I was in a treatment centre for alcoholism way back in the the early, early 1970s. That question was asked to me, “What is the most important thing in your life?” and I thought about it, and it turned out that I would have spent more time with my children... than cleaning my house and having everything looking… my self-esteem was caught up in how good a homemaker I could be: how clean the house was, how shiny the floors, how good the meals.
But when my first son died of leukemia when he was ten, I really wished I would have spent more time with him. He had been sick for five years. During the period when Lanny was sick, I could always fall back on alcohol, or drugs or sleeping pills. I wasn’t a falling down drunk, but I depended a lot on chemicals to feel better. I think missed out on a lot on interaction with that first son.
And recently my youngest son died, the one with Down Syndrome. And what a difference my approach to life was with him than with the first son who died.
The changes in society that I see today are people getting farther and farther away from each other, not closer.
When I was a child we lived down near the Parkdale Market in Ottawa, just this side of what they call “Mechanicsville”. My childhood was fun. People knocked on my door (this is what I find different from today), they'd knock and: “Is Barbara coming out to play?” Or I’d go down the street and knock on Claudette’s door: “Is Claudette coming out to play?” And there was no television; we made up our games. I remember walking on stilts - my dad made me a set of stilts and the whole neighbourhood ended up with stilts. We walked to school everyday. We didn’t bring lunches and stay all day. School from nine to a quarter to twelve, and then return for one o’clock. I remember when the war was over, the Second World War, there was a 24-hour all-night street dance in Ottawa here, near the Parkdale Market.
We went up to Calumet Island, Quebec, every weekend, to my Aunt, who was a postmistress. I just loved the old days: you brought your mail to the post office and we had the stamp so that, if it was out-going mail, we took the rubber stamp and put a black mark on the stamp and then put it in the out-going big mail bags. And in the winter, we crossed the Ottawa River with a horse and buggy, and brought the outgoing mail to the train at Campbell’s Bay, and picked up the ingoing mail, and brought it back to the post office, dumped it all in the middle of the floor and put it... they had little cubicles for all the townspeople. I loved it. And they had a big, round window with triangles in it, coloured glass, stained glass. You could look out and see the world in red, or in green or in yellow… I have never forgotten that. And they had a big house with stairs coming in off the kitchen going upstairs, past the five, six bedrooms and down to the back of the house, where the post office was. My dad was raised by [his extended] family ‘cause his mom died giving birth to the little sister, who died too. The father went off to the first world war, and my dad was raised by the Cahills. They were Irish, but they spoke French. I was never known as “Barbara”, I was [known] as “La fille de Donald St. Pierre.” I don’t think the townspeople ever ever knew it’s ‘Barbara St. Pierre’, is was always ‘Don’s daughter’, ‘cause they knew my dad from having been raised there in that little town.
And I think that is what’s missing today, that closeness of getting to know your family. I just found that the way the world goes now, we get so busy, well you know, with your job, your family, with your own children, with life events, you don’t see that much of your family, as we did then. I just find that missing.
My hopes for future generations? My hope would be that they would find their meaning earlier than they do now, but it can’t be. You go to grade 12 and there you have 45 choices. What are you going to do? Like, we had four choices. It was easy. I chose to be a nurse, but I got disbarred from nursing because I eloped one night, and, in 1957, you couldn’t be married and be in nursing.
“How did you meet him?”
I worked after school and on Saturdays at Woolworth’s, downtown in the record bar. People could listen to a 45 before they bought it. And he came into the record bar and he said, “Could you put this on for me?” And it was Fever by Little Willie John (Peggy Lee sings it too), but it’s, “You give me fever”... and he’s clicking his fingers (and don’t forget I’m very sheltered, I’ve never had a boyfriend), and he says, “You do that to me, baby.” I would have jumped off a building if he had said, “Now jump!” I just got pulled in like a magnet with pin on the floor. He met me at the back door of the store that night and he said, “I am going to marry you someday.” He said, “I’ll take you home.” I said, “Oh... no.” Cause we weren’t allowed. Went to school with the nuns, and boys were bad, and my dad didn’t want us going out at all…. We did get married, yeah.
