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.