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.