And I don’t know what kind of mind I had, but when I met [him], first of all I didn’t know his last name, I just knew it was Jerry. His mother was Aboriginal Indian. And his father was from China, so he was mixed: part North American Indian and part Chinese. He had curly hair. So when someone said to me, “You know his family live in Chinatown?” I said, “Well, what do you mean?” He said, “Well, he’s Chinese.” “Well, no he’s not.” He just looked, to me, okay. And this is the thing, special needs people look okay to me, so I wonder, ‘do I have special filters in my eyes, that I’m not seeing things right?’ But it doesn’t matter. ‘Cause I’m happy with what I see. So then I went to his place and met his family, and, sure enough, Mr. Fong was Chinese. It was only after Alex was born that we changed our name. The nurses would come in and say, “Mrs. Fong...Oh she’s not in here, she’s been moved.” They expected a Chinese lady. And after three sons, he said, “What do you think if we changed our name?” ‘Cause there’s still a stigma attached. And because they are boys, and they will be the breadwinners: they’ll send in applications and sign it ‘Fong’ and he may not get the interview, whereas ‘Deane’ would.
I guess stopping the drugs and alcohol would be the most important thing in my life, ‘cause if I hadn’t, I wouldn’t be here. I guess… you accidentally trip into it. That first drink made you feel so normal, when you felt like you didn’t fit. I would say the alcoholic drinking started after Lanny died. If I could say, that’s when I stepped over the line. I drank to not feel those awful feelings.
By now I had blackouts and I couldn’t remember. Once I went to Montreal at 4 o’clock on a Monday afternoon, didn’t come home ‘till Sunday. Well of course the marriage didn’t survive. My supervisor at the Civic Hospital came over for a barbeque. And apparently I’d had a lot to drink before and went to bed and left her and her husband to make the barbeque. She phoned me the next day and said, “I will never come to your place again until you do something about your problem.” I said, “What problem?” She said, “You have a drinking problem.” She said, “You do not invite people, families,” she said, “I was there with my children and husband, and you were passed out in bed.” She was really, really something else… a mentor. She was the first one who said that. So that was a little bit on my mind.
I was leaving the hospital and one of the neurologists said: “I’ll take you out to lunch” and he said, “Would you like a drink?” And that was my moment of awakening, because I thought ‘No, ‘cause if I have that drink, I may not go home tonight.’ I said, “No, thank you.”
And so for 19 days I didn’t have a drink, or a pill, or anything…. and I just wanted to die. And I thought, ‘If this is what sobriety if all about, I don’t like it. And if I go back to drinking, I’m going to die. I don’t know what to do.’
“Why were you so low at that moment?”
I think just the fact of not being in control of that particular problem. You can wrestle with it your whole life. Say, “Okay, I’m only going to have one drink today” and waking up the next day, having ruined another dinner. My husband rented a camera and took a picture of me making dinner and sipping on wine: how idiotic I looked, the expression - I thought ‘No wonder people know when you’re drunk!’
I picked up the phone and called someone from an AA group and I said, “I would just like to end it all, I can’t live like this.” She said, “Do you mind if I send someone to your house tonight?” And I said, “No.” So this man came to my house and he said, “Barb, if you go to this treatment centre, you will be seating at a whole banquet table of every imaginable alcohol, every pill you would ever want to ease your situation, your anxiety, your fears,” and he said, “And you won’t even want it.” Well what a difference that was between told, ‘You won’t want it’ and being told, ‘You can’t have it.’ What a difference. That one sentence that he said, “You won’t want it”, reverberated in my head. Like, there’ll be some control of a situation that’s got so out of control.
I called Hazelden down in the States, in Minnesota. There were not many avenues open to Canadians way back in the early ‘70s. And they said come down. So I went down and have never looked back. This is where they said, “If you had you son back today, what would you do?” I said, “I would just spend more time with him and tell him how much I loved him.” When I think of all the days and when I was cloudy and out of it, and in some sort of foggy state of mind, you can’t really be present for your children then. It’s sort of an emotional abandonment.
