Her Story
The girl we knew, and the years since
Her name is Brinlee, and until she was five years old she was the spunkiest, most alive little person you could imagine: incredibly smart, endlessly curious, with a love for life that filled every room she was in.
Then the seizures started.
Brinlee developed epilepsy. At first we had hope. Many children who develop epilepsy later outgrow it, and we held onto that. But there is a rare group of children who don't outgrow it, and a rarer group still whose seizures don't respond to any medication at all. Brinlee is in that rarest group. Her epilepsy is medication-resistant, and it is the underlying cause of a severe, ongoing decline that has reshaped every day of her life and ours.
Over the last six to seven years, the little girl we knew has been slowly taken from us, not all at once, but valley after valley. That spunk, that intelligence, that love for life has been gradually replaced by suffering and struggle, with no relief.
"The daughter we knew at five years old is no longer there."
What most people never see is the grief. We would hit a new low, tell ourselves okay, this is our daughter now, grieve the child we had, and slowly accept the new reality, and then she would slip again, and we would be grieving all over again. We did that mostly alone, for years.
For six and seven years we have tried everything: medication after medication, each with its own harsh side effects, a strict ketogenic diet, specialists in three cities, and a search that is still ongoing for a diagnosis rare enough that no one has yet been able to name it. We learned the hard way, to stop accepting advice as-is and push back (sometimes aggressively) when needed. Some things bought us a little time; nothing has given her back.
We never asked for help. Not out of pride, but because we would find no joy in anyone else carrying what we carry. So we just kept going, until we reached a breaking point: emotionally, psychologically, and physically. It was only when people refused to take "we're okay" for an answer, when they insisted, forcefully, on helping, that we finally let them in. That help pulled us out of the trenches. For the first time in a long time, there is a glimmer of hope for our family again.