday in 2008.  He had major surgery ten years earlier and was in ICU on my birthday in 1998.  Michael Jackson was born the day before me in 1958.  And if you google Aug 30, you will see that St. Sixtus II began his reign as pope in the year 257.

But the event that I am most reminded of this year, as Irene comes to visit, is a storm that went through Rockville Centre, NY on Aug 27 1966, when I was eight years old.  We called it a twister, but I don't know if it was a tornado or a microburst or just a whole bunch of wind.  I remember the rain and our awning filled to the bursting point with so much water.

The real tragedy of that day was the power outage.  It went on for three days and we had to throw out the ice cream that was awaiting my birthday party.  I was inconsolable, as everyone knew an outdoor birthday party in the summer had to have ice cream.  Even though I saw the big oak tree that had blown down into the Dautels house and the trees laying across Windsor Avenue, just a block from our house, I was focused on my loss as my birthday arrived and the power was still out.

My mother tried her best to cheer me up and I recall some harsh words about gratitude and making the best of it.  In the end, I think the party was a success. And the power came back on at 5PM that evening, just as the last of the guests was leaving.  I felt my anger return and got my first life lesson in irony.

So as Irene approaches and I prepare the house with canned goods and candles, as I worry about the garage flooding and the tree limbs in the woods behind my house becoming projectiles, I remember the tragedy of the missing ice cream forty-five years ago.  I plan to consume all the ice cream in our freezer tonight for dinner, just to make up for it.

Friday, August 19, 2011


I recently joined a Facebook group called SibNet, which is for siblings of people with disabilities.  Just in the few weeks that I have been a member, I've seen more fear, pain and joy in the posts on this site than in any support group that I have ever belonged to.  The themes are all the same - guilt about not taking care of one's sibling, resentment at taking care of one's sibling, fear of the future after parents are gone, anger at responsibility laid at the feet of a sibling.  And, interspersed all too rarely, a story of a well-balanced family, happy results, peaceful resolutions.

It makes me want to spring into action, to take away the pain and fear for all these people who I know only by a paragraph or two.  I have felt the lifelong anxiety, the responsibility, the guilt.  Am I fully on the other side?  No, but there are long periods where I feel content with where I am and where my brother is.

I wonder how I can help.  I wonder if there is a way to connect siblings more directly than over social media.  I wonder if I have the courage to reach out.

So I long to connect more fully with my fellow sibs.  This blog was part of that notion a few weeks ago, but the chasm is much deeper than can be filled by a few hundred words.  I pray for guidance and a quiet heart to discern my path.  In the meantime, I keep on writing.

Tuesday, August 16, 2011

Where is Mama?

    Three years ago, I explained to Kevin that our father had died.  I did it badly, I think, but with the only words I knew to say.  Even though I showed him the casket, talked about heaven, said we wouldn't see Dad anymore, he didn't get it.  For weeks, he continued to ask when Dad was coming home.  And I would explain it again.  One day, after I asked him if he understood, he responded, "Me understand.  No more Dad, only Sissa."
     His comment was so succinct that I felt a little like Dad had died again.  I realized that Kevin accepts and focuses on what is around him.  When Mom died, he became closer to Dad. When Dad died, I was the next in line.  This brings me to the part that scares me - when I die, I'll be a distant memory too.  This is not the way my brain, my emotions work.  I continue to grieve my parents' death at times, especially when there's a happy occasion that I wish they could share.  Kevin has already adapted to his new group home, his new friends, his new life.
     The best advice I received about death and dying as they relate to Kevin was from people at L'Arche in Toronto, a community of the disabled and their housemates, started by Jean Vanier in France several decades ago.  I was counseled to bring Kevin through every part of the funeral, to be able to refer back to those moments, to help him to understand to whatever capacity that he could what was happening and to allow him to grieve in his own way. 
     Which brings me to today's conversation with him.  My fiance Vinny's mother died about six weeks ago.  Kevin has been with her several times in the last three years during holiday and birthday celebrations.  He knows that Vinny went to her house every week - what Kevin referred to as "Vinny's Mama's house."  But I have not been able to tell him about Anne's death.  Is it to preserve the illusion for him that she is still here?  Is it because I don't want to make him sad?  No, it is because I don't want to say the words that remind me so much of sitting in a funeral home in Florida three years ago next to Kevin, describing why Dad was in the box in the front of the room.  Today, I started to discuss that Anne had been sick and had been in the hospital.  Kevin asked, "Where is his Mama now?"  And I chickened out.  I changed the subject.
     So maybe next time I see Kevin, I'll tell him about Vinny's Mama.  I'll gather strength, say a prayer for guidance and trust that Kevin is as entitled to know the truth as any other adult. 

