A Time to Grieve

My dad died last month. Because he had many friends and relatives, we wanted to make it possible for all of them to pay their respects, prompting us to wake him for two nights instead of one. There we were in the funeral home, all of us completely broken up by the sight of my father’s body, when in came Cliff, my adult son, accompanied by my husband and my other son and daughter. I had been worried about how Cliff would react to seeing his beloved Grandpa this way, but it was important for him to be part of this process of saying goodbye. We watched with curiosity, waiting for what he might do. Through the two nights’ duration of the wake and the subsequent Mass and burial we watched him, wondering what, if anything, would happen. The two of them had a close bond. In truth, all the grandchildren were special to my dad; Cliff, however, is the only grandchild with Down syndrome and had known him the longest—almost twenty-eight years—except for the oldest grandchild, forty-two-year-old Gerry.

For a person with Cliff’s intellectual challenges, there is a significant delay in processing abstract ideas such as death and time. When Cliff was thirteen, we moved from New York to Massachusetts and it was a good two months before he understood that we weren’t going to return to his yellow house on Lakeside Drive. He wasn’t able to verbalize how much he missed his school, his friends, neighborhood, his room, all the articulations of “home”. Suddenly, he seemed to have lost all interest in what once made him happy. He stayed in his room more, smiled less, and his colorful personality turned a dim gray. Tears fell from his eyes at random times for no reason apparent to me. Cliff is a young man who doesn’t cry, another anomaly I can’t explain. I couldn’t remember a time when he cried other than when he was small. I brought these concerns to the finest doctor I knew, Boston’s Dr. Allen Crocker, who met Cliff and me one afternoon in his office at Children’s Hospital; he surmised that Cliff was depressed. I had suspected as much, and was both dismayed and clueless about how to help him. We decided the best course of action was to begin a regimen of anti-depressant medication as well as a search for activities that he might enjoy. At first, I had to practically drag him kicking and screaming to each activity but once there, he perked up. Within a couple of weeks of starting the anti-depressant, the black curtain was pulled back, revealing once again the sunny disposition with which he was born. Three months later, the medication was discontinued and he was happily acclimated to his new surroundings.

I have been preparing Cliff for my dad’s death for several months. Taking walks at our town common, helping him with his bath, putting him to bed, all became opportunities to talk about it. “Grandpa is old and his body hurts him,” I’d say. I would tell him that when someone’s body doesn’t “work” right, they die and go to Heaven, and we can’t see that person anymore. “I think Grandpa will die soon and go to Heaven, Cliff. We’re going to miss him and that will be a sad, sad time.” It is not clear to me what he absorbed of those conversations.

On a snowy, cold night in January, the moment I had dreaded had arrived. Cliff entered the room in which his Grandpa was laid out. I went to him, taking his hand and leading him to the kneeler. I said, “Cliff, we’re going to say a prayer for Grandpa and tell him we love him.” Smiling, he approached, kneeling next to me. What he did then, and what he did subsequently, speaks to the innocence with which he deals with the aspects of life he doesn’t understand. He draped himself over the high part of the kneeler like a blanket and reached his hand out to touch the silky insides of the casket, observing the still form of someone he had loved in life, and who loved him back. He looked from Grandpa to me, smiling and emitting what sounded like a soft, sustained staccato-like giggle. It’s the sound he makes when he’s nervous or confused.

“Tell Grandpa ‘I love you’”, I coaxed him.

“Love you Gampa”, he said. We stood up and he walked over to my mother and hugged her for a long time. The rest of the evening and into the next one, Cliff sat contentedly in a chair, saying hello and hugging anyone who asked for hugs, and some who didn’t. He never complained once, which under normal circumstances wherein he’s sitting around for hours without food, drink or his iPod, he most certainly would have. His understanding of the situation was present on some level; he knew something awful had happened, that people were sad enough to cry, and he had to be quietly patient. I believe people with Down syndrome, particularly my son, do have the capability of insight. Because Cliff is mostly non-verbal, he has a good “EQ”, or emotional quotient, and can be sensitive to the emotions of others. In the book, Mental Wellness in Adults with Down Syndrome, the authors state that “one of the ways people with DS may compensate for a lack of abstract thinking is by being very sensitive to the feelings and emotions of others (what we call ‘emotional radar’). They often interpret and respond to other people’s behavior through this lens of understanding.”

I should add that people with Down syndrome (and let me say there are exceptions to this rule) when faced with the death of a loved one, can take up to six months to process that loss and all its implications .He/She will come to think, If my loved one is gone forever, that means he won’t sing to me anymore, won’t take me places, won’t make me laugh or hug me anymore.  This is a huge worry, naturally. I have no earthly idea how or when Cliff will show his grief at a monumental loss such as this one.

