The worst part about being in the rare world is you don’t always know what to expect.
Things seem to be consistent and fairly calm one minute…until it isn’t. It is like you are constantly waiting for the other shoe to drop.
When life hands you an unfair deal…you try your very hardest to make the best of it.
You get it, I have a child with struggles. We all have struggles and challenges. But it just seems so heavy…so unfair…when all we want, all I want is some normalcy and calm.
Will she start having more seizures? Will her sleep issues that are so closely connected to her syndrome start soon? Will she be cured?
The constant wonder and state of unknown can be too much for one person to handle.
But you just handle it. You put on your big girl pants, slap on a smile, wave to your colleagues, chat with your friends, make plans, and create the small talk.
“You’re always so upbeat,” someone remarked today.
I really am, I thought. But there are times when hiding behind that facade seems exhausting.
Life is good right now. Things seems stable for the most part. But…the hardest part about living in the community of constant questioning and worry…it makes you wonder…When will the other shoe drop?
