Tuesday, December 21, 2010


"When I really worry about something, I don't just fool around.I even have to go to the bathroom when I worry about something. Only I don't go. I'm too worried to go. I don't want to interrupt my worrying to go. ~Holden Caulfield, Chapter 6, The Catcher in the Rye.

When my nineteen-year-old son comes into the house, he brings the unwanted stink of cigarette smoke. I say to him,  "Max, you smell awful." His eyes open wide in surprise. But his clothes, his jacket, every pore of his body is tainted with the smell of Marlboros. Does he remember what happened to the Marlboro Man? He's dead. From smoking Marlboros.
I don't pretend to be a paragon of parenthood, but I can safely say Max had all the requisite lessons and warnings about the dangers of smoking. Between home and health class he has all the information he needs. But I'm not fool enough to think he could escape the influence of friends and television and high school, and that's why I think he started in the first place. Damn outside influences.
I caught him once, smoking a cigarette during a college visit when he was in the search phase as a high school senior. He and his friend had gone ahead of my husband and me, and we found them skulking behind a building, drawing a long drag and blowing it out slowly in the manner of kids who imagine they look cool when they light up. I was shocked at this vision, and dismayed. My heart sank. Though it wasn't my fault, I still felt like a failure. What lack of parenting expertise caused my second child to feel compelled to put a cigarette in his mouth and damage his lungs, his teeth, his skin, indeed every cell in his body?
When Cliff was three years old, my husband and I began trying for a baby brother or sister for him. The year progressed and still no pregnancy. I was diagnosed with secondary infertility. The thought that I might not be able to conceive again was incomprehensible. I come from a family of eight children. I wanted a big family too. After two more years of specialists, tests, medication, a minor surgery followed by major abdominal surgery to correct the problem, I became pregnant. All that effort, pain, longing, and single-minded focus finally paid off. When Maxwell James Taylor was born, I was overjoyed. He was, and is, my precious boy.
Staring and staring at him in my hospital room, I reflected on all I had gone through to have him. I had had an emergency C-section and lost a lot of blood. I was white as a ghost. But I didn't care; my son was here! I think back to his cries, the pink, perfect lungs he used to let me know he needed something.
So forgive me if I feel pain at the way he's treating the body God gave him. I would do anything to get him to stop before it becomes so much of an addiction that it will be impossible to quit without immense struggle.
And how funny (ironic!) is it that he religiously works out at a gym? What does he think will happen to all those muscles he's cultivating if his lungs go? Perhaps like most teenagers, he believes himself to be indestructible.
My brother, Tony, at my request, talked to Max last year about not smoking. Tony is a lifelong smoker and he has the crummy heart valves and the decreased lung capacity to prove it. Tony started his family late in life and now, wants nothing more than to be here for his children. Fifty-seven years old and he can't get that particular monkey off his back. So, Max told him he had a plan: he would smoke for the duration of his college years and then quit when he graduated. Such innocence. Or should I say, such ignorance?
And what, really, can I do to make him stop? He is of age to make his own choices, even if those choices suck.
I don't know. To that end, I have added Max's smoking to my ever-lengthening list of worries. Will cigarettes be his undoing in the end?  This is when I have to remember the Serenity Prayer. There is nothing else to do.


Sunday, December 12, 2010


"Come in. Sit down. Relax. Converse. My house doesn't always look like this. Sometimes it's even worse." ~my mom's refrigerator magnet from 1971