When we returned to New York and visited with Grandma earlier this week, he hugged her for a long time. “Gramma, Gramma”, he said into her ear. Does he know the depth of her sadness? I tend to think he does, but whether he does or doesn’t, she felt comforted, if only for a moment. That’s all we can hope for this early in the game. If the time comes when Cliff grieves in earnest, I hope to recognize it and make it all okay, as my dad would have done for him once upon a time.

Questions

You may think this post is a departure from what I usually write for my blog about marriage, family and having a son with Down syndrome. You may be right. I've discovered it's important for me to write in different genres from time to time, and about ideas that interest me. So...this one is a poem I've been working on for several months. It's gone through many edits, with several writer friends giving me their helpful feedback. The origin of the poem came from the suggestion of a professor in a continuing education class I took called "The Writing Life." He came up with a writing prompt which was to complete this sentence: There are two kinds of people in the world--people who (fill in the blank) and people who (fill in the blank).With very little hesitation, I filled in the blanks with 'people who are afraid of everything and people who are afraid of nothing'. Why did I choose these two groups of people? Ah, wouldn't you like to know! Let's just say some people I know and love are at a crossroads in their lives and have been "stuck" in a groove out of which they have not moved in a long time.
Think of it as a meditation on fear and on what keeps us from pursuing our dreams.

Celia

                                                               QUESTIONS

                                          What are you afraid of? Does it feel

                                          like the dark water of a chill autumn lake,                                               

                                         where you are underneath, struggling to breathe?        

                                          Or do you feel the weight of fear

                                          inside your roiling belly,

                                          a fierce ache

                                          soothed only by flight?

 

                                         What are you afraid of? Does it bring

                                         you to your knees, collapsed on the

                                         tired linoleum, fists raised to Heaven,

                                         forsaken and hopeless?

                                         Or do you sit alone in your room and close the shades,

                                        surrendering to your episodic apathy,

                                        and sleep’s escape for rescue?

 

                                        What are you afraid of? Do you see

                                        fear reflected on your face, as in a funhouse mirror,

                                        distorting your thoughts until it seems the world is

                                        too wide, too harsh, and unable to love you?

                                       Or do you look around at others, meekly

                                       measuring the caliber of their stature

                                       against your own?

 

                                       What are you afraid of? Is this your life?

                                       Can you ask yourself

                                       to abandon dread and panic,

                                       to risk, to jump in blindly with calm expectation

                                      of bursting up and out?

                                      Is this all? Or can you widen your narrow scope

                                      to see the promising landscape?

 

                                     What are you afraid of? Will you stop

                                     hating yourself long enough to take a chance,

                                     to push off the edge like a swimmer who,

                                     to gain momentum, plants her feet against

                                     the sides--knees bent, and eyes wide open,

                                    concentrating on the win, and fully committed

                                    to this journey?

 

 

 

 

 

Birds in the Fog

She could not seem to find her way out of the melancholy that had become her companion in the weeks before Christmas. It was not depression exactly, nor could it be qualified as the blues. Despondence perhaps, or a poverty of the soul.  When her husband asked, “Are you feeling okay?” she smiled wanly, replying with all the energy she could, “Yeah, sure. I’m good. Just tired, I guess.” She did not know how to tell him what she felt; she didn’t want to have to try to explain feelings that were as difficult to discern as a bird flying through evening fog. He was black and white, exacting and no-nonsense. If one felt sad, one should be able to express the source without fuss or forethought. Figure it out, acknowledge it. Move on. He was used to her gloomy moods after thirty years, and was generally sweet about it, hugging her by the kitchen sink, helpless to cure whatever it was she denied with her false cheer. She became adept at quietly stepping into the bathroom and closing the door to cry, to avoid the questions she could not answer for herself.

She imagined the Christmas he had a month after his father died. 1973. It must have been impossible to feel any joy when you were fifteen and you missed your dad terribly, and you worried about your mom and sisters. He must have had to be so strong for them. She cried just thinking about it, her husband as a boy, crying in his own bathroom with the door closed.

This is what she did when the curtain dropped over her, like those heavy, dark velvet stage drapes falling in a musty theater when the show ends, and the euphoria of a moment before begins its descent into memory. This is what she did: she found places to cry—the shower, the car, the roads leading away from her house, and then she thought about ten other reasons to be sad, hoping to put it all out there at once for practicality purposes. Like cleaning out a cluttered closet so that when you walked back into it, there was order and a clearer path with no shoes to trip over.

