Regret

 

 

When kids are young, they tend to believe their moms and dads are capable of almost anything. We know everything there is to know; we can perform superhuman feats; we possess the power to create something out of nothing. The everyday contains a magical quality in their little eyes. They believe us to be the most important beings in their world; their faith in us is absolute and unwavering.

The day they first detect the inklings of our failures, flaws, and limitations is a sad day indeed. They break our hearts when we see in their expressions each disappointment, every dashed dream, the evidence they had us all wrong.

It is the beginning of their growing up. The drifting away is imperceptible at first; it catches us by surprise at the first “I can do it myself, Mommy” and “Mom, you don’t have to come with me.” We think, “Oh thank God I don’t have to do THAT anymore.”  We settle into the years of gratitude for not being quite so busy with feeding, dressing, nurturing, comforting, playing, all while trying to make a living.

One day our arms will feel empty, like someone went and emptied the ocean when we weren’t looking. And for the rest of our lives we will wonder where the time went, hold our breath when they go off to learn how to be grown-ups without us beside them.

In quiet moments, we will gaze at their baby pictures and feel the unique pain only mommies and daddies know. The pain not merely of missing them, but the pain of regret for what we failed to do.

Our regret will be expressed in the form of wishes; “I wish I had” and “I wish I hadn’t”. When all he asked was “Mommy, can you play this video game with me?” and all she asked was “Can you show me how to cook?” but you were tootiredtoobusytoodistractedtooboredtooinconvenienced to say yes.

It will feel like we have been stabbed in the heart if we allow ourselves to think about it. We will tend to dwell on all the small things we did wrong because the small things become huge, in the way molehills turn into mountains. What we did wrong will blaze as brightly in our minds as the signs on the Las Vegas strip, particularly at times when our hearts hurt for a million other reasons. All we will wish for is a chance to do it all over again.

Yet there is good news: Despite our failures they will love us anyway. They will forgive us for not knowing fourth grade basketball camp gets out early on Fridays, causing them to wait alone and frightened because everyone else has left. They will forgive us for not getting the right kind of Barbie sneakers, and for making them move far away from their friends when they are thirteen years old. They will minimize all the hurts and disappointments caused by us because that’s what love can do. They will put their arms around us and say, “I’m so glad you’re my mom.” Or be happy to see you after all day at work, or they will surprise you with an entire essay written on Face Book for everyone to see, about what a wonderful mom or dad we have been, declarations of praise we don’t for one minute believe we deserve.

Then we will realize we must have done a pretty good job after all. We will come to understand how hard it is to be someone’s parent, and that we did our best with what we had. We will continue to revisit our failings because we really, really meant to do a better job.  But we will know, in the deepest part of our heart and soul that every day is a new chance to get it right.

 

 

 

Here is a favorite piece by a writer friend of mine, Evelyn Zepf. I think you'll agree it fits in with my post. Enjoy.

 

Last time

 

 

The last time I carried my children in my arms

Was not remembered as a milestone

I never knew

that was what it was

As I lifted to comfort

or carried sleeping up the stairs

 

Remembered milestones are always firsts

First words, first steps, first days of school

We celebrate beginnings

But endings hold a melancholy grief

We don't recognize them for what they are

Always hoping

For just one more time...

 

 

 

Somehow

Somehow I could not have predicted the feelings of giddy freedom owed to a Cliff-less weekend. But there they were, unmistakable and unfamiliar as I drove away from The Friendship Home, a provider of respite care for families like mine. Cliff would spend two days "on vacation” with other men and women living with developmental challenges.  

That is not to say I’m not conflicted about it.  I am simultaneously terrified of trusting strangers to take care of him, and dreamily contemplating the possibilities of forty-eight hours to myself. In the words of Harvey Fierstein, “Is that so wrong?”

Let’s continue along this line of questioning. Is there a woman who has not experienced the push-pull sensation intrinsic in the journey through motherhood? Can we not admit to holding our children tightly to our chests one moment, and flinging them away from said chests in a desperate bid for appeasement in the next?