I've just taken a good look around my house and have declared it a disaster area. I'm surprised the Governor of Massachusetts hasn't been called in to make it official. There are dust balls under the furniture, the windows are dirty, everyone's laundry is spilling over out of the hampers. The tidy piles I make of newspapers and catalogs and mail are not so much piles as they are misshapen blobs. While I wouldn't say my house is dirty in the same way that say, the Greyhound Bus station is dirty, I'm mortified when someone comes over, embarrassed at the boxes in the dining room (my new furniture hasn't arrived yet) and at the dog hair embedded in the carpeted stairs. None of the pictures went back up on the walls after they were painted TWO MONTHS AGO. The kitchen floor isn't looking too hot either.
At times like this I get aggravated at everyone who lives in this house, including me.  I berate myself for not being one of those parents who made their kids do chores. I never even made them clean their rooms. I'll tell you why. I'm impatient. I can't wait for things to be done. I can do things faster and more efficiently than my husband or my kids. In the years I didn't work, or only worked part-time it was never an issue. After everyone left the house I could clean with no one in my way. Ah,I miss those days. Sort of.
I've been thinking about why my house is in such a state. I promised I'd tell the truth, so here it is: I don't want to clean every minute of my life. I want to watch The Apprentice. I want to sing songs from West Side Story to Cliff and make him laugh. I need a nap. If I'm cleaning, I'm not exercising, or reading a book or talking to my kids. If my house is all clean all the time, I'm not living. When am I supposed to have my tea?
I suppose if things get really bad, I can always hire The Maids to clean the house for me. But that means they'll come in my house and see that it's not clean. So before they come over I'll have to clean up. Oh what the hell. If you come over don't expect perfection. We can have coffee and a few laughs. Just don't give me the white glove test and everything will be just fine.

Sunday, November 7, 2010

R word

"Our lives begin to end the day we become silent about things that matter." ---MLK

As I stood in line at CVS today, waiting to purchase a few gift cards, the woman behind the counter seemed nice enough. She looked to be about sixty, with short blonde hair, a stylish woman with a heavy Boston accent.  I've seen her before. I'm pretty sure she's the woman who assists in the beauty and make-up aisle. When it was my turn, she seemed to me to be out of place behind the register, someone who was filling in because the store was busy with customers. She activated the gift cards, except for one card she couldn't figure out. She stood there, looking from the card to the register, absent-mindedly rubbing the glue off the back of the card as she tried to figure this one card out. Without looking at me, she remarked, "I'm really not a retard. I just haven't done this kind of transaction in awhile."
There was a delay in my brain, something like the delay you see when a TV commentator is interviewing someone in another part of the world, and it takes a moment for the person to respond. I questioned whether I actually heard what I thought I heard. I looked around to meet the eyes of a woman just behind me. She'd heard it too. The shock must have been registered on my face because she slowly shook her head and quietly sighed.
At that moment, my fight or flight response kicked in, but I knew I couldn't act. There were people on line behind me and only one cashier. If I chose that moment to speak my mind, it would have only embarrassed her. This needed to be a teachable moment, but I did nothing. I finished the transaction and walked away.
Before I tell you the rest of the story (you didn't think I'd let that go, did you?), I will tell you that mothers of children with disabilities have to become militant moms. Sometimes the personal  becomes the political. But there are times when a situation like this has to be handled delicately.
Let me digress for a moment. A few years ago my husband was sitting around a table of colleagues from work eating lunch. One of the men, who didn't know Ken well, made a remark about people with Down syndrome getting plastic surgery. God knows what brought that up, but the man said something to the effect that plastic surgery wasn't going to help "someone like that. They'll still look retarded." After a very uncomfortable silence on the part of those who do know about our son Cliff, my husband decided to let it go. I asked him how he could possibly walk away and say nothing! He told me that he knew, after lunch was over, that someone would take the man aside and tell him. Ken thought he'd learn the lesson much more effectively that way.
I walked out of CVS heading towards my car. I unlocked the car and got in. My heart was pounding practically out of my chest. For twenty-five years, I have never, ever let something like that comment go without speaking up. Locking up the car, I went back into the store and saw the same long line. I had no plan at that point. Then, I approached a woman towards the back of the store and asked, "Are you the manager?" She answered yes and I took a deep breath. She listened to what had transpired and she saw how one word had made such an impact on me. I told her I didn't want her to reprimand the woman, but to explain to her, and every employee, what is acceptable in the workplace and what isn't. How what you say reflects on who you are, and ultimately, on the business. And how words are powerful, whether you realize it or not.
Who am I? I am part of the resistance movement. A movement that says, you will not use hate speech about my child. Whether you meant any harm or did not mean any harm, you cause harm when you say that word. When you say it, its meaning reverberates out into the world. You may say you are not insulting my child, that it's a word everyone uses, that it doesn't really mean anything. But each time you say it, you reinforce the acceptance of it, and no matter how you spin it, it's hurtful and wrong.
I hope, with all my heart, that the blonde woman in CVS will remember and take to heart what her manager tells her. It's my hope that if she realizes it's not okay to say it at work, it's not okay to say it anywhere. Maybe, just maybe, that understanding will reverberate out into the world instead.