I’ve been in AA for 41 years now. I love AA because [of] it’s unconditional acceptance of who you are. AA is a small organization, but if the first people who started the movement of AA didn’t stay, it would have died. So people like myself, who are called ‘oldtimers’, if we aren’t there to help the new ones coming in... And that’s like a family. I’ve had one heck of a life with addicts and the alcoholics: they are lovely, lovely people! They are nice people, and dependable… when they stop the addiction.
My third child was special needs. I had Lanny, then I had Tom, and then Alex and when Alex was born with down syndrome, I had no idea what it was. My husband was Chinese and we thought he looked oriental. When he was about five months old, he had barely cried, he was really, really contented. That bothered me because I had two older sons who were so different: they cried when they wanted to be fed and that. I had to set timers to feed this baby on time because he never cried to say I’m hungry or I’m wet or …. So I went to the doctor and they did a special test and he called us and said, “Yes, he definitely has Down Syndrome.”
I went to the doctors and I said, “I need antidepressants. I’m really depressed.” And he said, “How long do you think the depression is going to last?” I said, “Well I don’t know.” He said, “Well, he is going to go to the age of 50. You gonna take pills for 50 years?” He was a good old, family doctor. I said, “No.” He said, “Look, don’t even bother with the pills.” He said, “Get a job. Take your son to a daycare where there are other children, so he can learn from the children.” So I went home and... I didn’t see being a working mother in my life. I love being at home: I loved gardening, I like cooking, I loved taking the kids out for walks, but I went and looked in the newspaper and it said ‘EEG technician trainee’ and I thought, ‘What the heck is that?’ I had no idea. I asked a nurse down the street, she said, “I think you poke pins in people’s heads.” But it was Monday to Friday, 9-5, Ottawa Civic Hospital, walking distance...if I could get a babysitter close to the hospital and sure enough there was a lady who had a little daycare in her basement. And I called her, she met Alex, she said, “Yes, I’d love to have him.” ‘Cause he was so easy going. He was an easy, easy child, loving. And that was December, 1965 and then in April, that’s when Lanny was diagnosed with the leukemia. But you look at the good side of that: I was there at the hospital. There was no CHEO yet; children went into the Civic hospital. So every time he went in to the hospital in a relapse, I was there. I was there the day he died, with him. He had looked out the window, it was December, he said, “Oh, mom, look at the sun!” It was pouring rain. Dark, dark cloudy day, but wherever he was now, in his journey, it was sunny, it was bright.
I looked around years and years ago when Alex was born, I couldn’t find anything that was great, so we had decided to, more or less, open up our own group home for special needs people. So we adopted a little boy, and fostered another one, we had Alex, and we had a little girl move in from Belleville. And then everything fell apart. My husband had a breakdown and left, so that plan had to be put on hold. Then I remarried, and again I thought…
It’s hard to describe... I just felt, I wouldn’t say a calling or driven … I just felt so comfortable with special needs people that to live with them wasn’t just to take care of them, it was to have a life with them.
So after I remarried, the second husband, who came from the AA program, (unfortunately, quite a bit older than me and he died a few years ago) [and I] looked around and we met this young man called Brent and he knew right on contact, immediately, there was a bonding. This is the person to bring into our home. And he had been there 25 years, he came in 1990, and wow, that 25 years was, it was heavenly. My son, Alex, married a young woman with down syndrome. CBC had carried the wedding because it was groundbreaking for Down Syndrome people to get married. They said they were pioneers in the field. But [she] was given up at birth, so she had been to various foster homes throughout her life. But then after six years, [she] said, “Well I really love your son, but it’s time for me to move on.” ‘Cause this was the norm for her; this foster home, that foster home, getting rooted somewhere was not her norm, so she left us. Still Brent was with us. Their friends came over, and they really had a good life.
