February 14th, 2012
I have so much to tell you, and I am feeling very neglectful of my blogging on this website. What happened was too much fun with the Huffington Post (you can look me up by clicking at the top of this site) since July.
However, some subjects, such as ours (siblings and how to survive being one) deserves a quiet chat amongst ourselves.
Here is a huge breakthrough for me, and in case you go around feeling guilty because you aren’t there at all times for your sib with the special needs, I have to tell you!
So my sister Irene (next blog about her new life not weighing 250 pounds)participated in Special Olympics Bowling last month. Naturally, I assumed I was expected to go cheer for her. Her staff was going to be there anyway, but I just knew she was counting on me. Should I bring her a bouquet of flowers? I decided against that, but maybe balloons? Well, that might be a little distracting.
So I went just by myself, no gifts in my arms, which is usually what I like to do (Guilt-Because-We’re-Normal R US).
I found Irene’s team and lane, and watched her send her slow motion ball down the lane and make a strike. I cheered and clapped, and then she saw me. She ran to me and hugged me and immediately took me over to the souvenir table, where you could buy all this stuff with the Special Olympics logo on it. She started showing me all she wanted me to buy for her. But then someone from her team yelled at her and it was her turn again, and she was way back near the snack bar with me.
What happened next was that Irene never made a strike again as long as I was there. In fact, she kept throwing gutter balls. Her team was groaning.
What happened was that her attention became focused on me and the chance to get more STUFF.
What happened was that although her team was in position to get bronze medals, her lack of attention lost it for them and instead they got white ribbons, fourth place, for participating.
Her team was staring daggers at her, and that night, her staff leader, Gretchen called me and gave me the bad/good news.
“You may have noticed that you are not always a good thing in Irene’s life, fabulous as you have been.”
“Well, yes, I think I inadvertently made a mess of her whole experience.”
“That is correct,” said Gretchen. “What if next time I call you just before they get their awards and you can come clap for her then? So that she can concentrate on her game and do her team proud?”
Inside, I was kicking myself, and also cheering. My sister not only didn’t need me, she didn’t WANT me!!
Perhaps ours is the only field in life in which you can feel both foolish and free at the same time. My spirit is taking wing. Irene is growing up and having her own life.
I don’t always need to be right there.
I am 72 years old and it took me this long to figure out.
So that is Mother’s Little Lesson and story for you for today. Let me hear from you.
And Be My Valentine, will ya???
September 25th, 2011
If you have someone with developmental disabilities in your family, you probably share a secret and a bond with the rest of us who do. Lots of friends look at you with great sympathy, as if this is a cross they never could bear. But here’s the secret: much as we have strife and burdens we never counted on, a lot of fun happens because of our family member’s special needs.
Take the case of my lifelong friend Lyn, whose son Walter has Down Syndrome. Walt could read and write and do all sorts of tasks no one thought he’d be able to do and, beginning in junior high school, went to a regular school taking some special education classes and some general classes with students who were not handicapped.
One day Walt brought a note home: “If Walter can learn how to open his padlock, he can take a regular gym class. ” Walt then handed Lyn the padlock and looked at her. She read the instructions, and then said, “Now look, Walt. This isn’t hard. You just turn it this way first, see, and then when you hit this number, you turn it ….wait a sec, I went too far…..um, so let’s start over…..” And Walt grabbed the padlock from her and promptly did the combination and opened his padlock. Twice. “That’s it, Lady!” he said.
These are the scenes I mean. Where else do you get this kind of surprise and joy and laughs? We have a collection of them.
When he was about seven, Walt needed a new parka. His speech is a little labored, so Lyn had to ask a few times before she got what he meant. “Okay!” she said. “I’ll look tomorrow!”
When she came home from shopping, she took the parka out of the Kmart shopping bag and said, “Ta Da!”
Walter frowned his deepest frown.
“What’s the matter?” asked Lyn.
“Don’t want hood. DON’T WANT HOOD!”
“Walt, listen, they only come with hoods. They don’t have any without hoods. Now just settle down and let me unload the groceries.”
Walter’s expression indicated that he thought his mother was mentally impaired. “Baby coat,” he said, scowling horribly.
When Lyn came back in from her car, her kitchen was snowing feathers. Walt had found some scissors and was methodically cutting off the offensive hood to his new parka.