I have held Cliff tightly for his whole life, going on twenty-nine years, and frankly, he’s ready to fling me away for much the same reason.

Somehow I expected to feel a terrible sense of loss similar to what I felt when I dropped my younger kids off at college for the first time. The tears, the worries about safety, the empty chair at the kitchen table, all of it. What came instead was a surprisingly short-lived melancholy followed by a bit of wandering the house without purpose, followed by a sense of calm. That is to say, I missed him, but I have begun to see the idea of these short excursions away from him as training ground for the future.

The training ground is his as well. I like to call them baby steps—these hours in the company of people who don't know him. As much information as I have given the staff at The Friendship Home about his routines, habits, abilities and challenges, he must still figure out how to make himself understood, how to negotiate to get what he wants.

When my husband and I picked him up on Sunday, he was sitting contentedly in a cushy chair in front of a roaring fire. Not too shabby.

In the end, what I want is a bigger world for him. And I won’t lie—I want a bigger world too.

In our plan for his future, he must see the possibility for happiness in a mother-less/father-less time. Happily, we are young, he is young,  and there is opportunity enough to venture beyond the scope of home. Life stretches before us, inviting us to enter through doors not our own.  But if time should turn out to be short, why not make the most of it now? 

Last night I drove Cliff to a dance where he ignored my existence for a good part of it. About twenty minutes before the night was to end, I ambled over to see if he would consider a dance with his old mom. The closer I came, the farther into the corner he went. So I stood and ignored him right back. Before long I felt him wordlessly at my side, evidence of the push-pull the son feels toward the mother.

The DJ played Macklemore’s Thriftshop, a favorite of ours. We sang the chorus as we danced in circles, clinging to a singular moment of giddy freedom.

 

Surprise

One of the gifts that come with raising a child with Down syndrome is the element of surprise that arrives with it, like opening a box in which the contents drift out like helium-filled balloons. He surprised us on the day he came into the world—I had felt in my bones he was a boy, and though I had had an intuition of his unique genetic makeup somewhere in my seventh month, it had not yet risen to the surface of my awareness. Much later, once the shock had worn off and we had all settled into life in our small apartment on Leicester Street, I would occasionally recall month seven, in which I had had a dream about a baby boy lying on the rug, crying. In the dream I knelt on one side of the baby, a young woman knelt on the other, smiling. The woman was causing the baby distress somehow and I did nothing to stop her.  I had decided there wasn’t anything to the dream, dismissing it as typical of an anxious mother-to-be.  But I could not forget it.

One afternoon in Cliff’s infancy, as he began a physical therapy session with a visiting therapist, the dream came over me as déjà vu. It was all there, the details I hadn’t forgotten—the smiling therapist teaching me how to get Cliff to claim the muscles in his upper body, his crying in red-faced fury at the utter unfairness of it all. "Oh my God," I told her, "I dreamed this day months ago!" When I think back on it I can’t help but be amazed at the ways our minds work in tandem with the universe.  A second surprise.

This was all long ago, but through the years the surprises have continued. Some were welcome, like the day he finally took his first steps at the age of twenty-two and a half months, the December morning he spoke his lines on cue ("Ho,Ho,Ho!") in a third-grade production of  “Santa Claus is Coming to Town”; the way he sings at the top of his lungs when he's in the mood, with a vibrato flair on the final notes. Other surprises have been not as welcome. Despite a promising start, he was not able to learn to read or write, and he regressed in verbal expression, a heartbreaking development we still can't understand. 

Cliff had never been what one might call the “outdoorsy type,” often eschewing any suggestion of heading outside to play, so when my husband suggested a few years ago that we try taking him on a hike through the woods, I was dubious. I figured we’d get there, take a few steps on to the paths at Blue Hills, and turn around once Cliff tested out the unsteady surface of rocks and heaving tree roots.  What my husband and I experienced on that first hike was the obvious connection our son had to the wooded surround of tall trees, as if hearing the calming voice it held.  He had proved me wrong. Instead of protest, silence. Instead of retreat, a purposeful movement forward. Instead of fearful timidity, fearlessness.