She knew this much—she was lonely for her children who were growing up and felt less and less like being with her. She had spent all that time growing them but they seemed to have germinated like dandelion fluff, and spread far from the genesis of her body. She was lonely for her family, the closest of whom lived almost 200 miles away. Everything she did to get ready for the holidays, she did mostly alone, so that in her gloom, she wondered why. When she tried to answer her own question, it made her choke up; her children had friends and lovers, and they had taken precedence over family traditions of tree decoration and watching holiday movies together. She supposed that was the way things worked, how it was for everyone, but it didn’t make her feel any less bereft.

One day, she decided on a whim, to step into a church instead of the bathroom. The heavy door opened into the dim lights used between Masses, and to the mounds of red and white poinsettias on the altar. Walking slowly up the aisle, it felt unexpectedly and surprisingly familiar, like a cherished photograph unearthed from a long-forgotten box stored in a bottom drawer. At the altar, she knelt and crossed herself, as she had learned to do as a child. When she sat down and looked up, she realized she had found a new place to cry, in the fourth pew of St. Mary’s Church. As she dabbed her wet cheeks, she finally felt the comfort she had not remembered was here. Her tears dropped to the folds of her smiling mouth, and the presence of God smiled back.

 

The Companionship of Books

“Thou hast only to follow the wall far enough and there will be a door in it.”—The Door in the Wall, Marguerite de  Angeli, 1949

In one of the very favorite photographs I have of Cliff, he is a four-year-old Reading Buddha. Sitting cross-legged on a miniature red plastic rocking chair in his bedroom overlooking our backyard, his focus on the page is almost trance like. On the floor surrounding him is the deep, wide sea of books he had already looked at, having carelessly allowed each one to fall to the floor once he reached the last page. He’s dressed in a Pull-Up and a red sweatshirt, his soft, silky light brown hair falling softly across his brow, head bent close to the page as his little tongue rests between his lips.  I love that picture for the memories it evokes, and for the serenity reflected in his posture as he "read" Love You Forever.

Cliff had always had a preference for books over toys which, I suspect,  had something to do with his difficulty figuring out the way some of his toys worked, including those for which he needed a more expansive imagination. He sometimes required my company to model the ways in which he could play with the Little Tykes play house and the kitchen set, or with building-type toys meant for kids with better fine and gross motor skills.

"Mumma", he would say in his velvety-rasp of a voice, forming the sign with his right hand, followed by the sign for "help". He had a good attitude towards at least giving each toy a go, because he enjoyed watching me act out the directions, which was as much fun if not more so, as the toy itself.

Looking at my little Buddha picture, I can recall that at the end of each day, I would go into his room and place the books back on the shelves, sometimes to the point of exhaustion. That’s how large a collection we had. I counted them out of curiosity the day I took them off the shelves and packed them into moving boxes.  The 350-plus books we had accumulated by this time traveled the highways on a U-Haul truck, through three states to our new home in Massachusetts because I could not bear to get rid of a single one. Cliff possessed an absurd number of books, which to some might smack of indulgence. But Cliff was our only child for his first six years and we loved to lavish him with all the books his little heart desired. Books made him happy and all I wanted was for him to be happy, deliriously so.

At the time the photo was taken, I had every reason to believe Cliff would someday learn to read. I knew other people with Down syndrome who had that ability and, though I knew it would take time, I was not cynical about the possibility. He had certain pre-reading readiness skills, such as naming the letters when I pointed to them, matching letters with the sounds they made and, of course, motivation. Then, cruelly and incomprehensibly, at around eleven and a half, the age at which he showed the beginning signs of puberty, he began a regression in reading and speaking that essentially was irreversible. It was very gradual, but heartbreaking in its cumulative conclusion.  

I have been told by various doctors and speech pathologists this can happen to a small number children with DS for no reason anyone has been able to definitively identify or understand. The teachers and my husband Ken and I nonetheless continued in our efforts to teach Cliff to recognize at least some sight words. I wasn't ready to give up. Eventually, however, we made the decision to stop teaching him to read words in the standard way, instead immersing him in what are called “picture symbols”; this method is a tangential form of reading that has value beyond just the reading of stories. It is also a type of augmentative communication tool for those who are non-verbal, with which the individual can point to a picture symbol of the type of food he’d like for instance, or of the activity he’d like to spend his time doing on a Saturday, to say he feels sick or hungry, or to communicate a mood--sad,happy, mad, etc.

The teachers wrote picture symbol stories for Cliff to read. Sometimes they were about his day at school (“Today I went to gym and played basketball with my friends”). When he came home, he would read to us about his daily activities. I also got in on the action by purchasing software to use at home; Mayer-Johnson picture symbols was a godsend as it allowed me to write simple stories for him about his family, holidays, and social stories about manners and emotions. There were picture symbols for everything, including pronouns, prepositions and articles. Reading had become accessible to him through a technique that made him feel successful. He never actually became fluent as a picture symbol reader, but it was enough to engender in him a genuine feeling of accomplishment and pride as we sat and read together.

