Day Twelve

When Beth realised Tom was not coming to their bedroom, she decided to get up. She had always thought they could sort out whatever differences they would ever have. They had supported each other all the way through school and agreed that the only way to overcome problems and disagreements was to talk about them, not close down. But neither of them had ever seriously considered what would happen if their first child was born with problems. Julie certainly had her problems: congenital heart disease that extensive surgery had only partially corrected, diabetes and epilepsy on top of severe and irreversible brain damage.

Beth wandered into Julie’s room to check on her. One day she would come in and Julie would be gone. Everyone had told her that. When her mother had her stroke, the same thing had been said and it happened: one morning she went to the nursing home to see her and she was gone. The young nurse who told her had cried too.

Tom had been so good to her during her mother’s illness. He would do the shopping and he hired a cleaner so she could focus on being with her mother. Alfie, her father, had been a cantankerous old bugger of course. He would huff and puff at his wife’s side as if he couldn’t wait for her to die so he could get back to his sports page and tea.

What might have helped Beth was a cup of cocoa but she didn’t want to go into the kitchen and risk waking Tom. She didn’t want him to try to explain himself again or to try to comfort her again or to even look at her again. He would always look at her as if he felt sorry for her because there was something she just wasn’t getting.

Julie was sleeping peacefully. At eight years old, she was a very pretty girl. Her hair was strawberry blonde and she was petite as Beth had been when she was a child. Beth couldn’t resist brushing the curls from her forehead and then touching her check. In her sleep, Julie turned her head towards her mother’s hand and made sucking noises. The doctors called this the rooting reflexes and had patiently explained this was yet another symptom of Julie’s neurological condition.

Watching her daughter sleep was often enough to convince Beth that Julie was just like any other child. How could Tom be so cruel? Yes, the wheelchair was a pain, yes, changing diapers on a child bigger than an infant was difficult, of course the tests showed problems. These were no reasons to give up. Beth could accept that Julie might face limitations but she would get better and stronger.

As she thought this, Julie suddenly let out a groan and her body stiffened then began the convulsions. Beth looked at her watch and reached for the clipboard beside the bed to record the time and length of seizures. Usually Julie’s seizures lasted less than a minute and passed without incident. It was good that she was in bed and not in her wheelchair. The bed could withstand any amount of her thrashing but the wheelchair was dangerous. To keep her from swallowing her tongue, Beth rolled her on her side and moved her to the centre of the bed . Julie’s eyes had rolled up in her head and her legs bicycled.

“It’s OK, Jules,” Beth said. “Mommy’s here.” Of course, she could never be sure if Julie heard her or not but if it had been her having a seizure, she would have liked to have known her mother was nearby.

Beth checked her watch again. A minute had passed. As suddenly as the seizure started, it stopped. Julie opened her eyes and turned to see her mother. “That’s my girl,” Beth whispered. “Welcome back!” she smiled.

A think trace of a smile came to Julie’s face as she rolled back. Then, as if a cloud had passed over, another groan escaped from her and the convulsions started again. This time, Julie had clutched the blankets and her head shook unnaturally from side to side. She was groaning loudly so Beth tiptoed to the bedroom door and closed it. She did not want Tom to hear and possibly come in to see what he would see as further evidence that Julie should be taken away from her. Dutifully, Beth looked at her watch to time the length of the seizure.

“C’mon Julie,” Beth said as the minute passed. “Come back to me.”

The seizure stopped and Julie took a huge gulp of air. It was too much air, too soon and she began choking.  Beth rolled her on her side again and patted her back the way the occupational therapist had taught her. Julie continued to cough and then, unbelievably, another seizure started.