She called me. I couldn’t tell whether she was laughing or crying , “I wonder if this is why they call it Down Syndrome……”
We were having dinner at Lyn’s house, drinking wine and laughing and chatting, and Walter came into the living room and handed me a note. The note said, “Pls. BE QUITE.” He knew what he wanted, and he told the world.
Another evening Walter’s family came to my house for dinner and I was showing Lyn my fancy new dressing gown with sequins and feathers. Walter made it clear that he wanted to try it on. Much taken with his reflection wearing the elegant garment, he said, “Opera coat” posing as if he were about to be photographed. This was an early sign of his adolescent preoccupation with adult finery and his appearance in general.
Every Sunday as the family got ready for church, Walt’s brothers and sisters knew they must be in their Sunday best, clean hands, hair brushed. Walt did all these things too, but something was missing. His father always wore an elegant necktie to church. Walter appeared with his bathrobe belt, which he had carefully tied just like a tie around his neck.
When Walt’s parents told him this wasn’t going to do, he simply insisted and resisted. Insisting and resisting is something every special needs family knows all too well, and it’s a hard one to work around. In short order, Walter had several neckties of his own. However, he seemed to think that the bathrobe tie was more reverent attire.
Lyn was clear that Walt needed to look every bit as nice and better than other kids at church. Just because. It took about four Sundays of Walt getting out his bathrobe belt and heated discussions with both parents to get Walt into one of his new silk ties.
When Walt was an older teenager, he got to wear one of them to a performance in Las Vegas by Bill Cosby. Somehow the family got stage-side seats and Cosby’s superb performance, as usual, riveted the crowd and brought a standing ovation.
Just before he left the stage, Cosby took a flower from his tuxedo lapel and knelt down by Walt, who was sitting right next to the stage. He handed Walt the red rose and said, “Give this to your mother.”
As I say, there are those who get it, and those who maybe don’t.
September 2nd, 2011
I’ve heard from Buddhist friends that everyone comes into our lives to teach us a lesson, and to help us rise above our self-defeating patterns, which we play over and over again. One of my most outstanding self-defeating patterns is the urge to fix everything for everybody. Since my sister was born with her brain damaged, I have felt a need to make everything okay again. After checking in with a lot of siblings (see Don Meyer’s wonderful national project: Sibs), we’ve learned that most of us feel this way. And so we find ourselves racing around waiting on people, solving their problems, giving us some slight relief from our guilt of being normal. And then new problems crop up the next morning.
Last winter my sister Irene, who cannot read or write, but who can certainly walk and run, and who talks a mile a minute, simply crumbled to the floor in her home near me. Her muscles gave out. She couldn’t walk, couldn’t hold her head up, and the doctors hospitalized her. As I would sit with her in her room, or push her in her wheelchair down the hall for tests, she kept asking over and over, “You like my jacket?” It was one she got for Christmas, white fleece with violets and sequins to herald the sparkle of winter and the coming of spring. “I love your jacket,” I answered over and over. Finally, I was thrilled to see Irene get better when they took her off the offending medications. Her head popped back up, she could walk, and her happy self emerged again.
But I was exhausted. I was headed to a writer’s conference in Florida. I told my husband, “I am going to get a massage while I’m there, and I am going to put flowers in my room. and I am not going to push anyone in a wheelchair the whole week.”
I did have my massage, and I walked the beach, and I thanked the Universe for getting Irene out of a wheelchair and freeing me from that burden. I didn’t realize the Universe was laughing its head off, waiting for my Little Surprise Lesson.
The night before the conference began, I met a woman who was attending it as well and we made plans to meet and go together.
The next morning, when I went to her room, her door was slightly ajar. She was writhing on her bed. “I have thrown my back out,” she wailed. She was in terrific pain. “Could you possibly just find a wheelchair, somewhere in the hotel? And wheel me to the car? What is the matter? What are you staring at?”
She was struggling into Irene’s fleece jacket with the violets and sparkles on it. “Oh. Nothing,” I replied, “it’s just that you have the very same jacket my sister has. Very pretty.”
Half an hour later, there I was, wheeling the lady in the fleece jacket. How spooky is that?