When we moved into our new home in 1997, about half the books were hoisted up the attic ladder in boxes and bags to be dealt with “someday”. But many were kept in his room because his love affair with all kinds of books would continue for a long time to come. We never abandoned the books he had come to associate with cuddling on the couch next to me, especially after “Googie” and “New Baby”, his pet names for his brother and sister respectively, were born. Naturally, I continued to buy books over the years, books that were clearly meant for young children rather than a young adult. But other than the picture symbol books we created, these were the stories he still enjoyed and was able to comprehend. I did explore reading chapter books about his favorite TV show—Full House, reading two or three pages of a chapter before I realized he wasn’t really following the storyline.

Almost sixteen years later, my general frustration with the clutter upstairs had reached its pinnacle, forcing me to make time for my “Operation Attic” project.  One day while standing on a pile of my daughter’s pink flowery baby dresses that had spilled out of a box onto the floor, a switch turned on in my head. It’s the same switch that goes on when the refrigerator has too many of last week’s leftovers. I surveyed all the accumulated “stuff” of the kind George Carlin used to build comedy shows around, and I felt like a lost child in a department store, bewildered about how to find my way. In the spirit of the words of Lao-Tzu, "A journey of a thousand miles begins with a single step," I picked up the first box. No fewer than seven bins and bags of Halloween paraphernalia were the first to go. I avoided the books at first, because some of them, the ones whose titles were visible from my vantage point, were calling to me, messing with my determination to stop holding onto stuff that no longer held the same magic, but whose presence brought back to mind a little boy on the cusp of becoming a reader.

They were everywhere, spread amongst the stuffed animals and elementary school art work that likewise have a vise-like grip on my heart.  I looked into each box or bag, and whispered aloud, “Oh!” and “I loved this one!” when I picked up a particularly special book. Each corner, every area I thought held old clothes or ornaments or crib toys or junk, revealed a monumental hoard of books born of a love of reading, yes, but also of simple moments unburdened by ambitious motives.  Each subsequent discovery of yet another assemblage of Dr. Seuss and Little Critter stories weighted with memory made my heart sink; I had anticipated this excess of books, but not the bittersweet recall of an unrealized dream. Cliff would never learn to read, no matter what I had or had not done, or the choice I had made to give up and concentrate on other routes to “reading”.

 As I slid each heavy load down the unfolded attic stairs to my son Max, who ironically, reads perfectly well, but has neither the time nor the inclination to pick up a book, he would exclaim as to the discovery of yet another cache of books spilling into the hallway.

“Whoa! Mom! How many more ARE there?”

It took almost two weeks to examine each book and decide which of the piles would become that book’s destiny--keep, give-away, or toss. I  asked Cliff about some of them, but he clearly indicated, via the use of the same expression he uses when his iPod is out of power, that this would be my task, mine alone.

In the end, I was proud of myself for keeping only three boxes full. I didn’t fret too much over the books that were too damaged from age, or the ones that weren’t well-written. Many I kept simply because they are no longer in circulation and I could never replace them. Otherwise the keep pile was strictly for the books I remembered best, or those with an inscription inside the cover: "To our Cliff-Boy, Love from Mommy and Daddy", or the books Cliff might still enjoy. Some were books for which Max or my daughter, Olivia, claimed some nostalgia. I imagined reading to the grandchildren I hope to have someday. I’ll tell them, “This one used to be your Uncle Cliffy’s favorite book.”

On the last night I placed the final rescued book in its designated area, I brought Ernie's Big Mess into Cliff's room and asked him if I could read it to him before bed.   As I read, I spoke with a British accent just for the hell of it. It had a bit of the aristocracy of Downton Abbey, mixed with the silliness of a Monty Python skit. As I had hoped, my dramatic reading of Bert’s frustration at his roommate’s slovenly ways made him laugh. I said, “Cliff, you are too old for this book, but I still love it. It’s actually pretty funny, right?” His eyes were closing, but he managed to answer in the affirmative before falling asleep.

“Thanks for reading with me, Cliff Boy. Love you. See you in the morning,” I whispered.

In the grand scheme of things, that my kid never learned to read is a small speck of nothing. There are worse things, after all. None of us is good at everything; I don’t know how to swim, though I could probably save myself with a decent backstroke.  Despite my Italian heritage, and an entire family of cooks, I didn't get the cooking gene; at family gatherings, I bring the wine.

