kids and dogs

Every so often I encounter certain canine enthusiasts who tell me that having a dog is like having a little kid. All I can think is that they must not have kids. We have both, our son Calvin and Rudy the dog, so I can honestly say that having a dog is not much like having a child, especially one like Calvin.

On weekends, when Michael, Calvin and I go to the coffee shop to leisurely sip our lattes, we prefer not tie Calvin up to the tree outside right next to the slimy bowl of water. We'd rather have him snuggle inside with us. And although it would be damn convenient, I don’t leave Calvin at home all day by himself, and while shopping for groceries, I opt not to leave him in the car, even if the windows are rolled down. Sometimes I dream about how easy it would be just to scoop out some kibbles and throw Calvin a bone, but you'll never find me succumb to that. And although it might be advantageous—particularly on a tight schedule—to scrub Calvin down every few months, we give him a warm bath each night especially since his hair doesn’t clog the drain.

Rudy the dog, on the other hand, doesn’t seem to mind avoiding the bath, and is very good at telling me when he has to pee or poop. When we let Rudy outside to do his business we don’t bother bundling him up in a down coat, scarf, hat, mittens, wool socks and snow boots, because that’s a major pain in the neck. And with the amount of laundry we do in our house it’s a blessing none of it is Rudy’s because he likes to roll in crap. Rudy is a good sport, though. He doesn’t mind sleeping on the floor or eating the same food ad nauseam, but he really doesn’t like it when I brush his teeth.

We’re all lucky that we don’t have to give Rudy medicine ten times a day, like we do for Calvin, and he hardly ever gets sick. If he does—and it’s usually because he ate something unspeakable when we weren’t looking—we just wipe it up, he’s fine, and we go on with our business. One of the best things about Rudy is that we don’t have to change his stinky diapers. And the best things about Calvin are his smiles, his giggles and his hugs.

Nope, kids aren't much like dogs but they're both pretty great to have at home, to play with and to love.

birthday bash blues

Everything changed the moment we found out that there was something terribly wrong with our unborn child’s brain. At that point we decided we wanted to find out everything about him so we learned that he was a boy and we named him Calvin, the only name we ever truly loved.

Two good friends, wives of Michael’s colleagues at the college, were due to have their babies close to Calvin’s original due date. Our three boys would go to the college day care, have the same friends and grow up together as neighbors. Instead, complications developed and Calvin was born six weeks early with little to no fanfare amidst much worry and uncertainty.

Our friends’ sons were born a month and a half later in our local hospital. Calvin and I had been boarding in that very labor and delivery ward for several weeks while he perfected nursing. One boy was born just down the hall from our room and the other in the room next door. We all went home with our infant sons within days of each other.

Months passed but Calvin never entered the daycare with the two boys, nor did he become their friend, nor any child’s friend for that matter.

I remember what must have been their second birthday party. Several gleeful children from the college daycare were there with their parents. Shiny Mylar balloons floated aimlessly around the room. The table was adorned with pretty cupcakes and colorful sippy-cups filled with juice. Cute gift bags stuffed with sundries and toys were strewn onto the floor and, excitedly, the children rummaged through the goodies. In my arms, and while I stood off to the side, Calvin cried and cried. The other children were scampering around the room in cone-shaped hats and blowing out candles, some eating their cake with forks. My child couldn’t even sit by himself in a chair, couldn’t crawl, couldn’t hold a fork and didn’t seem to be aware of the things going on around him, though maybe his crying was in protest of the unfamiliar scene. In any case, there was no way of knowing, but he simply couldn’t deal, and as a result, neither could I. I wanted to dissolve into the wallpaper or hide behind the plants. Instead, I retreated upstairs so as not to cause a ruckus and in an effort to calm Calvin. Upstairs, I could hear the animated shrieks and happy commotion below. I hoped that the hubbub was loud enough so that the guests couldn’t hear my sobs.

A few moments later my friend, the hostess, found me and embraced me as I disintegrated. She didn’t let go until I did. I knew she could have no idea of the torment I was feeling but I could see the concern and worry in her face, which told me she might have known, to some extent, why. She helped us pack our things and quietly escorted us out, leaving the merrymaking behind.

My boy Calvin is oblivious to the meaning or tradition of birthdays. When he used to be able to eat sugar we'd make him a cupcake, stick candles in it and stand by for damage control. And though I always appreciate the occasional invitation, I usually take a pass on birthday parties, but perhaps someday that will change.

adaptation

A good friend who I haven’t spoken with for a long time wrote to me recently. I think of him often and wonder what life is bringing his way. He mentioned how he wanted to talk with me but that, in reading my blog, he felt as if his problems were petty compared to what I was facing on a daily basis. I'm not sure.