Friday, October 22, 2010


"Always toward absent lovers, love's tide stronger flows." --Sextus Propertius (Roman poet)

When Ken goes away on a business trip, I don't especially like it. It's impractical for him not to be here. He drives Olivia to school, cleans up after dinner, listens to me tell stories ad nauseum about my job, leans against the kitchen counter trying to look interested as I complain about my hair. He is a very patient man. He's been gone more than he's been home the last few weeks, off to Germany for five days, home for 3 and then off again to San Diego. Three more trips and he's done for this year.

I firmly believe in looking on the bright side, finding the silver lining, the flip side of the coin, because I really am a half-glass full type of person. So I have to confess that there is a very small part of me that feels giddy when he announces, with a sigh, that "They're sending me to ____ (fill in the blank with either an exotic country or somewhere in Silicon valley) and I'll be gone for x amount of days."  Let me be clear, however, in case you don't know, I do love my husband. A lot.
So given that declaration, why do I  feel a little giddy when he leaves? Let's begin with the dinner thing. I dislike everything about dinner, except eating it. The planning, the shopping, the preparation, all of it. I'm no June Cleaver. But my background as an Italian daughter compels me to make dinner. It's like the salmon swimming upstream, you know? Or the swallows coming back to Capistrano. Gotta do it. It's certainly not Ken compelling me. If, upon entering the kitchen when he comes home, he sees no obvious clues that dinner is at least in the works, he'll innocently ask about it, hopeful that there is some sort of plan, one that won't take two hours. It's sad, really. It's like the laundry, which I also never do. When he makes that hopeful trip down to the laundry room, looking for a white t-shirt or some black socks, I actually feel bad for him.
Eventually, I do present him with something edible, and all is right in his world.
He left yesterday for D.C., and dinner, when he isn't here, is now purely an option. I can cook it, or not. I can eat cereal, or a Lean Cuisine if I feel like it. I can make something with mayonnaise in it, which makes Ken want to throw up. If I really wanted to, I could make spaghetti four days in a row, or have take-out minus the guilt.
Tonight, I'm going to leave the TV on in the bedroom the whole damn night. There will be no stolen covers. He won't use the coffee cup I like best. The bathroom towels will be folded on the towel bar just so. The cacophonous jazz music on the radio will not send me over the edge until I want to jump out a window to get away from it.  If I haven't shaved my legs, it's ok.

May I remind you that absence makes the heart grow fonder? It does in my case. Look, Ken and I never get to go away alone. Two teenagers, a son with special needs? Yeah, not gonna happen. So I'm glad he gets to travel and occasionally see sights he would not otherwise see. The Great Wall of China, beautiful German architecture, the busy streets of Japan.
And if you're happily married, you get to look forward to seeing the man you married 28 years ago, who still thinks you're beautiful without makeup on. Who pretends not to notice the wrinkles, the c-section scar, the bunion on your right foot.
If you're lucky, like I am, by Friday you have had enough of the alone time already and the giddy is gone. When he walks through that door, you will be so very glad to see him. Home. Safe.
 And then, all is right with my world.

