A Day in a Life of Handicapped Child

The same disability that eases one worry creates another.

By Carolyn Murray

I wake my son at 5 a.m. just as the neurologist's assistant instructed. I carry him to the living room where his blanket takes center stage and lay him down to watch his favorite from the "Baby Einstein" line of videotapes. He prefers Van Gogh. He points to it when given a choice over and over again. I think the big blue Billeee Goat puppet really turns him on.

It's interesting that Van Gogh is his favorite. We have the whole collection: Einstein, Mozart, Bach, Doolittle, and of course, Van Gogh. He likes them all because they're slow moving with huge images and classical music performed for a baby's tastes. His selection, though, is invariably the artist.

Daniel is three years old and has a number of serious disabilities, including being visually impaired. I think he has a bit of the rebel in him by insisting on viewing art.

He watches the video, clapping and making his "happy sounds"--lots of yelps and hollers--and then lets me know it is time to eat by making his familiar "I don't want this anymore, I'm ready for something else" noise. It's a kind of a cross between a grunt and a whine, and it's persistent and effective. I lift him up and onto my lap for his bottle and his anti-seizure medications.

While he's in my arms I watch him drink. He still takes bottles for the majority of his nutrition and calories, but he can drink from a glass--and loves to. He is a gorgeous boy. Big brown eyes, soft full cheeks, long tapering fingers and a smile that lets me know that his life here is not so bad for him as some might think. Gulping down his morning milk is a well-loved activity for him.

Before long it's time to dress him and get breakfast for his six-year-old sister. She knows that her brother has disabilities. She mourns not having someone who can run and play with her, or that she can have a satisfying argument with. But she loves him and takes pleasure in him nonetheless. This morning she wants Cheerios. She also wants to watch cartoons and not a "baby video". It's seven a.m. and we're in full swing as usual.

I change Daniel's diaper; put a clean undershirt, pants and turtleneck on him. I wrap the bandana around his neck that will collect his steady stream of slobber and any spit-up that he might have. I pack about ten more in his diaper bag along with a clean shirt.

He's smiling, and his legs are kicking as usual. Today I can leave the braces off of his ankles and feet because he'll be expected to sleep during the test and he needs to be comfortable. He's having another EEG--electroencephalogram--to measure the electrical activity of his brain. He's had several already in his three short years on the planet. I woke him early to make sure he's sleep deprived, a requirement for having the test. The brain tends to have more seizures when asleep than when awake, and it's Daniel's seizures that we're concerned with.

He's been having more than usual, and we've changed medications twice over the past month. His current drug seems to be helping more. Thank God. When he goes into a grand mal seizure it's like watching him die. He turns blue, rolls his eyes upward, twitches and doesn't respond to us. It's not a pleasant experience. Most moms of three-year-old boys have to worry that they'll perform an experiment with the Drain-O, or climb onto the roof from their upstairs bedroom window for a glimpse of the nighttime stars. I don't have those anxieties.

Instead, I have an underlying fear of finding him still and lifeless some morning in his safe, protective crib. Life's little trade-offs, I suppose. He doesn't walk, so he can't climb; but the same disability that eases one worry creates another, even scarier one. The only protection we have from it is a bottle of pills and the hope that we'll always know when he's getting into trouble.

Oh, that and the gift of intuition that seems to be sharpening lately. I dreamt recently of Daniel struggling to sit up in a grocery cart. He kept slipping down and couldn't readjust himself. I was worried he'd suffocate. That was my dream. The reality the next morning was that a classmate of Daniel's suffocated during the night in his new toddler bed. He'd gotten stuck between the mattress and the bedrail. I only pray that my intuition is in high gear if that ever happens to Daniel.

By 8:45 we're in the van and heading for St. John's Hospital 40 miles away. My dad is with me. I like to have another adult handy in case Daniel seizes when we're on the road. It has happened a few times on this very highway on the way to this very hospital. You can't be too safe.

I'm in the backseat keeping him awake. I sing to him and play a musical toy whenever his eyes start to glaze over. So far so good. He's not fussing and he's awake but mellow. I pray he'll sleep for the EEG.

We arrive, check-in, and wait for our name to be called. Soon we're led to a room with a television, a bed, and a machine with multi-colored wires dangling from it. The tech comes in and introduces herself. She's pleasant. I'm anxious. She uses glue to secure each of the 24 leads to his head. I'm thankful that I had his hair cut very short on our last trip to SuperCuts. He lies next to me on the bed. Every muscle in my body is tense. I try to relax, but I know how important it is that he sleep and I'm afraid that he won't. He has pretty much eliminated naps as a part of his daily regimen, opting instead to conk out at seven o'clock each evening. I'm also concerned that he'll start putting up a fuss at having this woman messing with his head. First she scrubs a little, then dabs the glue, finally she places the metal piece on his head. Over and over again. He is remarkably patient, though. Taking it like a little man.

Everything is in place. I ask my dad to pass me the bottle that I prepared for Daniel before leaving home. The tech turns out the light and it's pitch dark in the windowless room. Dad slips out for coffee. It's just me and my little guy lying close together in the laboratory bed.

I put the bottle in his mouth and he drinks. He empties it in no time and then quietly says "da da da da da" in the sweetest way possible. I stiffen, though, afraid that he will gain momentum and volume. Sometimes a bottle gives him a strong second wind.

I am still. So is Daniel. I pray "please, dear God, help him sleep. Oh, angels of sleep, visit my son." I say the Lord's Prayer and Hail Mary in my mind. He remains motionless. He is asleep!

Trouble. I need to move my arm. It's under his head in a position that's causing me discomfort. I gently budge after about fifteen minutes of lying still. He grunts and I freeze.

An hour passes and I must move my arm! Every muscle is burning, and my back isn't very comfortable either. I again gingerly attempt to move and he remains quiet. I slide my arm out and relax. The tech comes back into the room and says it's time to wake him for the last part of the test. Oh well. At least I can stretch my entire body before rigor mortis sets in.

Afterwards, when most of the glue has been removed from his head and we're eating lunch at an all-you-can eat seafood buffet, I am thankful. Today went well. We won't know the results until the following week, but I'm not worried. I'm just glad that the EEG went off without a hitch and that my boy can now sleep whenever he wants to again. The pressure is off. For now.

Carolyn Murray is the single mother of two young children, one with multiple disabilities.