shifting gears, changing course

Recently, when I was on an Alaskan cruise with my sister and my 81 year old mother, who suffers from Alzheimer’s, I met another octogenarian and her husband. I had joined her during the busy breakfast rush, since there were no open tables left, and we talked and talked until her husband arrived and then the three of us talked some more.

We made such a nice connection, joking, laughing, sharing witticisms and hugging, and we have kept in touch. The other day she wrote telling me more about herself. She sent me one of her poems and talked about her writing group. She told me that in the spring she and her husband were going to be great-grandparents for a second time, and she went on to say:

“as I write, I realize this may be a hard kind of news for you to read, and I almost deleted it. But then I decided I should leave it there because it is part of life, and you are forced to be a realist.”

It is true, having a severely disabled child changes the course of one’s life in ways unimaginable until it happens. I find myself drifting off and dreaming of what the future might bring, and what it won’t. Of course there’s what seems obvious; Calvin probably won’t be going to college, may never have a job and most likely won't be able to live independently. It’s not even clear if he will ever be able to speak any words or communicate in some other fashion. And though I continue to have high expectations that he will walk by himself, I was certain he would have learned by now. I realize that a serious relationship is improbable for him, in any event not one that might produce offspring. What I worry about more, however, is Calvin simply getting the essential human touch—particularly in my absence—that all of us need as children and as adults. And yes, I have accepted the truth—but not without great sorrow—that I will likely never know the joy of being a grandparent.

But, as my dear friend said—and I am glad she didn’t delete it—it is a part of life, and I must deal with the cards that I have been dealt. So I change course—shift gears—to a slower, meandering, hilly path where the steep grades are difficult, though at times I can coast. This path of mine is obscure at times and holds surprise, both delightful and frightening, around every curve. But it is my path, and I’ll follow it—hand and hand with Calvin—with curiosity and wonderment until we meet the end.

just like hummus

Before I had Calvin I really had no idea how much my world would revolve around poop.

As a tiny baby, when he’d leave a little gift in his diaper, I’d be so proud of him and rejoice in his accomplishment with enthusiastic "oohs" and "ahs." When he started eating solid food, though, things got a little hard for him, literally. Even though I was feeding him ample oatmeal and prunes and pushing the apple juice we still had to give him a suppository nearly every other day for over a year. His low muscle tone made it difficult to have a bowel movement unless he was good and lubed up.

At the gastroenterologist we were given a prescription for Miralax. Our goal was to get his stool to be the consistency of apple sauce. Yum. Thankfully, the medicine worked like a charm and I was back to congratulating him with a sweet “good boy, Calvin” every time he stooled.

Among other daily rituals, I log his bowel activity. No poops can mean that there might be an impending seizure or it could mean I need to give him less cheese or more yogurt. In my journal’s margins I include words like “smudge” or “smudge-plus” and whether his offering was a tiny, small, medium or large BM. Sometimes it’s a complete “blowout.”

Calvin’s bus driver seems quite amused, and perhaps nauseated, when I give his Ed-tech the morning’s details. “He had a huge poop this morning,” I say, “it was perfect– just like hummus.” When they bring him home the Ed-tech remarks, “he had another one, it was dark green and very seedy.” The bus driver is incredulous at the conversations we have nearly every day. But I can tell our enthusiasm for the subject is rubbing off on her since she congratulates us, sometimes with a high-five, every time she hears he has delivered us a package, although I’m not sure if she still eats applesauce or hummus.

rude awakening

In the pitch black of the morning I ran, half asleep, to Calvin. I’m not sure what I heard but I knew he was having a seizure. It was six o’clock.

Michael and I caressed him, told him we were right there and to breathe. His hands were dark and blue. This seizure, longer than usual, lasted at least three minutes from the moment I reached his crib-side—no way of knowing when, exactly, it started. I wondered if this one was going to stop, but it did. 

As Calvin lies in bed next to me now, thick mucous from a month’s old virus makes it nearly impossible for him to breathe through his nose. He sucks his thumb for a few seconds at a time before coming up for air. Having trouble falling back to sleep, he remains awake and slightly irritable, banging the back of his wrists against his forehead.

I change his diaper and give him his seizure medicine, slightly early, plus two acetaminophen suppositories in case he has a headache from either the seizure, the sinus congestion or both. Gurgling next to the bed is the humidifier, misting out hot beads of moisture in a futile attempt to ease Calvin’s breathing.

The convulsions twist and tangle his innards. Calvin’s gut creaks and moans while he writhes to release the kinks. But he seems hungry so I spoon feed him the mixture of yogurt, oil and mashed strawberries that Michael has prepared. He takes it willingly with labored breathing between each bite. I think he’s going to be okay.

drug downside

Imagine if your infant or toddler had to deal with the following drug side effects, in this case from Clobazam, the benzodiazepine that Calvin has to take:

Drowsiness, dizziness, tiredness, fatigue, loss of coordination, constipation, loss of appetite, muscle weakness, dry mouth, tremor, weight gain, restlessness, rapid/pounding/irregular heartbeat, changes in vision, slurred speech, confusion, depression, irritability, behavioral changes, rash, itching, swelling, severe dizziness, trouble breathing.