If I’ve learned one thing since Calvin’s birth it’s that we, as humans, are incredibly adaptive creatures. I remember, before Calvin was born, driving with Michael along a winding road on the Bolinas Ridge just north of San Francisco. The narrow road snaked through densely wooded glens broken by pristine, wide, open seascapes and rolling, golden hills punctuated occasionally by a gnarled oak tree. While listening to the radio, we were not only captivated by the scenic beauty, but by a story about happiness. The story described a study that had revealed findings about human adaptation. It explained how—even in grave circumstances such as incarceration or physical debilitation—after an initial adjustment phase, individuals ranked their level of happiness on par with a control group. It seems it’s well within our ability to adapt and be happy amidst less than ideal circumstances.

I will say that life with Calvin has been grave at times. It is true that grief has choked me, frustration has frazzled my nerves, nights are often sleepless and worry abrades my spirit. But, so has raising Calvin been the most uplifting and rewarding adventure of my life. To love this child—who rarely looks me in the face, who cannot express his feelings in words, whose dreams I’ll never know—and to have this child love me back, unconditionally, is to feel an emotion impossible to adequately describe, but one that brings me joy and happiness beyond measure. I believe that my life, especially since Calvin, is a reflection of nature in its ability to adapt and find ultimate balance—a path not unlike the meandering road with its dark, obscure hollows juxtaposed with bright expansive heights.

So, too, has the strain of raising Calvin heightened my sensitivity to the burden of others. I imagine that floating down a raging river through coarse, magnificent rapids might feel treacherous to some, while for others, the tempered water rippling at the eddy’s edge might prove as terrifying. Both realities are true. Equally, no malady is petty or shameful—none to be belittled by another—and no accomplishment is unworthy of praise. As humans, we all suffer hardships and we all celebrate triumphs, both large and small alike, and through this constant ebb and flow between despair and rapture—and because of the compassion and empathy of others—we adapt, we find balance, we persevere.

shake’s malts

One of the best things in the world is a good chocolate malt, as long as it’s a black and white made with hard-pack vanilla ice cream—never soft serve—chocolate syrup, extra malt powder and very thick, with little to no milk.

Serendipitously, when Calvin was just over two months old, his pediatrician prescribed a diet of daily chocolate malts—for me! I acquiesced to this harsh regimen without protest.

Born six weeks prematurely, and with significant neurological problems, Calvin had a rough start spending his first two months in the hospital. While in the NICU, because of immature lung development, Calvin needed the help of a respirator to breathe. He also had dangerous tachycardia (rapid heart rate) and rapid respiration. But the thing that kept us imprisoned in the hospital for nearly eight weeks was his inability to nurse efficiently enough to thrive.

Weighing in at just four pounds fifteen ounces at birth, he gained little over the first several months and, by the time he was eight months old, he weighed just thirteen pounds. He didn’t even register on the growth chart. The daily malts that the pediatrician prescribed were meant to increase the fat in my breast milk so that Calvin would put on some extra weight. Happily, we both did, and to be honest, I've never gotten sick of Shake’s malts.

photo by Michael Kolster

too good to be true

Yesterday at 7:00 a.m. we packed up the car and embarked on the two and a half hour day trip to see Calvin’s neuro-ophthalmologist in Boston. Calvin spent the first part of the trip screaming and “singing”, which sounds more like a soprano on steroids than anything. When he sings he is so loud we can barely hear ourselves think, and it is nearly impossible to get him to stop. We had a long ride ahead of us.

At one point I noticed a stippling of tiny red dots on Calvin's chin and cheeks—a telltale sign of a virus—accompanied by a runny nose, a patchy red complexion and what I call “stink breath" which is the pungent breath he often has prior to a seizure.

We had forgotten to pack Calvin’s stroller so Michael carried him and held him for the various ophthalmologic tests, during most of which Calvin laughed hysterically—a little too hysterically for my comfort. The first doctor witnessed what I had recently begun noticing which was Calvin’s upward right gaze in tandem with a pronounced jerk-nystagmus. He asked us if Calvin was having absence seizures. I explained that, because of Calvin’s nystagmus, it was difficult to tell and that what we really needed to do was another EEG.

Save for Calvin’s laughing the visit was pretty routine and after two hours we were free to go. Several times on the drive home Calvin’s eyes momentarily fluttered and blinked, once or twice his head or shoulders twitched and few more times he stared up to the right again, his eyes roving and jerking. These behaviors made me very suspicious and fearful of—if not seizures in and of themselves—an impending seizure.

Upon arrival home Calvin wouldn't nap so I put his harness on and we practiced walking. He bounded up the stairs with the agility of Superkid, scooted down them just as well and walked with incredible balance. This kind of stellar performance used to be a bad omen, like the calm before a storm. I remember saying frequently “Calvin’s walking and balance are better than ever” only to witness a bad seizure later that night. His enhanced capabilities were often too good to be true and became more of a foreshadowing than a cause for celebration.

So, just before Calvin’s bath last night, I wrote in my journal about the harbingers of the day and ended with the words “suspect seizure tonight.” About five minutes later my suspicions were confirmed.