 A person can learn a lot from a kids' book:  When Ernie ran away from home after Bert became angry at having to clean up after him, Bert understood Ernie was incapable of living up to Bert’s impossibly high standards. He realized he’d rather have a messy friend than no friend, and he accepted what he could not change. It was a satisfying read about acceptance, one that speaks to the uniqueness of each one of us.

It’s like I used to tell Cliff’s somber-faced grade school teachers and special educators at his Individual Education Plan meetings. I’d finally gotten tired of hearing, “Cliff can’t do this, Cliff can’t do that, He can’t blah, blah, blah”. I looked them in the eye and reminded them I already knew what he couldn't do. I lived with him, for goodness' sake. 

“How about you tell me what Cliff CAN do and work with that?” We all have alternative avenues for getting through a day, finding a way around the obstacles that don’t have to be impediments to some kind of progress.

I’ve been toying with the idea of writing a few stories for adult, non-reading book lovers like Cliff, not about childish concerns, but about topics like work, love, dances, friendship—because he still loves books.  And my grown-up son still deserves to be happy, deliriously so.

 

Beer

"Without question, the greatest invention in the history of mankind is beer. Oh, I grant you that the wheel was also a fine invention,  but the wheel does not go nearly as well with pizza." --Dave Barry

 

When your kid is a teenager, and he starts acting like someone you don’t personally know, (think Ferris Bueller or any of the characters from Invasion of the Body Snatchers) there isn’t much you can do. “Who ARE you?” was the running commentary in my head from my middle child’s thirteenth year to approximately the twentieth. The best you can hope for is a good night’s sleep to buoy up your strength because tomorrow it’s only going to get worse. I don’t care how sweet and adorable your kid is, how often he’s scored the winning point at basketball, how many AP classes she’s in, or the fact that he’s been chosen as first chair in the school orchestra –from time to time he or she will shatter all your hopes and dreams and make you question why you ever had children, and you’ll end up furiously scraping off the stickers on your car that read "Proud Mom" and "I (Heart) My Kids". The good news is you won’t feel that way forever. At some point, when your Karmic past reaches equilibrium with your present, or the child in question has a more fully connected frontal lobe, whichever comes first, he or she will begin to change back into the sparkling, friendly person you recall from their childhood.  I know this because Max has returned to his smart, considerate and funny, thoughtful self. (Cliff, my oldest, hasn't actually done anything worse than steal my breakfast sandwich. My third, however, Olivia, is eighteen and has only recently become “not-Olivia”. I will let you know how that goes.)

Here are eleven words you never want to hear over the phone from your teen’s mouth: “Mom, can you come get me at the police station?” Insert shocked pause here, during which you squint your eyes and sigh. “Please?” Or the equally popular, “Uhh, hey mom. Soooo, I’m sort of a little in trouble.” 

We unfortunately heard those eleven words more than once (but fewer than five times) from our middle child, Max, who will no doubt be really mad at me for telling you all this. Let me preface the rest of the story with the assurance that Max didn’t do anything his father or I, or you for that matter, didn’t do when we were teenagers. It’s just that there were fewer rules and laws back then, (I'm speaking of the 70's here) and the police were more likely to chase you out of the woods or off the high school football field than to put you into the back of their squad car. “Go on you kids! Get outta here before I call your parents.” Then you would frantically toss the beer can you were holding, or the funny cigarette perhaps, and beat it. No adult would be the wiser.

Once I expounded on the uniquely skillful talent of our town police officers and their apparent use of crazy laser-like "Max Radar" that led directly to him and his friends whenever he was about to do something foolish(bringing a 30-pack of Coors to a party directly across the street from eagle-eyed neighbors, for instance), he was a lot more careful. Plus, one mention in the police blotter was plenty for me, and I reminded him each time he went out that I was tired of going incognito whenever I had to go to the local Stop ‘n Shop to buy groceries.  

Then, the most wonderful thing happened in the merry,merry month of May! My son turned twenty-one. Within hours, he had gone to the Registry of Motor Vehicles and exchanged the old, junior license for a new one that proudly announces his status as someone who cannot ever get arrested again for being “a minor in possession.” He has grown to cherish it and proudly flash it about to every restaurant server and liquor store clerk with whom he comes in contact. It’s a beautiful thing.

The other most wonderful thing, if there can be two “mosts”, is the newfound connection between father and son. I call it “The Beer Alliance”. This consanguinity gives them endless opportunities to discuss Max’s newfound expertise on a subject about which they both feel extremely enthusiastic. It’s both an unexpected and delightfully surprising aspect of Max’s adult standing.