Sunday, August 14, 2011

Surprise Service

We stopped into an Episcopal church to view its stained glass windows while on vacation this weekend.  The building was over 150 years old with creaky ornate pews and a gold accented organ pipes to the left of the sanctuary.  After taking pictures of windows of Mary and Joseph and the altar and organ, Vinny sat in a pew towards the front of the church and I sat in the pew behind him.  He found an African-American hymnal in the book holder in the pew.  He perused the index of songs looking for familiar hymns and chose “Softly and Tenderly, Jesus is Calling,” which he sang with a voice that caressed the words.  After he showed me the page he was viewing, I pulled out my own hymnal and sang along.  Without a discussion about what we were doing, we began to alternately pick hymns to sing, including “All Creatures of Our God and King” and “You are Near,” spanning the decades of spiritual music.
After ten minutes I heard the door in the back of the church open.  Mixed with our singing was the sound of people moving around, then the squeak of the pew as they sat.  We sang for more than a half-hour, sometimes sweetly, then triumphantly.  Although I was tempted to turn and see who was listening to us, wondered if we were bothering them, concerned that we were interlopers into this community, I focused on the music and the words in these familiar songs.
While we were looking for another song to sing, the two people from back of the church moved forward and sat in the pew across the aisle from us.  It was an older couple and the man was crying.  “I just want you to know that you have brought me tremendous peace,” he said, wiping his eyes with the back of his hand.  “My aunt died this week and her funeral is taking place now in Seattle.  Since I couldn’t be there, I wanted to light a candle for her during the time of the funeral.   We were sitting back there and I was so comforted to hear your singing.  I wanted to thank you.”
Vinny shared the story of his mother’s recent death with the man and they cried together in their grief.  What started as a spontaneous visit to view stained glass windows became a way to express God’s love to another and receive His love back – a wonderful gift.

Wednesday, August 10, 2011

Being Sissa

I struggled with a title for my blog and came up with the clever name of "Pat O'Connor," a placeholder until inspiration sends its crafty fingers into my subconscious.

I recently completed a memoir entitled "Becoming Sissa," which is available for review by any and all agents,  My memoir describes the impact that my brother Kevin has had on my life, since I first realized that he was different.  Writing the book has brought me the awareness of a community of people - Sibs - who are the siblings of people with disabilities.  I am proud to count myself among their members.

So I have decided to entitle my blog "Being Sissa."  Sissa is what Kevin calls me, dating from when he could not make the "st" sound.   I cherish being called by that name.

Tuesday, August 9, 2011

The Joy of Good-bye

I have attempted to teach my brother Kevin to say good-bye for months now.  When I call him at his group home, often the staff giving directions, the show on TV, people coming and going are too much of a distraction for him.  Long silences from his end of the phone mean he is watching what's going on or he has put the phone down and walked away.  Sometimes he's so surreptitious about it that I spend a few minutes talking to the ottoman in his living room before I realize he's gone.

Now, when a silence occurs, I quickly ask, "Kevin, are you there?" to which he responds, "Me there, Sissa."  But he still puts the phone down without saying good-bye.  Why does it frustrate me so much?  I guess our phone calls bring so much joy to my day that I want them to last or at least I want to be prepared when they are going to end.

Tonight I called just before snack time.  Snack consists of a cookie or jello or pudding normally.  Tonight it was popcorn.  Kevin tried to sneak away, but I asked him to stay on the phone for a few minutes with me.  And he did.  I told him I loved him, to which he replied, "Tell me 'gain" as he always does.  After three repetitions, he said, "I love you Sissa" as he always does.  Then, I told him it was okay to go eat his snack.  I said, "Good bye Kevin" and he said, "Good bye Sissa."  It was all I needed to make the conversation, and my night, complete.

Wednesday, August 3, 2011

Blogging 101

Testing 1, 2, 3.  Yup, it seems to be working.  My first blog post.  I have joined the aughts.

With my upcoming trip to Italy, I wanted to establish a blog to be able to capture each day's highlights.

Mission accomplished.