Physical and psychological dependence are known to occur in persons taking benzodiazepines.

Anterograde amnesia (inability to remember new information) is known to occur after administration of benzodiazepines.

Contra-Indications include hypersensitivity to clobazam, severe muscle weakness (myasthenia gravis) and narrow-angle glaucoma.

Withdrawal symptoms have been observed after abrupt discontinuation of benzodiazepines. These include seizures, irritability, nervousness, insomnia, agitation, tremors, diarrhea, abdominal cramps, vomiting and mental impairment.

Loss of part or all of the anticonvulsant effectiveness of clobazam has been described in patients who have been receiving the drug for some time.

Excitement and other paradoxical reactions can result from the use of benzodiazepines.

In patients for whom prolonged therapy with clobazam is indicated, blood counts and liver function should be monitored periodically.

These are just a few reasons why we need to find a cure.

orion

At night when I hear Calvin rustle I go to him. I want to be sure he is not having a seizure and that he is breathing well. If he’s awake he rolls onto his back and looks up into the darkness expectantly, aware of my presence. I know this means he wants a drink of water. I gently lift his head and give him the bottle that I keep at his bedside. The medicine makes him thirsty. When he’s had enough he rolls to his side and falls back into a slumber as he softly repeats “uh-uh, uh-uh."

In the darkness I fill up his bottle and I can see out the bathroom window. On clear, crisp nights, like last night, Orion appears in the sky. He looks down upon our house majestically, with his taught belt and steely sword, his celestial body strong and resplendent. Orion is the hunter. I imagine him watching over Calvin and slaughtering the beasts we know as seizures. Orion’s battle is not won, but every night when I see his gleaming features in our ebony sky my hope is renewed.

old habits die hard

What they say is true; old habits die hard. Over the years Calvin has developed a myriad of habits, bad ones, irritating ones and a few innocuous ones.

Currently, his worst compulsion is eye poking. We think it is a self-stimulating mannerism. He pokes both eyes— though thankfully not his corneas—whenever he is idle, such as sitting in the high chair while we prepare his meals, in the car seat or the stroller. He pokes his left eye with his middle finger while sucking his thumb and he pokes his right eye with his index finger. If he can manage it, and try as he may, he will poke both at once. We fear he will damage his eyes or detach a retina, so we have harmless methods to prevent this habit as much as possible in his waking hours. But at night when there is no defense, we know where his fingers will go—nestled right up against his eyeballs. Soon we'll be putting him into goggles.

Calvin’s habits take months, sometimes years, to break. He used to bang his hands and head on every window, which was unnerving because our house has some very old panes, but we successfully curbed this behavior after a couple of years of trying. He still bites pretty much anything he can get his hands on so we are still working on that one. There was a time—during which we think he was experiencing gastrointestinal stress—when he pulled his hair out at night, in clumps, and when he pulled my hair out in clumps, too.

Basically, curbing any of Calvin's habits has very simply required us telling him—over and over and over—a bazillion times, like a broken record, not to do it: "don't poke your eye, Calvin," "put your hand down, Calvin," "sit down in the bath, Calvin," "don't bite that, Calvin." It's a very good thing that I have learned to embrace tedium, because sometimes it actually works.

complicated child

I’ve got a complicated child. In the first few years of Calvin’s life he was diagnosed with ventriculomegaly, global hypotonia, cerebral palsy, hypothyroidism, ocular and cerebral visual impairments, nystagmus, slow gastric emptying and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS.) He’s been respirated, tube-fed, x-rayed, sonogrammed, CT-scanned, MR-imaged and Nuclear Medicine-imaged. He’s had a late circumcision and one eye surgery with a history of urinary tract infections, pneumonia and ear infections, plus he’s been tested genetically and for kidney stones, acidosis and urinary reflux. Calvin wears glasses on his face, orthotics on his feet and diapers on his bum.

All of these experiences have been difficult to deal with. I saw my beautiful infant, so feeble, continue to lag behind as the enormous developmental gap became more and more vast with each year. At times, in the early days, I felt I would barely survive the emotions and the rash of complications we faced.

Epilepsy, however, has dwarfed all of these hurdles combined. Calvin’s seizures have never been controlled and are constantly changing. Numerous medicines have failed him. Two rigorous diets didn’t stop the seizures. Instead, they clustered and burned out of control. Ambulances have carried him away and doctors have intubated him without anesthesia as he screamed in agony. Numerous EEGs have exposed little and blood has been drawn countless, painful times. Drugs inhibit his vision, his strength, his coordination, his enthusiasm, his development and his well being. Seizures continue to rack his brain, impede his development and risk his life.

But somehow, after each new battle, Calvin, Michael and I manage to pick ourselves up and dust ourselves off. Out of necessity and desire we try to lead a simple life. The three of us focus on what we have and how fortunate we are and remain hopeful that Calvin will benefit, one day, from a cure. And if he does, he’ll still be light-years behind all the rest, but at least, for my complicated child, the seizures will be in his wake and infinite possibilities will be waiting ahead.

photo by Michael Kolster