Calvin was headed up the stairs for a bath. At the bottom step, he stood erect and still while his face went blank. At that moment I knew something was wrong, so I scooped him up in my arms as he let out a shrill cry. I felt his muscles clench then his body froze rigid like a plank. As I carried Calvin to the couch I yelled for Michael who came immediately. There we helplessly watched him—like countless times before—for two, blue minutes. It had only been ten days since his last seizure.

legally blind times five

My six year old son is legally blind—times five—and he suffers both ocular and cerebral visual impairments besides the epilepsy and other developmental delays.

As a preemie Calvin’s eyes appeared large and inky like a shark’s. It was clear that he really wasn’t seeing us until one day, when he was about four months old, I was cradling him in my arms as he was crying. That moment—looking down at him—was the first time he locked gaze with me as tears welled up and cascaded down our cheeks.

My husband, who is a professional photographer, had a theory. While crying, Calvin squinted which might, he said, produce the effect of a small aperture bringing objects into focus. He also thought it possible that Calvin’s tears acted as lenses, and it was his opinion that—under those circumstances—Calvin was seeing me.

Hastily, we took him to an ophthalmologist. Over the next several months at each of three checkups we expressed our great concern about Calvin’s vision and the impact that might have on his development. The doctor responded to us, each time with a hideous bedside manner, saying that while Calvin’s vision was poor it wasn’t bad enough to warrant glasses. We stopped seeing that doc.

Soon after, a neuro-ophthalmologist in Boston informed us that Calvin’s acuity was 20/1000 (legally blind is considered to be 20/200) and that he likely had a cerebral impairment. He also suffered nystagmus, which is the constant jerking and roving movement of his eyes, as well as intermittent esotropic strabismus, or crossed eyes. Glasses were prescribed immediately. Calvin was just eleven months old.

What remains unclear about Calvin’s vision is not his acuity but, because of his cerebral visual impairment, the way his brain interprets the images he sees. At six and a half he is just beginning to show an awareness for obstacles on the ground that he must step over or around. His depth perception never developed and he is in constant danger of running into corners, misjudging distances and falling over our sleeping dog. The antiepileptic drugs exacerbate the problem. So, I hold on tightly to his harness in case he falls, and we practice walking around the house in unison most of the day.

What is clear is that Calvin's vision, albeit still poor, is improving. A successful eye surgery to correct his esotropia has helped a lot, and for that we are very thankful. Now if he would just stop poking his eyes, but that is another story.

if it were mine

When I was in high school I worked as a lifeguard at several community pools. It was at one of those pools when I first encountered a child with Down syndrome.

I don’t remember his name, and his age was unclear, but I suppose he was a teenager. He'd appear often on the pool deck, drop his towel, whip off his shirt and take a running dive—more like a painful belly-flop—into the water. He’d swim flat-out with windmill arms for about ten lengths before hopping out, beet red. Then he’d dry off, don his shirt and exit as swiftly as he had arrived. I have thought of him often over the years wondering what his parents were like, who his friends were and what he liked to do besides swim.

Throughout my college years I continued to meet a handful of other youths and adults with Down syndrome, mostly at grocery stores, bagging my food items or retrieving carts with what seemed to me great care and pride. I happily engaged with them if they showed any interested.

And while watching the film Fried Green Tomatoes nearly twenty years ago I was quite moved during a particular scene. In it, Jessica Tandy plays Ninny Threadgoode, an old woman living in a nursing home who, at one point wearing a bright smile, talks about her child in a soft southern drawl:

"When he was born, the doctor said it would be best if I didn't see him. He said his mind wouldn't develop past the age of five, and I should put him in an institution, because the burden of raisin' a child like that would be too great."

She went on to say:

"I smiled at him and I asked for the baby. Why, from the minute he was born, Albert was the joy of my life. The Lord's greatest gift. I don't believe there was a purer soul on this earth. I had him with me til' he was 30. Then he went to sleep and he didn't wake up. Sometimes I can't wait to get to Heaven to see him again."

That scene left an enduring impression on me though it would be years before I had a child of my own.

My observations and encounters—and subsequently the film scene—came together into a kind of mosaic that compelled me to ask myself, even as a young person, “what if I had a child with Down syndrome?” I wondered if I might become depressed, fall into a downward spiral and plunge deep into a black despair. Might I run away or kill myself? My answer was always a resounding “no.”

No, I wouldn't. I'd remain the hopelessly optimistic person I have always been. I would prove to be a wonderful mother to this child. He would become the light of my life and I would help him realize his full potential. I would love him for all of his features unique to him.

Thinking back, I am thankful that these questions occurred to me. I have no idea whether my peers pondered these same kind of realities. Calvin doesn't have Down syndrome but was I having some sort of premonition about him? I don’t think so. My query might be more adequately explained by the fact that I have always thought it paramount to consider the life of another and wonder how it would be if it were mine.