Tuesday, October 19, 2010


"Things don't change. You change your way of looking, that's all."--Carlos Castaneda

It would be a mistake to think I don't see the disapproval in your eyes. You think because I allow my kids to pierce their tragus, their bellybutton, their nose, that I am a lesser mother for it. What kind of mother would encourage that sort of thing? They look like hoodlums, for God's sake, or worse, the sort who would do drugs and steal your car. Kids who have more holes in their bodies than they were born with must be poor students, disrespectful of authority, having sex at 14.
I used to think just like you. When I'd see a kid with piercings my immediate assumption was that he was troubled, or got into trouble on a regular basis. I couldn't have been more wrong.
On any given day, my kids' teenage friends sit at my kitchen table doing their homework, intermittently rummaging in my fridge or the cabinets for anything edible. They are making vomit sounds, yelling, "Gag me!" or laughing hysterically. They are also reading The Great Gatsby aloud and answering the odd math question. Most of them have pierced several parts of their bodies, and have plans to pierce a tongue or an eyebrow. And so what?
I wonder sometimes at the adults who sit in judgement of a kid who makes a choice different from his or her own. My own family has looked askance at me because of my seemingly liberal view on this subject. It's hysterical  because anyone who is acquainted with me knows I'm pretty conservative politically, the lone Republican in the sea of Democrats who sit around my parents' dining room table.
I just believe that kids need to express themselves in safe ways. I've always discussed Max and Olivia's piercings ahead of time and have made sure they thought long and hard about what they were about to do. Olivia is my fashionable kid and Max is the artsy type. Their piercings fit them.
Doesn't this view of kids with piercings come from a place of ignorance and intolerance? One could make parallels between that judgement and the judgement of people with disabilities who look, act, learn differently. I vote that everyone take a step back and look beyond the nose ring, the wheelchair, the facial differences, and quit the judgemental crap. You may very well find your theory is full of....holes.

Tuesday, September 28, 2010


I was thinking this morning about why I chose to name my blog "A Different Family". Aside from the fact that my husband was pushing and pushing for me to come up with something already, (I threw out that title and it stuck), why that particular description of who we are? I think it may have to do with the fact that I was a niche writer for several years. That is, I wrote about a specific subject--namely disability topics--and I don't think I've ever thought of being anything else. Obviously we are a family living with a difference so I've always thought of us as different from our friends and extended family. In most ways, I suppose we're typical, but a child with a disability gives us a unique perspective about life.
For instance, because Cliff was our first child, my other children possess an understanding and an appreciation of people with disabilities that their friends do not have. I went from being shy and quiet to speaking out because I had to be Cliff's voice. Ken became an advocate and I think we both became that much more connected to each other.
So I guess you can say I named the blog what I did because we are different people than we would have been without Cliff in our lives. His life made ours more meaningful and purposeful. His struggles and challenges and successes are also our struggles, challenges and successes. If you are living, as we are, with a difference, the trick is to embrace it. Embrace the differences with grace and gratitude. It's all good.

Monday, September 27, 2010


"Thank you God, for all I have. Please bless Mom and Dad, Max and Olivia. Bless Grandma and Grandpa and all my family and my friends. I love you. Amen." --Cliff's prayer

I try not to think about the things I regret, but sometimes they just stare and stare at me until I acknowledge them. In this case, Jesus was the one staring me down in church last weekend. If it's ever happened to you, you know how unsettling that is. What happened was, I watched a young woman with Down syndrome receive her confirmation with some kids from my parish. She did a beautiful job and I was moved to tears as she recited her responses to the Bishop and proudly made her way back to her pew. At one time, my son Cliff, who also has Down syndrome, attended church regularly and participated in a religious education class. He loved it purely for the social aspect of it, but he managed to learn the Our Father and Hail Mary. I have a gorgeous picture of him on his First Holy Communion day in a pair of light-colored khakis, a green polka dotted tie, and a joyful smile standing in front of the statue of Mary. Or maybe it was one of the saints. Anyway, after the age of 13 we gave religious education the old boot because I just couldn't find anyone who knew how to teach a kid with profound difficulties grasping such abstract ideas as God and Heaven. Whenever someone referred to God as his Father, he'd look at us like we were stupid because everyone knows his dad's name is Ken!
As I watched Katie smile and wave at her parents last weekend, I couldn't help but wonder about what Cliff might have accomplished had I figured out how to continue with his lessons. What possibilities did I close off by taking him out of CCD? What friendships did I prevent just because he couldn't grasp the material being taught? There's just no way to know these answers. But I think if I really examined what I was thinking at the time, I'd realize that some things just aren't meant to be. And that's okay. I would realize that I did my best with what I knew at the time. We all do that as mothers, right?
I guess that will have to be enough.