The surprise comes each time we enter into the shadow of the trees, sunlight streaming in through the breaks. His self-talk, some of it loud and full of anxiety on the drive over, lessens as the natural surroundings enter his conscious mind. The hush is a blanket of silent snow, and our son’s resurgent energy appears. He switches the walking stick from left hand to right, the sound of birds above. The absence of his chatter makes it feel like a holy space, like church. Ken and I watch the transformation and sigh.

Nature's examples of regeneration and resilience are most alive in me when I feel the warmth of the sun, particularly in the colder months--Sun's ability to penetrate the car window as I drive around and Sun's gift of the warm spot on the floor where I step. I love that so much! I have to mention the sight of birds flying in formation in a boundless blue sky, the surprise of a bluebird or robin seeming to jump the brief distance in a close-knit copse of trees, one to the next. I am mesmerized, standing in awe when I see birds in flocks, uncountable and flying low in unison and up again, over and over in a great game of hide and seek among the high bushes. We are not so different, my son and I.

When we are not in the woods, busy going from car to store to home, sometimes I stop to point out what he doesn’t notice and we stand there watching clouds move, the wild turkeys walking in a fretful line across Elm Street, or breathing the scent of lilacs.

The balloons come with welcome regularity, drifting out of the open surprise box that is our life with Cliff.

*********************************************************************************
This is an alpha-poem I came up with, in which a word is spelled vertically on the page and each successive line begins with the next letter down. (It is NOT an acrostic!) I chose the word RESURGENT.  It reminds me of our hikes in the woods.

Responding to the

Essence of what

Surrounds me

Until the bells

Ring and the

Ground swells beneath my feet

Ever lifting me up into

Namaste, I bow

To thee.

If Only

"The tighter you try to squeeze your fists, the more it all oozes through your fingers."--Vincent Cortese, close family friend and father of three .

My most recent post, "Control", brought me back to a poem I wrote months ago and re-discovered while looking through my notebooks. I decided to include it here because it seems to fit thematically with ideas I wrote about in that essay. Originally, this was an exercise suggested by one of my writing group friends but I've forgotten the intention. It ended up being a tongue-in-cheek prose poem about weeds and, well, I don't need to tell you. Anyway, lately I'm observing more and more often how my children, my sisters' and brothers' children and a few of my friends' children, are making their own choices at still-tender ages without any input from their parents. It's a bit of a shock when it first happens, when a son or daughter says, "I'm getting a tattoo" or "I'm quitting school" or "I've signed up to join the Army."
There are days we wonder if we could have done anything differently so that the outcome might be more in line with our values and our dreams for their futures. Recently, Louie CK, a popular comedian, was quoted as saying, "I'm not raising children; I'm raising the grown-ups they're going to be someday." It's an idea worthy of remembering while our kids are still pliable. 
Ultimately, all we can do is our best in that endeavor. All we can do is what we are capable of doing. At some point, it's simply time to get out of the way, let them make their mistakes and recognize that once they are under the illusion they have reached adulthood, our instructions fly out the window, at least until that joyful day when they miraculously come back home to say, "You taught me well." While we're hanging around waiting for that to happen, it's all we can do to stay sane. There is the sudden recall from 1973 of the policeman shining his flashlight into the back seat as we scrambled to put on our clothes; of sitting in the back of the ninth grade science teacher's classroom smoking pot; of barely making it home after a night of bar hopping after college. We're on the other side of it now, wondering why they won't listen to us, especially once we've bared our souls, telling the stories in which we are the main characters just so we can prove we were young and stupid once too.
The bottom line is this: Control is mostly an illusion. The sooner you admit it, the better off you'll be. Just ask the weeds in your garden.

                                                             If Only

 

Far be it from me to criticize, but I must say,

If only the flowers in the garden had the same tenacity of weeds,

the unflagging determination of the chervil,

for example, with its maddening insistence

on poking through six layers of mulch,

or the haughty giant foxtail, brazen in its forced juxtaposition

with my brilliant- green lawn.