She had called a clinic. Would I please take her there? It meant missing my first session, but I of course agreed. She got a prescription for painkillers, which we had to fill at a drug store. Then we had to find her a sandwich to take with her pills. All the while our session is taking place without us. In the afternoon, I wheeled her in and we met everyone. At the break, she insisted I be the one to wheel her around, no one else, thanks. “Oh, Terrell will do it,” she told them all.
When we finished that afternoon, a young woman in our group came over to me and said, “Walk with me a minute.” We did. “Listen, Terrell,” she said, “When you wheeled her in here, we thought you were her nurse and personal assistant. We had no idea you had just met. Listen. I am a doctor. I see patients like that woman all day. When they are sick, frightened, or in pain, they want every moment of your time and they want to be waited on, and they will never leave you alone. This woman will heal twice as fast if you don’t feed into this dance she’s doing. Stay away! Have dinner with us in town. She will want you to miss what she’s missing and she will want you to keep her company. Just for what it’s worth, listen to me. Save yourself. Enjoy this workshop. She will find strength because she has to.”
Over the next day, this woman sat in her dark hotel room waiting for me to come fix things for her. She hadn’t ordered food or turned on her television, claiming she didn’t know how. The pain pills were making her so sick, and could I just come stay with her and keep her company?
Staying cheerful, I handed her the room service menu, showed her the TV. control, and the bell captain’s number. I said I couldn’t miss one more day of the conference I’d paid for, and surely she would understand. She cried, sounding uncannily like my sister when she’s manipulating me. I suggested she call room service, turn on her television, and call her local doctor or husband and decide what to do next. Then I went to bed.
By the next morning, she had packed, arranged for transportation to the airport, and was on her way back home to her doctor and husband.
I thanked the young doctor at our workshop, who said, “Thank God you caught on. You don’t need to help people stay helpless and ruin your own day.”
With my razor sharp mind, I am finally noticing that people, including my own sister, want to be empowered, not dependent on me for help.
So if you fall down and I step over you and say, “Gosh, good luck, honey,” you will, I hope, understand. Especially if you’re wearing a white fleece jacket with violets on it.
August 3rd, 2011
I want to be just like my sister Irene.
She may not be able to read or write, but she takes such pleasure in the littlest of things: a cheese and cracker packet in the gas station store, a new pair of shoes, sparkly nail polish. And if the nail polish is on her toes, she’ll sit right down and take off her shoe and sock so you can see it.
If she sees a friend in the supermarket, she squeals with delight and runs to put her arms around her.
If she sees a friend’s photo in the newspaper, she cuts it out and shows it to people all day, wherever she is.
When she stands in line for movie tickets, she makes sure to make new friends by offering her hand and introducing herself. Then, to entertain her new friends, she opens her purse and shows them everything in it that she treasures, including the key chains.
Irene has done this all her life. She did it when she weighed 216 pounds, and now that she weighs 164, she still does it.
Yes, in the last six months, since Christmas, Irene has dropped 52 pounds. At Christmas, she had a muscle meltdown. She could not walk or hold up her head. She was hospitalized. (This was a huge treat: people brought food on trays and waited on her every moment. She got to lie there and watch TV while the doctors patiently took her off one anti-psychotic medication and then another.) They pinpointed the problem as her medications turning on her. When, after four days, she was off most of them, her head slowly came back up. Within two weeks she was off every medication except one diabetes pill per day and melatonin at night for sleep.
Every month, the weight just melted off her. Of course she worked on it, too, by eating mostly salads. Her staff talked about how much better her knees would feel without so much weight, and she was clear-headed enough to believe them. She walked the malls or swam at the community pool when the weather was bad. And the weight kept coming off.
We were concerned that her behavior (always controlled by her former pills) would now escalate into more tantrums, but no. She acted much more like the happy, animated sister I used to know. Sometimes she got so excited I thought she was turning manic, but gradually she began acting much more normal than ever before, and she has been this way for the past two months.
When I grow up, I hope to have the happy attitude she always exudes in the world. I hope I can exude it right now, even though I feel sloppy, hot, ten pounds too heavy, and kind of ugly, really. Irene has never thought about her looks. She thinks about her friends. And good cheese and crackers. And sparkly nail polish. And how wonderful life is, no matter what body you are walking around in.