Letting Go

"You will always have what you gave to love"--Beth Nielsen Chapman

Every day, my children break my heart. When I look at them, I don't just see the young adults that they are. In my mind's eye, they are four, still holding my hand, or seven, showing me the smile with missing teeth, or babies, looking at me as though they've never seen anything more mesmerizing than my face.  Once upon a time, they needed me more than they needed their friends, wanted my company more than they wanted their space, desired my attention more than they desired a phone or a car or a Facebook page. Ah, but that is the true irony of parenthood, isn't it? You bring them up so that they don't need you anymore.
I remember when people used to say to me, "Pay attention, write everything down, remember, because it all goes by so fast." I paid attention when I could, had no time to write every single memory, and remember perhaps a thumbnail of what has transpired in all these years. It just isn't possible. And now I find myself looking at the pictures of their childhood, recalling with wistful longing how I held them, read or sang to them, sat with them through countless episodes of Sesame Street, Power Rangers and Little Bear.
Last week's episode of "Hoarding" really resonated with me. A woman with three children couldn't throw anything away, especially toys and books and other things that reminded her of earlier times with them. She was so obsessed, she had even driven her husband away. He moved out three years earlier because of her need to keep everything and fill the house to bursting. One day, the therapist working with her asked her to repeat a phrase. It went like this: "I cannot bring back their childhood. I cannot bring back their childhood. I cannot bring back their childhood." As the woman repeated the mantra, her voice broke. And as I listened and watched the pain in her face, I understood and cried along with her.
I suppose I'm romanticizing those days, much like women do before they have children. You know, as if motherhood isn't full of dirty diapers, endless crying (the babies, not me! Well, maybe me.) and major sleep deprivation.
So it won't surprise you to know that now I treasure, with my whole heart and soul, these other, newer times with my kids. I'm not holding my baby daughter, but I have held her through a break-up and an unsuccessful bid to make the field hockey team. My middle child may no longer need to hold my hand, but when he shares his problems and worries with me, listening is a lot like hand-holding if you think about it. My oldest, well, he's another story. He will always need me, because God sent me a child with Down syndrome. Maybe, just maybe, God knew how much I need to be needed. I have to think that the love I've given will come back to me, as Beth so beautifully put it. I'll need to amend my first statement then. My children don't just break my heart. They fill it up too.

Tuesday, September 21, 2010

"If you are what you should be, you will set the whole world on fire. Let the truth be your delight...proclaim it...but with a certain congeniality." ~St. Catherine of Siena

I hate to talk about myself, but I love to write about what happens in my life. I especially love the idea of sharing my thoughts about my children, who are amazing young people, and my husband, the love of my life. But let's face it: no one's life is perfect and I have my share of frustrations and ridiculous crap on a daily basis. I'm the mother of two teenagers and a 25-year-old son with Down syndrome, so I'm here to tell you...crap happens. I decided to start a blog because it will be less time-consuming than therapy, fewer calories than the giant, 2-lb. bag of chocolate candies I bought from the Sweet Factory, and cheaper than online shopping. I hope that, from time to time, you'll be able to relate to my life and to my ruminations and viewpoints. I promise to try not to bore you to death. I promise to tell the truth (you'll have to trust me on that) so that perhaps, in some weird, voyeuristic way, we will be connected.  Ready?