 

If only the flowers I planted would fight for their rightful places

in the curves of my beds, not politely stand aside,

as if to say “Welcome!” as the bull thistle lives up to its name.

Perhaps the purple dead nettle has not understood

the animosity of my spade when I punched

the soil with vehement objection

and flung its brother onto the pile, which I started just last week.

 

Even the thick black fabric tightly woven

and placed carefully around the mailbox post fails me,

inviting nature’s junk, incongruous as an old tire

sitting among the gladiolas.

I am considering waving the white flag of defeat,

retiring the garden tools having fought the good fight.

I am tired.

 

Besides, what beauty there is in wildness,

in the adorable chickweed bowing and scraping under

 

the yellow sweet clover.

And let us not forget the butter-yellow dandelion,

gathered in chubby little hands, presented

in loving gesture for placement in the Mason jar

in the middle of the kitchen table.

Control

The first recollection I have of falling in love with Control was the day I successfully played hooky from the sixth grade. I wish I could recall the specific circumstances under which I endeavored to do something so risky and, I might add, quite out of character. I was a rule follower for one thing, and for another, the nuns were capable of doling out severe punishments for much lesser transgressions. I can say with certainty I was attempting to avoid some dreaded unpleasantry.  

Most kids got into trouble for talking. Not me. I got into trouble for not talking. There’s a name for it now—selective mutism—but in the 60’s and early 70’s the term used to describe me was “shy”. It’s considered a legitimate disability these days, and teachers actually have to HELP you if you have it. Back then teachers only knew how to make it worse. My sister, Lisa, had it too, and we both recall the nuns getting so angry because they couldn’t Control us, couldn’t make us talk no matter what they threatened or how they badgered.

"Are you a baby? Huh? Do you wanna go down to the kindergarten where the babies are?"
"Do you know the answer to this question? Yes? Then stop nodding and answer, please. Well, you're not answering so you must not know it. Who can tell Celia what the answer is?"

I can’t ever remember wanting to go to school. The nuns could be bullies and I suspect, probably got together around the dinner table each night, thinking up ways to humiliate children. They delighted in catching students committing acts that would surely send them to hell. In fact, the following year, Sister Michaeline called me up in front of the class along with Donna Repaci, because we were guilty of hiking up our skirts in an effort to be more attractive to the boys.  Donna and I were told we would land ourselves in Hell and the fires would burn us up to our skirt length. Sister measured our bare legs with the yardstick so everyone could attach a horrifying visual to their imaginations. I got off relatively easy; I had only to unroll the band at the top of the skirt. Sister forgot about me because poor Donna, in a cruel twist, was accused of wearing lipstick and was sent crying to the bathroom to wash it off. I, at least, was able to skulk back to my seat. I remember Donna Repaci’s lips and I know for a fact she did not wear lipstick; her lips were dry and tended towards a white sort of dryness. In those days, white lipstick was the style, hence the nun’s assumption. The bottom line is this—most of the nuns at Corpus Christi School during my tenure there did not especially like children; what they did like was being in control of children.  

Miraculously, no one called home to find out why I hadn’t come to school. That day, despite the dark, damp, spider-webbed stairs of our bulkhead, I was safe from embarrassment and condemnation to hell. For six hours I was in control of what I did and thought about, what time I ate my bologna sandwich and Ring Dings. I had taken with me the flashlight from the junk drawer in the kitchen, and the Wuthering Heights book I had stashed in my bookbag to keep me company along with my imagination. I liked being in control of my own life. I hold those few hours of silent protest as the genesis of various transgressions to follow in high school, college and young adulthood, sins both venial and mortal. 