Ram Dass said, “Loss, gain, pleasure, pain, they’re all the same.” They are temporary states in life. And we are winners if we can just keep shining through them all.
Irene does, and that’s what I’m going to be like, too, when I grow up.
May 1st, 2011
I have never met author Rachel Simon.
But we are best buddies, thanks to emails and phone calls and editors and agents. She was gracious enough to endorse my memoir about my sister Irene, and she is the author of Riding the Bus With My Sister, which is a wonderful memoir.
She has taught writing for many years, and she writes fiction as well as she writes non-fiction, which, by the way, is no small task, at least for me. She has coached me through horrid days of writer’s block, and I cannot thank her enough for her generosity and friendship.
She has written one of the great works for the field of disabilities now. It is The Story of Beautiful Girl. She let me read it, last year, in manuscript form, before she made a sale, and I was just a puddle of tears and joy when I finished it. You can order it now from your local bookstore or on Amazon, and you will be so glad you did. I predict it will hit the best seller list within weeks. I am in total awe and admiration of this work, and I think you will be too. It isn’t, of course, just for those who have people with disabilities in their lives. It’s for everyone of every age.
Get The Story of Beautiful Girl. It will make your spring.
April 28th, 2011
At least it’s not raining today. Salt Lake City has been inundated this spring with snowstorms and rainstorms and unmitigated grey. It was all the tulips and daffodils could do to muster their courage to push up through it all. Gardeners are standing in mud, holding their flats of pansies and hardy perennials and shaking their heads. You cannot work the soil because it’s just saturated with water to the top.
And it’s cold. Our mountains surrounding the valley threaten to unload their double helping of winter snow in torrents as the weather warms. And it warms up suddenly, too. Always has. Neighbors help neighbors sandbag the banks of the creeks, hoping new creek won’t spring up everywhere, hoping not to be rowing to work for days as we were in 1983.
Besides all that, our Congress cannot get itself together, we are overcommitted abroad, and my spirits are lower than a snake in a wagon track, as the ranchers say.
I have had surgery on my colon very recently. Thank heavens it was not cancer, just diverticulitis that would have worsened had we not cut a portion out. So my outlook is not the cheeriest as I have been half bedridden, gazing out on the grey and soggy spring.
Our children have all abandoned ship for Easter and gone camping in southern Utah, taking my granddaughters, all teenagers now, with them. I have not put out one Easter egg or bunny on my dining table or in my living room. I have dozens of eggs we have blown and decorated over two generations, and five stuffed bunnies at least, waiting to greet the spring in baskets as I always have done. But, since no one is around to come to dinner or enjoy my decorations, I have left them in the basement and stayed napping most days, trying to heal up.
The children have reported in that they were rained out of their campsite and staying in a motel. I consider it divine justice for abandoning me in my Easter funk.
So the entire family gazes out into the gloom and wonders where Spring and Hope live anymore.
Except for one family member.
My sister Irene has greeted the season by putting up every bunny and Easter decoration she has. Her home is dripping Easter, including the bunny flag outside her door to greet passersby. She invited me to “come over and see all my Easter stuff” yesterday, so I went. It cheered me enormously. She also is fairly clear that the Easter Bunny does indeed exist, and for that reason, this morning she awoke to a kitchen table with a big basket of goodies for her, and the eggs that she dyed Friday were all hidden around her living room, along with plastic eggs with dollar bills in them. (Thank God for a great staff.) She has no idea that the country is in trouble.
She laughs at all the puddles in our valley. She transcends all the wishes and fears of our more developed minds, and lives in the fun of NOW and the celebration of life just as it is. P.S. She has lost 40 pounds (“I’m walking and swimming and eating lots of salads!”) and gets a whole new wardrobe. (“I used to be a fat lady, huh!” she says as her old skirts fall down around her ankles.) I could pull a few pages from her book. I don’t even want to get on the scale.
We are heading out to dinner with her at the Country Club, where she will be able to thank the Easter Bunny, along with toddlers and little kids, for visiting her this morning.
I hope the little kids understand why a big lady is meeting him and talking to him so happily. I know the Easter Bunny will. He always does.
Maybe when I grow up, I can be more like my sister.
February 23rd, 2011
The night before Christmas, Irene’s muscles simply stopped working.
