Connor Witte was born with all of his fingers and toes. He was the first grandson and he wasn’t an easy baby. He took awhile to get the hang of nursing and he had a hard time focusing on faces that leaned into him with goo-goos and tickling. He was a snuggler, though, and he could curl his body until it conformed to the shape of whomever held him; tall, short, thick or thin. For all of us, it was love at first sight.

Winter - 2003

My grandson has the most beautiful translucent skin with cat green eyes and hair the color of apricots. He is six years old now and weighs 37 pounds. Perhaps you do not know how small that is. He is the size of a small three-year old.

In spite of speech therapy he cannot talk; those centers of his brain have been damaged, but he can gesture and he can make sounds. When he is tired of following his mother while she vacuums or when it is too cold or wet to go outside and play, he goes into the kitchen and hums.

He hums at the refrigerator, mmmmm-mmmmm. He hums because he knows in the very cells of his being that food is kept there. His father and mother (when they cannot stand the humming) feed him mounds of crushed ice in a bowl because all the humming in the world will not make the clock pass into breakfast, lunch or dinnertime.

We prayed for an end to the seizures. We prayed to every kind of God and we prayed for years. We would do anything to make the seizures stop. Anything. Then Children’s Hospital came up with a solution in the form of a low calorie, high fat, no sugar, no protein, no carbohydrate food plan. My husband calls it the no-food plan. The chemistry of this plan is simple but the execution of it is hard.

Somewhere it was observed that people who are starving do not have seizures. Or, at the very least, they do not have as many. This discovery is the answer to years of prayer. A miracle and a curse.

It is called the Ketogenic Diet.

We force him to follow this diet because this precious child once had forty seizures a day: bruises, a bitten tongue, broken bones, brain damage. Forty seizures a day adds up to 280 a week and 1,200 a month. You can do the yearly math, if you are so inclined. Each and every seizure is a chance at death. A better chance than the odds at Vegas. Or Lotto. Or beating my husband at cribbage.

My grandson is resistant to medication. What a stupid word: resistant. As if there were choice on his part. As if we hadn’t tried everything possible to avoid this solution to his seizures. So Connor now follows the cure of last resort: the Ketogenic Diet. Three times a day he eats two pieces of bacon, eleven blueberries, two teaspoons of oil, two of butter, and two of mayonnaise. For dessert he has one tablespoon of thick cream on a quarter of a cup of sugarless gelatin. This is what he eats breakfast, lunch, and dinner-- seven days a week, 365 days a year. That is his food during school and during summer vacation. At Thanksgiving and at Christmas. At the Puyallup Fair and on his birthday.

Aside from the diet, whenever he feels hunger (and he always seems to feel it) we can feed him ice.

At my house (I am his grandmother) I let him choose which bowl will hold the ice. He likes the one with flowers and not the plain white one with a blue stripe. I keep all manner of spoons – some with heavy monograms and other with bright plastic handles. I buy them so he can choose which to use to bring juicy coldness into his rosebud mouth. He spoons ice the way other children spoon ice cream or pudding. If he can’t pick chocolate, strawberry or vanilla, he ought to be able to pick something, dammit. That is what I tell my husband. Sweet Jesus, this little boy ought to be able to pick something!

Everything about him is small. His elbows and knees are honed to perfect sharpness. His hip bones do not keep Extra Lean Jeans from slipping. His shoulder blades fold beside a backbone like something from Africa or Auschwitz or anywhere but America. Strangers at school and other places (Fourth of July parades and field trips to the zoo or the post office - you would be amazed at the persistence of well-meaning busybodies) try to slip him candy, cookies, bits of sandwich. But we are on alert and feed him ice. Crushed ice.

We are not monsters.

Mostly, Connor eats alone because no one can stand to eat a regular meal with him. At school, he stays in the room with an aide while the other Special Ed children go to lunch. At home, his mother has green tea and sits at the table with him while he sips water and chews orange sugarless gelatin for breakfast and for dinner. She eats her meals in the kitchen after he has gone to school or outside to play. Connor’s father (my son) eats in the bedroom or in the car on the way to work and he works late so that my grandson will be asleep when he comes home.

Sometimes I babysit while they go to a restaurant. They go away to remember why they love each other. They try to laugh and to eat without guilt. They remind themselves they are human.

This is my beloved grandson’s life: the Ketogenic Diet, humming at the refrigerator, and crushed ice to fill his stomach. He will be seven in July. Did I mention he is the size of a three year old?

Fall - 2010

Half a decade has gone by and Connor is fourteen years old. He is a late bloomer but puberty will happen. He is now in high school and rides the Special Ed bus. He helps push the wheelchairs of his classmates into the building. He is almost my height (5 feet, 2 inches) and weighs 87 pounds. Nowhere on his body is there fat. He has a lump in his chest to hold the battery of a vagus nerve stimulator (VNS). It is about the size of a pack of cigarettes. Not the soft pack but the kind that comes in a box with sharp edges and a flip top. When the battery runs down he has to get a new one implanted. That has happened once already. My son and daughter-in-law knew it was time for the change because Connor’s seizures started up again. Twenty-five a day. Less than before but still hard. Still dangerous. And he hit himself. Over and over. It was a side effect of the seizure medication.

The horror of the Ketogenic Diet lasted three years. The hitting lasted another year. Finally, a new medication was approved and in that time, Connor grew enough to have the surgery for the VNS. We try to put those dark years behind us but sometimes the hitting starts up again. Sometimes the seizures flick on and off like a light bulb about to go bad. Church helped distract us. Family and friends did, too. And time. That was the true gift. Time to let the sharpest of memories fade.

Connor no longer goes to the refrigerator and hums. He goes to the cupboard and brings his mother a package of microwave popcorn. Or Honey Nut Cheerios. He eats dinner at the table with his parents and brothers and sister. He carefully spoons spaghetti and green salad and apple cobbler into his mouth. He seldom spills.

He will never be normal. He cannot draw a circle or say the alphabet or stay on the oval track enough to run a race at the Special Olympics. But he can shoot baskets. He can help with the laundry. He knows fifty words to sign (drink, more, please) or to say (papa, mama, sister, and brother) and his family and teachers love him. He can walk, climb stairs, and is completely toilet trained. He can hug and laugh. He is an acolyte at church. He loves to hear the music soar and he loves to wear the special robe. He helps light the candles and we are all uplifted by the glee on his face.

We try to forget the bad years. They are not branded or tattooed on our flesh but the hurt is there, deep in our hearts. There are more years to come. Years when the battery runs down and it takes awhile to be scheduled for a new one. Years when the medication won’t work because he has grown or because of hormones or because of some plan that is not of our making. Some days my grandson has made us worse than we ever wanted. And some days he has made us better than we ever thought possible.

I kept the special spoons and bowls from before and when my grandson comes to visit, Connor has soup in them. He still prefers the orange spoon and the bowl with the flowers. And he still, on occasion, hums. When he is riding in my car, he points to the console. Mmmmmmmm-mmmmmm. I keep candy there; the soft taffy mints are his favorite. On our way to the store or to the gym or to the water park, he hums, and it is my pleasure to let him have what he desires.

Can you imagine how much we love him?