When I became a mother, Control became an extension of my anxious self, and the quiet mousiness with which I had lived my life BK (Before Kids) was considerably reduced. In my defense, Control meant my kids wouldn’t get hurt or die. There were times I followed Max’s school bus on its route to Maple Hill Elementary School, because I had heard the bus driver tended to floor it when she drove down the country road past the Buffalo farm. Olivia protested vehemently each time I walked her to friends’ doors so I could lock eyeballs with an actual adult before ninth and tenth grade sleepovers. Cliff bore the brunt of most of my obsession with Control; he was my only child for six years and needed protection every moment. Having Down syndrome meant a particularly specific kind of vulnerability. I must have appeared terribly pathetic to the preschool principal watching me peer through the rectangle of glass in the door, unable to return to my car to drive home unless I knew for absolute sure that my baby was not crying, scared and feeling abandoned by his mother; after a week of failing to reassure me, she offered me a classroom aide job in the room across the hall.

My kids have grown into adults, at least in the chronological sense, and I have had to let go of my companion more and more so as not to alienate them.  They sigh and shake their heads when I do things they wish I wouldn’t do. I bought a safety device with built-in GPS for Olivia to bring on her walks from her apartment to the UMass Boston campus. I felt less worried because all she has to do is press a button and the police/fire/ambulance will find her within minutes and save her from the unsavory figure in dark clothes following her home. In her own bid for control, I noticed it was still in its box when I stopped by her apartment recently. Max, who is deathly allergic to tree nuts, has had an almost cavalier attitude about wearing MedicAlert jewelry. He won’t do it. Luckily MedicAlert makes small silver bars for stringing to sneaker laces, and I’ve attached the bracelet he won’t wear to the strings of the nylon sling pack he carries around. Every six months, the expired EpiPen inside is switched out for a new one when he isn't looking.

I’m not completely over the control that Control has over me; I may never be, but it’s getting better. My goal is to land my helicopter for good by the year 2023. Thank goodness Cliff is still reasonably okay with my sneaky machinations. It’s easy to pull the wool over his eyes, though. I’m proud to say I recently left him overnight with Max when Ken and I attended a wedding several hours away. Naturally, I left a 15-point set of instructions, followed by several texts that started, “Just in case…”

It’s a step forward.

To my knowledge, none of my kids played hooky in our bulkhead, but they’ve gotten into other types of trouble through the years in spite of my vigilance. I’m glad for it, in retrospect. I have learned, albeit a bit late, that Control is only useful to a certain extent. I’m slowly coming to accept that all I am truly capable of is Influence, Guidance and Opinion; the rest is up to God and Fate.

Quirky II: What Came Next

Quirky II –What Came Next

(Note: It's helpful to read Quirky I to know what the heck this one's about. But whatever. I'm just so glad you're here!)
 

Cliff sat on the examining table in the windowless room, patiently listening to me talk. He was giggling to himself, offering an occasional nonsense word to no one in particular, but completely aware and curious. He is always in this world, even when you think he isn’t. Moments before, I had seen a look of surprise cross his face when Ben, the young man who interns in the Down syndrome Clinic at Mass General, came out to the waiting room to fetch us. Like Cliff, Ben has Down syndrome too. Cliff didn’t expect that.

"Cliff Taylor? Hi, I’m Ben. Come this way.”

“Have you ever sought help from professionals before?” Allie Schwartz, a lovely, dark-haired young doctor, sat at a small desk taking down any information I had not included on the intake form.

“Sure,” I replied. “We’ve spoken to his primary care doctors, his teachers, a psychiatrist, a psychologist, a neurologist, behavior specialists, and Dr. Crocker.”  The late Dr. Allen Crocker was a pioneer and expert on the subject of Down syndrome, well-loved and highly revered by everyone who knew him.

“And none of them was able to provide you with answers?” Dr. Schwartz spoke with a gentle curiosity, and listened intently to everything I said. We had waited two months for this appointment and now that we had finally arrived, the floodgates were about to burst open. I was either going to cry in front of this woman or start talking in that agitated, exasperated way that is never a good idea. If I had had any sort of reasonable explanation before, I would have saved myself the trip. But I hadn't had any sort of reasonable explanation, and we were all getting older by the second.

