About Grace...

Grace’s story, like many other stories of epilepsy is rather unique.

There again, all children with epilepsy are unique so perhaps our story is really no different from what anyone else has to say.

Grace was diagnosed with epilepsy at age four.

She was just about to start Pre-school that year. I knew “something wasn’t quite right” for about a year before hand and we had done the rounds of hearing specialists, eye specialists and psychologists, all whom pronounced Grace as normal. This of course was a reasonable assessment for these doctors to make, as within the bounds of their specialties, Grace was indeed normal. It was also suggested by one of these doctors that maybe I had the “problem” rather than Grace.

This was demoralizing and were it not for the faith our G.P. had in my concerns, it would have been easy to allow self-doubt to overtake the need to help Grace. I can still remember the day clearly.

It was January, stinking hot and Grace’s eyes rolled into the back of her head. She gave a shudder, then another and twisted her head to the ceiling. Back to the G.P. we went. I remember saying, “Well, guess what happened today!”

She examined Grace. It all became a little blurred at this point but I do remember the word “epilepsy”. I also remember (foolishly, I now realize) feeling relieved as I now had an answer. Off we went to the neurologist.

Luckily for us, he was the only neurologist not on holidays that January. It’s funny how fate works. I wonder sometimes, how “lucky” he must feel!

We left his office, armed with a prescription and instructions, re-assured that this “ epilepsy thing “ will work itself out in a year or so…….. Four years later……. Grace has had excellent medical care. She has no lesions, scars or anything else on her brain. She also still has epilepsy.

The medications don’t work for very long. So the seizures had worsened. We became “regulars” at Mater Children’s in Brisbane. Tonic/ Clonic, Myoclonic, absences.

Poor Grace had just about everything. Usually the seizures lasted around a minute. But sometimes they didn’t. Sometimes, they just wouldn’t stop and would roll, wave after wave until finally another new drug would work, at least for a while anyway. Still, I remained positive. There was always someone else much worse than Grace. She could talk, walk, feed herself and attend regular school.

Everything was under control in my mind until one day in Year Four, Grace arrived at home with her report card. Poor concentration, unable to keep up, unable to follow directions, unable, unable unable. How could this be the same child? I recalled her doctors saying something about school becoming harder as she got older, but I had smiled politely at this advice.

I’m a teacher, so these things weren’t going to get out of hand and up until Year Four, they didn’t.

The seizures worsened. Grace lost a third of her schooling that year and had four hospital admits. I could recite the hospital menu, tell my friends which room had the best view and I got to know the paramedics on a first name basis.

Still, things could be worse I thought. Grace is now eleven years old, almost twelve and yes, things did get worse. Frontal left lobe epilepsy affects memory, concentration, language development and acquisition, maturity and consequential thought. School became a nightmare.

Everything moved too fast for Grace and her former school while trying their “best”, was so chronically under resourced for children with special needs, that very little was achieved academically. The problems at this school were compounded when Grace’s father and I refused to accept a diagnosis of intellectual impairment and proved (with independent testing paid for by ourselves) that Grace’s problems at school were due to a speech /language deficit caused by the seizures. Being a teacher, I know too much about how the system works and I could see it was time to move on. Being a teacher, it was assumed, quite incorrectly, that I would accept the way the system works, complete with all its failings, but one does not do this with one’s own child.

Grace was finally, after a great deal of stress and anxiety given an ascertainment in speech/ language impairment. This would enable her to be admitted into a school that dealt effectively with this type of problem. I really resented being held to ransom by the ascertainment system and its prejudices but I was not going to accept an unrealistic ascertainment just to make things easier for a few people. It was more than simply being an intellectual snob. Not getting a correct ascertainment, meant not getting the correct kind of teaching for Grace. Her father and I could see that she was becoming increasingly frustrated with school and learning. Her behavior nose dived and we resorted to withdrawing her from school for a few days each week to lessen the stress on Grace and on ourselves. The seizures continued. Home life became a powder keg.

Hurtful comments were made and regretted. Grace’s brother and sister (who do not have epilepsy) started to react to the tension at home. The “weepy willies” become a normal part of the family’s day. Things needed to change, as implosion upon ourselves was close. Surgery was suggested. Tests were done. I didn’t hold much enthusiasm for the idea of having my daughter’s head cut open but I knew that in my heart I had to run with it. I could say to myself then with a clear conscience that I had tried everything. We made it as far as the neurosurgeon.

Grace was not a suitable candidate and I was relieved. Around this time I started to notice a great many profoundly disabled people. People who needed wheel chairs, were unable to talk, totally dependent upon their carers for the simplest thing, bound in bodies unable to oblige in any way. I am not an overly religious person but I did think God was giving me a message or at least a big, but tactful hint. The new year brought in a great many changes. Grace changed schools and is a different person. Her confidence has returned, she has new friends and she is learning. It wasn’t easy. After a year given over to colouring in and not much else, Grace was not impressed with being required to do real schoolwork but this is getting better. She has even returned to the pool. Prior to her epilepsy worsening, Grace was an excellent swimmer and we realize now how much giving up swimming hurt Grace emotionally. For obvious reasons, I wish

Grace wasn’t good at swimming but if an acquaintance of mine can let her blind son go horse riding, then I can be strong enough to handle swimming. She is watched like a hawk and she knows her limits. Now there is talk of the special Olympics. I am so proud of her. I could never have achieved anything like that in sport. Grace has not had a seizure for three months. This has not happened for a very long time. Grace starts every day with the phrase “I am not having a seizure today”. Maybe these positive thoughts are the key or maybe it’s those new blue horse sized tablets she swallows every day. It could be the lack of stress at the new school and their wonderful air conditioning that keeps her from becoming over heated. Perhaps, after a long time God has decided that my little girl deserves a bit more of a fair go. I don’t know. What ever it is I hope it keeps up. Stress is carnivorous. It will eat you up if you don’t watch out. It nearly got us.

Home is happier again. We aren’t waiting for the next problem. It isn’t perfect, but it’s O.K. All the children have a smile on their face most of the time and so do my husband and I. We almost have the normality we’ve craved for so long.

Maybe there will be more seizures but it wouldn’t it be something if the last lot of seizures were the last lot of seizures? I really need to believe that but if there are more, so be it. We’ll manage and we’ll manage well.