 Ken and Max have a close, easy-going relationship, but they are very different. Ken’s get-it-done personality exists in marked contrast to Max’s I’ll-get-around-to-it-eventually one. Where Ken tends to think in a linear fashion, precise and logical, Max has the heart and soul of an artist, and arrives at answers and decisions through the thoughtful processes of a more sentient being.  Max looks at the “big picture” and then breaks it down into manageable parts, while Ken analytically looks at the pieces and then creates the whole.  Left brain vs. right brain stuff. Happily, Max’s and Ken’s teenage years do hold some commonalities, and that’s one of the saving graces of their relationship. These commonalities gave Ken infinite patience when the eleven-word phone calls would interrupt dinner and/or require him to drive to the Franklin P.D.  in the deep freeze of New England weather.    His reaction was the counterbalance to mine, which included expletives, hand-wringing, and staring at Max's baby picture, wondering where it had all gone wrong.

On Father’s day, Max’s gift to Ken was a six-pack of beer, St. Bernardus Tripel to be precise, and a beer chalice.  Max had turned twenty-one just one month before, and the novelty of legally purchasing alcohol was as exhilarating as the blush of first love. It was the perfect offering on a day Ken holds sacred, having lost his own dad before Ken turned fifteen. My husband never had the opportunity to proudly present his father with the gift of a specialty beer he had himself chosen, a simple but transcendent symbolic representation of guyhood, that bastion of male bonding.  His memories of his father do not include matching beer foam mustaches or animated pronouncements of which beer deserves high praise, or even a taste test at the kitchen table over dinner. Boy Scouts, Little League, the Smithtown Volunteer Firefighters Parades, and chess games, yes, but beer summits for Ken and his dad were not meant to be.

I’m inclined to think that Max’s misadventures with beer as a teenager were the precursor to and preparation for his eventual tenure as a beer aficionado.  Ken has become a beneficiary of Max’s expertise, leading to a meeting and melding of the minds—the engineer’s and the artist’s. Have you heard the joke about the pessimist, the optimist and the engineer? The pessimist sees the beer chalice as half-empty, while the optimist sees it as half-full. The engineer, however, sees a liquid containment device twice as big as it needs to be. On this point I believe Ken and Max would agree.

 Fathers and sons, as the sons grow into men and the fathers wonder where the time has gone, must continually strive to find common ground, steer true north for new, ever-evolving avenues of connection. The father must see past the son’s transgressions which have served as learning experiences, because truly, they aren’t so different, at least not where it counts. Some things are meant to be after all, and those times when you question why you ever had children happen far less often than those times when you are incredibly grateful for the gift of those children. They are the best of what life has to offer, despite the occasional hiccups. The memories we will end up holding closest are the good ones, really, like chess games and a dad's first sip of St. Bernardus Tripel. I suppose you can say that's the key to a happy life--making memories and preserving those which are most precious and appreciating the love that dwells in each and every one. 

Let Go Already!

“I don’t know how, but somewhere dreams come true. And I don’t know where, but there will be a place for you. And every time you look that way, I would lay down my life for you. I don’t know why I know these things, but I do.”—Shawn Colvin, “I Don’t Know Why”

The morning’s blue chill wakes me just ahead of the alarm. Despite my inclination towards the genial bent of the spirited lark, as opposed to the moon-eyed night owl, I want to shut my eyes to the rising light edging its way into the space between the window and the shades. Some days my son, Cliff is the alarm, engaging in self-talk from his bedroom on the second floor with no care for the volume of his voice, and no consideration that perhaps the rest of us are still asleep. I have no illusions about sleeping in.

This is home:  sounds of the morning coming from the bedroom down the hall, the rasp of words spoken but unintelligible and raspberry noises on the air. I pull on whatever clothes are immediately accessible and go downstairs to make his breakfast and the lunch he takes to work. It’s important to him to find the food already on the table when he arrives in the kitchen, so I make like a butler for the master of the house, setting his place with the egg sandwich, the plate of fruit, the low-cal breakfast cookie, o j and vitamins. Then I head upstairs to help him dress and wash up. I won’t allow him to leave the house unless he’s clean-shaven and un-mussed. When he was little, I used to dress him in stylish Gap clothes and not allow him to get dirty. It serves me right that at the age of 27, he often eschews cutlery and treats his shirt collar, his sleeves and his jeans like a napkin. Call it the delayed fuck you attitude of adolescence. It makes me proud and angry all at the same time.

