Life Is Good

Good news comes in a tempered package. The results of our guy’s 24 hour EEG a couple of weeks ago were more than we could hope for. No spikes, no blips – there was no unusual activity happening in his brain. Wonderful news and his mom will learn what this means and what, if any, changes will ensue at an appointment with the neurologist tomorrow but since receiving the news, I’ve been feeling more optimistic than I have in the past five years. His future is less bleak. This is a step forward rather than backward, and life is good.

But, and there is always a but, it’s only a step, a rung up on his sky high ladder. His clear EEG measures the activity of a brain drugged heavily with anti-seizure medication. What would it look like without the meds? Maybe a gradual reduction is in order – the doctor will decide. The fact that his dosage hasn’t been increased since he was stabilized on these meds four years ago is a good sign. His growing body has gradually needed less to control the seizures as his weight and size have increased. Life is good.

Our boy will always be our boy. Other quirks go along with the syndrome. He is weak and tires easily but his heart doesn’t know this as he pursues his daily activities with enthusiasm. He’s the only seven year old that I know that puts himself to bed at 6:30 but knowing that his tiredness has followed a successful  and active day makes it okay. Life is good.

He has difficulty as school, but this year with the love and attention of a most excellent grade two teacher, he has grown by leaps and bounds. And he is happy to be at school again. Life is good.

Socially he’s a bit of an oddball, but he is kind and sensitive. He’s a lover not a fighter. He has a wonderful sense of humour, a unique perspective and he’s really, really smart. The other kids like him. He’s not a victim. Life is good.

Feeding him is still a nightmare. His sensitivity to textures and his unwillingness to try new things make us nuts. He doesn’t recognize hunger and if something doesn’t look right he won’t eat it. He eats a very limited number of foods and when he decides he doesn’t like an item anymore, we have to search for a substitute to keep him nourished. However, there are a few foods that he eats consistently including grandma’s buns so he won’t go hungry on my watch. Life is good.

Now, if only others could measure what this all means in a rational manner. The first comments after the EEG, even from those closest to our guy, are over the moon. “So good, he’s better, he’s cured, no more problems”. It puts a damper on the joyful news because no, he’s not cured. Everything is not alright in the sense that others refer to better and alright.

Often people lose patience with chronic illness and perspectives become skewed. A child’s struggle is hard to watch. It is easier to believe the illness is finished and that the quirks and the behaviours are due to something else – something with a practical and easy solution. It is hard to accept that what is, really is. These results are indeed wonderful news and I am filled with hope but there is a long road ahead before everything is “better”. However, we’ll take what we can get. Life is good.