A lot of people think I’m kind of nuts. Like why would I want to... (And this is what they don’t understand.) Why would I want to burden myself with special needs people? ‘Cause it’s not a burden. Life took me in this direction; it’s so natural for me. I didn’t get my big huge group home, but I got a mini one.
When the government job came up 25 years ago, the Down Syndrome Association invited Alex to try out this new program. They had gone to the government and they got permission to hire special needs adults to work in regular jobs, to go off disability pensions. So the Ontario Government paid teachers, like, somebody who would go to work with Alex for a year, teach him that job well, and teach the government employees how to interact with special needs people. They hired six Downs at CRTC, Canadian Radio and Television Communications, 25 years ago and it was quite successful, and these 6 people went off ODSP, Ontario Disability, and earned their own salaries.
I went back to university, got a degree in English literature, halfway through a Masters in it. Worked full time while I did it, took care of the guys... Yeah, I just had so much energy. It was the only life I knew and the only life I wanted. I never felt burdened. Some people don’t understand that, but I just didn’t feel burdened by them, it was energizing. I felt like I was making a difference in somebody’s life.
“You were!”
You’re right, I was! It never dawned on me that it would ever be over. I started to worry about, “What are Brent and Alex going to do when I’m gone, if I go first?” And that worried me.
I did a lot of research into what would be available to them. Brent would get into a placement very quickly, but Alex wouldn’t because he wouldn’t qualify, he wasn’t on a disability pension, so he would have to find his own way after. A friend of mine from the AA program would say, “Just don’t worry about it, it’s gonna get taken care of, watch and see.” Well, it did get taken care of, with a big brain tumour. I just didn’t like the way it got taken care of, but it did.
I may be reading way too much into this, but it gives me comfort, so I prefer it. The day that Alex died, just at that moment, the sunbeam came around the corner of my building and went right on Alex’s face. This was minutes after he died and I thought right back of Lanny saying, “Mom look at the sun”. And when I saw that sun beam on Alex’s face, it only lasted about ten minutes and then it went up into the clouds, I thought yeah, there’s another gift. It’s really strange, isn’t it.
So he left us. We were lucky. What I say to myself: What other mother has the gift of being with their child from conception to the last breath? I mean that’s a gift from the universe. I just can’t be more grateful than having that. And just weeks after Alex’s funeral, Brent went into kidney failure. And he’s been in the hospital for 12 weeks now. He won’t be coming home to me, because he is in a waiting wing, where he’s with a lot of people, elderly, with Alzheimer's. They are also waiting for placement in total care homes. But yesterday I got word where Brent will be going and I’ll be able to see him as much as I want and help him with that transition - that’s a gift too. So there were the answers to what nearly drove me out of my mind two years ago, wondering what’s going to happen to …? Oh. So this is what it is. The big fear, the big, monumental fear I had of what’s going to happen to them, if I can’t take care of them anymore… well, I’m being taught the lesson. ‘You’re going to help Brent with this transition. You know he’ll be okay because you’re going to help him make it.’ Then I’m going to have to make a transition...
I think the most valuable advice or wisdom to give somebody younger would be to just be who you are inside of yourself. Not all the trappings: you are not where you live, you are not what car you drive. Just, what kind of a person are you inside?
I’m in a big transition period. I have never lived alone in my life. Seventy-eight years and I have never lived alone. And I find it strange. I’m going to my AA meetings, I’m going to the hospital everyday to visit Brent. I’ll probably volunteer somewhere. I may go back to school: I have a fascination with world religions. It’s to get the balance: the exercise with the golfing, the bridge is really a lot of fun, and some volunteer work, and some studies.
I would change nothing other than spend more time with the first child when he was sick. I had the chance to rectify that in life with Alex. And now with Brent. And that’s the beautiful difference...With Alex dying, it never occurred to me once to want to run away from what was happening. I just wanted to enjoy being with him while he was here. [He] was only sick six months and we had interaction every day, 24 hours a day. I had a bed right in his room. The difference between how we handle life with narcotics and alcohol, as opposed to handling the same situation with the 12 step program behind you, and all your friends in recovery. Night and day.