She collapsed on the floor and began hallucinating. Her staff was terrified. It is really hard to get two hundred pounds of dead weight off the floor. Her lead companion, Gretchen, had to call a friend to come help. We got her to the Emergency Room, where they tested everything they could test, and could not find the cause of her problem. The E.R. doc, seeing that she was someone with developmental disabilities, just shrugged and chalked it up to the mysteries of brain damage, refused to hospitalize her (because nothing was really wrong with her other than brain damage, in his mind), and sent us home. We took Irene to my house, where Paul and I got her in bed.
(Irene on far right, just before her head could not lift from her chest. She could not stand up at this photo time. She was trying to be a good sport.)
I sat with her, trying to cheer her up, reassuring her that Santa Claus was coming to our house as well as her house, and he might even know exactly where she was. I hung a stocking on our mantel especially for her. She pointed to a spot behind me, and said, “You’re sitting on the bunnies.”
“Yes. Those bunnies.”
My heart was pounding. Her hallucinations were at least gentle ones, not monsters or scary ghosts.
On Christmas morning, we wheeled her to the living room on Paul’s office chair. Santa had left her a Polaroid camera, which she had wanted more than anything. She just stared at it, her chin, drooping to her chest. She could barely reach into her stocking to see her treasures, and really didn’t care.
Somehow we got through the day, and took her to her house to see what Santa had left there. She still didn’t much care about the new doll and filled stocking. I stayed with her all night, and she kept telling me there were mice all over the floor.
When Gretchen came on duty the next morning, I said, “Well, now we don’t have bunnies. We have mice. Apparently they’re all over the floor.” I was rolling my eyes, thinking about the mind’s power to see invisible things.
We couldn’t stand it. Irene was a mess. Gretchen and I took her back into that Emergency Room and asked for another doctor. This time the fellow on duty looked at her as a fellow human being, one who had something drastically wrong with her, and said, “She is staying here with us until I get to the bottom of this. We will find out what’s wrong with her.” He sent her to a wonderful, sunny private room and kept her there for three days.
He found the problem. She was on so many drugs for so many things, they had built up in her system and caused this muscle breakdown. Lipitor was a culprit; when they took her off that, she got halfway better. Then they cut the Abilify, and she straightened up and became her cheerful self. She was, however, very sad to leave her hospital bed, where so many lovely people brought her food and found her favorite shows on t.v. all day.
The final part of the story is that after Irene got settled at home, happy with her Christmas gifts a week later, Gretchen called to report in. “I’ve called the pest control people,” she told me. “They’ll be up in the morning.”
“Oh? What for?” I asked.
“The ones Irene was seeing last week.”
I started to laugh. “Gretchen, they were the same as the bunnies as my house.”
“You had bunnies at your house?”
“Gretchen. Honey. No. They were all part of Irene’s hallucinating.”
Another pause. “I guess I’ll call back and cancel pest control.”
“Thanks. That’s a good plan.”
All I can say is, I am grateful that both Gretchen and I have the odd glass of wine or three now and then. It’s the only thing that got us through.
And I am grateful, for good E.R. docs who aren’t afraid of special needs folks, for the fact that my sister is not wheelchair bound, as many of our siblings or children are, and for the blessing of a good laugh in the midst of pain and uncertainty. It put me in touch, once again, with what so many caretakers live with every day. I count my blessings.
So Merry Christmas, Be My Valentine, and now onward to St. Pat’s day. It has taken me this long to be able to relax and reflect on it all.
December 12th, 2010
So for Thanksgiving, our family hosted three international visitors, from the countries of Morocco, Yemen, and Mauritania. They all spoke Arabic and needed a translator, a Syrian who turned out to be a native speaker in both languages. His simultaneous translation, carried on in a low but clear voice, sped the conversation along. Irene was fascinated that two people could talk at once like that. (She later told a companion, “They were speaking Chinese! All the time!”)
When the turkey was carved, and we all sat down to eat, it was time to give thanks. Irene always wants to be first to pray, as she will have the full attention of the group.
She began, “Dear Heavenly Father,” and immediately the translator began as well, in Arabic. I think Irene was slightly horrified. Here was a man giving his own prayer! And it wasn’t his turn! Oh, maybe it was, and she should stop! So here’s how her prayer came out: “Dear Heavenly Father…….Hope we have a…..nice time…..In the name of… Jesus Christ! Amen!”
