This has been my daily routine for months. Watching Elise with an eagle eye while I’m doing house stuff. I’m glad I got her a new dining chair that is harder for her to fall out of. She keeps collapsing at the table, yet when I move her over to the couch to sleep it off, she pops right up and wobbles back to the table! I am catching her multiple times a day, guiding her to a safer position or supporting her head while she works through a seizure. Trying to take care of laundry, dishes, cooking, one ear always tuned to pick out certain sounds she sometimes makes if she is about to go. It’s gone on long enough that I am afraid that this may be our new normal. A normal full of wound up tension just waiting to be released. A normal full of lifting, carrying, adjusting her rigid teenage body. A normal full of tears and frustration on both our parts.
I will be honest, sometimes I am resentful of other families’ “normal” routines. Being able to go ANYWHERE as a family without the constant stress of managing a special needs child: beaches, hikes, parks, restaurants, movies, you name it. Being able to go on a LONG date with my husband. Being able to travel. Being able to go to work without the nagging fear in the back of my mind that just MAYBE something will go terribly wrong and I won’t be there to manage it.
Eric seems to handle it so much better than me. I don’t know if it’s a Daddy thing or an Eric thing. He’s just solid. Always there, always ready to take care of the heavy lifting. But he doesn’t seem to internalize it as much as I do. He just takes what comes to him and makes the most of it.
Sometimes I feel like I am in a constant state of mourning. Mourning the loss of what I thought life would be like for our daughter. Mourning the absence of significant milestones and achievements. Mourning the loss of experiences and memories. But every once in a while I’m able to break free from the fog and recognize the beauty of Elise’s life. The joy and wonder she brings to our family. Her ability to pass through significantly traumatic episodes, and come out ready to smile and laugh, so eager to embrace her little world that she ignores my protests to sit and rest. I learn so much from her.
But sometimes it’s really hard to be her Mamma...
This blog is all about this spunky, sweet, independent, loving girl and what life is like living with lissencephaly. Welcome!!