Breakfast done, making our way out to the van waiting to bring him to work can be a test of my patience. His quirks include touching doorknobs and doorjambs, peering down the basement stairs and closing the three open doors along the hallway. When he gets to the garage, the tall shoe rack and the railing post on the landing must be touched and held onto before descending the five steps down. I don’t consider this particularly odd behavior; who doesn’t have odd habits? You and I are simply better skilled at concealment. “Cliff, let go and come on.”   Step. Hold. Step. “Let go, honey. The bus is waiting”. We link arms and sing, “the bus, the bus, the bus is here.”

He lets go.

These two words--Let go—have been causing havoc with the caretaker groove I have cultivated since I myself was 27 years old. Cliff and I are as connected as gills on a fish. Letting go is as unimaginable and fantastical an idea as freefalling from space and landing in a New Mexico desert on one’s feet. Someone else can go ahead and try it, but I prefer to sit that one out.

Each weekday I do let him go for precisely seven hours during which his life becomes about meaningful work, social interaction with men and women who live similar lives, and going about his business with no help from me. I trust people not related to him for those seven hours because I know they are fond of him and his quirks, his boyish charm, his willingness to go along with their plans for the day. They are good people, so I let him go. But the idea of him actually living apart from me is very much fraught with the kind of high anxiety usually reserved for combat situations and air traffic controllers. Naturally, I try to avoid thinking about the inevitable, but how long can I realistically hang down from the window ledge by my fingertips before the wind gusts force me off?

And then the question becomes “Should I?” Everyone has an opinion about this. Friends and people “in the field” of disability work, postulate that Cliff should have his own life just like any young man. “Fine”, I say, “but why now?” I know a mom who arranged for her twenty-four-year-old son to live in a group home.  Jonathan attempted to run away three times, trying to find his way back to his mother. I'd give almost anything to have that story erased from my brain.

My original plan to not ever die or become infirm is looking less and less realistic just based on the slight nuisance I call “reality”. To that end, I have started the process of figuring it all out. There’s no reason to hurry so I’m on a five-year plan; I will be sixty by then and much closer to the random-pains-for-no-reason-years. So in the spirit of positive thinking (as opposed to the magical variety) I attended a conference recently entitled, “Building a Home” ; it seemed like the responsible thing to do. Here’s what I learned: No one actually knows anything about “building a home” for individuals like my son, including the presenters. This is the first obstacle to my five-year-plan. You would think someone by now would have created a clearinghouse, a centrally located set of beautifully-appointed brick offices manned by knowledgeable people in career clothes who tell you exactly what to do first, second, third and so forth. Instead, I came away feeling confused by the jargon of the day, terms and acronyms thrown out in the jumbled and bewildering fashion reminiscent of Lewis Carroll's “Twas brillig, and the slithy toves/Did gyre and gimble in the wabe/…”

I do believe my husband and I are on our own, as we reject the current established norm of group homes and Adult Foster Care.  In my fantasy, Cliff will live with a couple of his buddies and an endlessly  patient, fun-loving, song-singing  live-in care provider schooled in egg sandwich-making,  in a charming Victorian in the center of town, with his own bedroom, private bath, and a finished basement for singing as loudly as he likes.

Home should be the place where warmth and contentment grows, and a feeling of lively interaction predominates when he enters. No institutional white walls, dentist office furniture, or wall art from the starving artist sale at the Holiday Inn. No medicinal smells, sterile bathrooms with hold bars in the shower stall, or flat, oatmeal- colored Berber carpeting. These are my terms.

I know, I know. Ultimately it isn’t about me at all. At the core of my reluctance to let him go lies a Peter Pan wish to never grow up or grow old, to keep singing the bus song. But time, in all her irritating insistence, is unstoppable.  Where he will live and with whom and how I will find him his place in the world is what I wrestle with every day. The years ahead will come as quickly as the years behind seem to have gone. When did he grow up? When did I start growing older? Does every mother feel as I do, like the ocean is at my back and the waves come with frightening constancy, forceful and unbidden?

I’ve been hoping the answers will come to me from shining light bulbs above my head, and opportunities will present themselves. I’ll slap my forehead and say, “Of course! Why didn’t I think of that before?”

 It’s time for me to get a better grip on that window ledge, and hold on long enough to find the center where practicality and creative thinking, soul-searching and jargon can meet like careful friends, swirling on a breeze of raspberry sounds to get down to the business of planning for my son’s future.  

Here’s the thing: if Cliff wants to go, it will make all the difference. If he is okay with it, I will be okay with it. Five years from now, maybe the skyfall will feel more like floating on a gentle current of warm air, with all the safety of a harness and the beauty of my billowy parachute. Maybe I can think about that trip to Europe I’ve always wanted to take. Or maybe I’ll just sleep in.