In this little room with Dr. Allie Schwartz listening, considering every word, and Helen, the social worker sitting to my left, I let it all fly. I was frustrated at the paucity of the kind of information I sought and particularly at the lack of connection among the agencies created to help families like mine. How many books have I read? How many articles? I’ve lost count of them all. I’ve lost count of the questions, the experts, the conversations, the appointments, the medications. For a long time, my husband and I simply accepted the fact that our child was not typical of people with DS. It didn’t matter to us. It doesn’t matter now. We love who he is. Everyone who meets him loves him; he’s sweet and funny, amiable and flirtatious. He's proud of the medals he's won at Special Olympics and knows instinctively that Grandma is lonely for Grandpa and needs a longer hug than usual. He has pet names for his brother and sister. He'll shyly extend his hand for a handshake when he meets someone new and is genuinely happy to meet you. He’s perfectly wonderful. Except when he isn’t.

I had brought Cliff here because I don’t understand him lately, and I have always prided myself on understanding everything about him. I don’t know why he is almost never quiet, why he makes so much noise, why I have to ask him to please use an inside voice every time we’re at the store, why he has vocal tics, what I’m not doing that I should be doing to ensure his happiness and well-being.

This is what I told Dr. Allie Schwartz that afternoon, in the windowless room with Cliff sitting on a table. I wasn’t looking to “fix” him; parents like my husband and me operate from a deep desire to make life better for our kids. In our estimation, Cliff’s behaviors had closed some doors over the last few years. We need to figure out how to throw those doors open again.

Dr. Schwartz understood all that, and made her recommendations. She wasn't sure what might be at the root of the difficulties I had listed. By the end of the visit I had at least come away with a plan of action. We would make appointments to see two more doctors: one would do a sleep study to rule out, or in, sleep apnea. The other was knowledgeable about Down syndrome and the difference between quirks (the word I’ve often used to describe Cliff’s shenanigans) and actual medical or psychiatric diagnoses.

After she left, we met with the nutritionist, who told me Cliff is nineteen pounds overweight. Ben returned with his iPad to give us a presentation on sleep apnea, complete with a photo his mom had taken of him wearing a C-pap mask as he slept. Helen the social worker gave me information on a place called Friendship Home, which was very exciting; If we were willing to travel an hour away, Cliff would have the opportunity to make a new set of friends and spend an occasional weekend with people his own age. Finally, we talked to a woman in charge of research, and I signed off on their use of the information collected as a result of Cliff’s visit. I’m completely on board if they can use it to help develop a clearer picture of individuals with Down syndrome.

In the days that followed our visit, friends and family inquired about the outcome, and each conversation reminded me of the tee shirts tourists bring back home from trips to faraway locales. The ones that say, “My mother/father/grandpa/grandma went to Tahiti and all I got was this lousy tee shirt.” They were expecting fancy cigars and chocolates, so they seemed slightly disappointed.

I understand their feelings completely. I went to the Down syndrome Clinic filled with unreasonable expectations. I realize that now, but despite the unanswered questions, I continue to be hopeful. I’m on the right road, traveling with people who are familiar with the terrain around here, and pointing out the signs I need to follow.

Like Ben said, "Come this way."

Maxwell James, Age 10

 

 He’s a grown man now,

Full of my instructions.

I taught him to understand

remorse, how brave we must be

To admit when we are wrong.

 

My neighbor said my son had

Teased hers, who was autistic and

Felt cruelty like anyone else.

He had been crying for an hour

At my son’s betrayal.

 

I asked him how it would feel

To watch a bully tease his own brother,

Older by six years but fragile and exposed

to the same kind of cruelty.

His face grew hot with red shame and contrition,

That day’s lesson of thou shalt not.

 

He told me he was sorry and begged me not to make him go.

I watched from the driveway as he slump-shouldered

His way slowly across the lawn, tear-streaked,

His superhero sneakers scuffing the dirt.

My heart seized in my chest as he raised his fist to knock.

 

He’s a grown man now,

Full of my instructions.

I raised him to remember compassion,

Feel the weight of his power

to choose.