The Muslims didn’t get why we our eyes were closed and we were all laughing. I think the translator got it, but we all hurried on to give other prayers of thanks, and asking our mutual God to bless the whole world. My daughter Marriott said it was the best Thanksgiving ever. I agree. I think maybe the hope of the world is laughing together, in many languages, over a family dinner.
November 20th, 2010
Irene has been admitted into a new program at the University of Utah Medical Center for her general medical care. They treat children and adults with developmental disabilities, and their specialties include not only general medicine but psychiatric medicine, which we all know is a huge consideration in this population.
At our intake interview, this was the sign on the wall of the room:
It was inspiring. We think we’re in good hands.
November 14th, 2010
The Mormons have a saying: A secure family is a nation’s strength.
Our family suffered a loss and a horrific scare within the course of 48 hours two weeks ago and we’re still absorbing it all. What came clear most of all, for me, was the blessing of having a family that works together in crisis.
The loss was that of our beloved German Shepherd Dog Max, who turned 8 years old this summer. He began panting one morning, refused to bring in the paper (his favorite job), and then stretched out in the hall and simply stopped breathing. His eyes were still open, which somehow makes it more horrifying. My husband Paul stood there sobbing, and I knew that soon Max’s body would start evacuating through his bowels and we had to get him to the vet for cremation. I called our son-in-law Craig who lives five minutes from us and works from home. He was over in five minutes and together he and Paul were able to lift him to the back of Paul’s car and put a towel under him first. (He did indeed evacuate on the way to the vet’s.)
I had a speaking engagement that began a half hour from that moment, so I had to put off the mourning for Max and simply operate to get things done. I could not very well say I wasn’t coming because my dog just died. I have been reared to keep commitments. I must say my speech was disjointed and certainly not my best, but I left knowing I had performed.
We siblings tend to know our job is to perform, have you found that? Let others have the tears and the drama. You just get the job done and cry later, on your own time.
The next day I was a mess and sobbing, while Paul went around putting away Max’s bed and food dish and leashes and collars. But I noticed we functioned as a family, doing what needed to be done.
That night we got a phone call from our daughter Kate. “Marriott and Isabel (Kate’s sister and teenage daughter) have been in an automobile accident. They appear to be fine. Thank God for airbags. But they’re going to the hospital in neck braces, just to be sure. I’m going to the scene of the accident to pick up Wallace (their little dog). Yes, an elderly gentleman ran a red light and plowed straight into the driver’s side. The car is totaled. Do not panic, Mom: there’s not a scratch on either of ‘em.”
When we all gathered at the hospital, the real scare began. Although Marriott looked fine on the outside, the whiplash had torn a carotid artery and she was in danger of a stroke. She was so scared herself she had a talk with her children and Craig about what to do if she died.
Long story short, five days in the Shock and Trauma unit.
We each dealt with this in our own ways, some sobbing, some taking charge, all of us spelling each other off in the hospital (except for Craig, who insisted on sleeping on two chairs next to Mare’s bed for three nights, not letting any of us spell him off). When it came time to go home, Mare had to have shots in her stomach to continue her blood-thinning regime. She could not bear to give herself a shot. Craig could not either.
Once again, sister Kate took charge. “Listen, I remember all the times I was on a diet when we were teenagers, and Marriott would come stand in front of me with a Twinkie and eat it and say, ‘YUM!’ I’LL give her the shots! Give me that needle!”
Everyone taking care of everyone. That’s how it went, and, with luck, that’s how it will go. My parents showed me how you did this, with rearing Irene and me, and somehow the example is carried forward. Someone cries, someone calls for help, someone makes soup, someone drives a child to school, someone does the vacuuming, someone feeds the dog. Then the person who cried gets up and makes a casserole and sends thank you notes to all the friends and neighbors who brought food and love and flowers.
Mare just came back from having a stent put in her artery, to shore it up and keep her safe. We were again blessed with the best cardio surgeon in these parts, and maybe the world, who gave her all the confidence and optimism she needed.
We are whole again. We have looked at a litter of fine German Shepherd pups, and on December 20th we should have a new family member again. Max’s bed and leash and collars await.
Marriott Kate Marriott, Anna & Isabel