 

Slow

“My grandmother started walking five miles a day when she was sixty. She's ninety-seven now, and we don't know where the heck she is.”
― Ellen DeGeneres

Lying in my bed, I shift my left knee this way, then that. There doesn’t seem to be a position my leg is willing to consider for longer than a few minutes. My knee has every right, after all, to be resentful after everything I’ve put it through in the pursuit of a more healthful lifestyle. At any rate, the torn meniscus should be easy enough to fix, but until then I find myself relegated to going against my very nature. Slowing down is anathema to me. The faster I can do something, the better. I tend to be impatient in lines, driving behind people going the speed limit, waiting of any kind. Moving about in a pokey way holds no charm for me, but I have had to learn to stubbornly go along with it, because my knee seems to want me to, and at the moment, it’s the boss of me.

This injury has put me on a slower, more equal footing with my son, Cliff.  I mean this in the sense of our “mph” rating. He’s not a fast mover, generally speaking. The word I might use to describe the way in which he does most things, is languidly. This morning, for instance, when his van arrived in the driveway and beeped once at 8: 10, Cliff sat in front of his unfinished breakfast, lifting the fruit cup in slow motion to his mouth. The van driver beeped again at 8:14. I fidget and pace; he eats with a tortoise's sense. The fruit cup finished, he has to digest for a minute before he finishes his orange juice. I hover, sing-songing my pleas to hurry, hurry, hurry up. When he is finally out of the chair, he stays true to his nature—in the time it takes him to get from the breakfast table to the van, I could have run up and down the street twice (That is, I could have before the injury). It’s a rare morning to find Cliff ready on time, despite all my pleading, which doesn’t seem to have any effect.  It’s like trying to push the positive and negative poles of a magnet together.

After completing physical therapy for my knee, I was admittedly impatient about getting back to running. I love to run; I feel strong, powerful, as if I could live forever. I’m a sometime believer in the Greek motto, “Nothing to excess”, but not when it comes to running.  When I last left the house alone for some exercise about three weeks ago, my knee hurt but I assured my husband I would just walk. “I’m just going to walk, see how it feels”, I told him as he looked at me skeptically. My promise lasted about a thousand feet. A quarter mile later, it felt as if some small being, a teeny-tiny knife-wielding troll perhaps, stabbed me in the right side of my left knee, thereby causing such pain as to force me to turn back and sheepishly hobble home, to admit what I had done.

If Cliff is the tortoise then I am the hare in this relationship. The hare is humbled and the tortoise is grateful for a mother who is as slow-moving as he is. Our walks have been more pleasant of late, because I’m not urging him along to work off a few calories. To someone driving past, we must look adorable, strolling arm in arm as I point out something or someone interesting around the corner. We stop occasionally to watch the roofers on the house nearby, and admire their skill. “Oh boy, Cliff, do you suppose they’ll fall off?” and “Shall we ask if we can come up there?”
 He replies with a giggle, “Silly mother!”

Here is what I would have missed today if I had run past it all: the perfectly imperfect spider web extending out from my little maple tree; my neighbor’s new hopeful white arbor in her side yard, the first sign she’s moving past her husband’s unexpected death of two years ago; the brindle-colored terrier standing so still I mistook her for a statue; a little boy stepping off the yellow school bus in his pine green, fall jacket, backpack bouncing, as he ran towards his mother, waving the artwork he’d been waiting to show her. And 13-year-old Maddie across the street, singing out on her walkway, uninhibited and joyfully swaying with the music in her head.

I’ve often heard, from others who parent someone with an intellectual or physical challenge, that they have learned patience from their children. Cliff has been a good teacher, but I have no more learned patience from him than he has learned to be in a constant mad rush from me. I must say, however, watching how Cliff walks and moves about in the world, I’ve at least developed an appreciation for the joy of a pace that isn’t all bad. I have had to adapt, just as he’s had to adapt his whole life to a world that doesn’t always wait for him to catch up. He seems okay with that, very happy even.

Thoreau said, “If a man loses pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured, or far away.”

I’m inclined to agree. Of course, as soon as my knee has forgiven me my transgressions against it, it’s a safe bet I will get back into my running. For now, though, I have no choice but to walk in Cliff’s shoes awhile longer, languidly making my way to wherever it is I’m going. Can’t promise I’ll completely embrace the walking life, but I will certainly endeavor to try.

 

To move in spirit to and fro;

To mind the good we see;

To taste the sweet;

Observing all the things we meet

How choice and rich they be. To walk is by a thought to go;

To move in spirit to and fro;

To mind the good we see;

To taste the sweet;

Observing all the things we meet

How choice and rich they be.

 

To walk is by a thought to go; To move in spirit to and fro; To mind the good we see; To taste the sweet; Observing all the things we meet How choice and rich they be.