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...
Sure do love my crew—all these kiddos who have made me a Mamma and Grammy. And definitely missing the ones who aren’t here in person, although they are always here in my heart.
This is REAL. This is RAW. This is the reality of mental stress and overload...a good day here and there, where things feel like they are calming down and emotions are under control. Then there is a bad day, and a worse day, and a day that feels like nothing can ever be normal again.
Why am I posting this? It isn’t for pity or sympathy, or a cry for help. This is for someone out there who needs to hear that it’s okay. It’s okay to feel overwhelmed and out of control, to feel like there is nothing but darkness, because there are also days of light. There are days of sunshine and laughter, quiet talks and simple joys. Give yourself grace. Allow yourself to grieve, to succumb, to need, to pray. I know that I needed to hear that today. And tomorrow is going to be a little bit better. I can feel it....
This weekend has been so hard. This beautiful, wonderful child has made our lives so complex during this crazy time. I’m not sure if she is reacting to the stress of change or has been fighting a bug, but her seizures have been OUT OF CONTROL. She has nearly fallen off her chair at the table three times this weekend, with Eric or I barely catching her in time. She has dropped more times than I can count while walking, and I can’t tell if she is seizing because of the fall or if the seizure caused the fall. She has been combative as we are trying to help her with anything, pitching a fit when we don’t let her walk on her own or stay at the table. She had so many seizures tonight that we wouldn’t let her stay at the dinner table. I fed her chicken nuggets on the couch (we NEVER let her eat on my new couch), trying to help guide her hand that could barely grasp the food, but she was so stubborn about any help that she got catsup all over herself and me. Finally Eric carried her up to bed, which he shouldn’t have done since she is getting so heavy, but we couldn’t let her climb the stairs in her condition. This is turning into a nightmare. And all weekend I was thinking about how I was supposed to be in Hawaii right now, visiting my daughter and meeting my new grand baby.
I hope that things in our community will change quickly, getting back to normal (I know they won’t quickly.) I hope that the kids can get back to school and Elise can receive the therapies she needs to improve her cognitive and physical condition (I know they won’t this year.) I hope that I can get back to work and see the patients and staff that I love (fingers crossed on that one.) I hope that I can mentally find the strength to get through another week of the same battles and same nothings (fingers crossed on that one too.)
Just changed my first feeding tube!! That was intense psychologically, but to my surprise was technically easy....I feel like I just sweat a bucket, though!! 😰
The next time should be easier....🤞
This ray of sunshine just turned SIXTEEN!!!
Elise’s school nurse organized a fun little car parade outside our house and it was so FUN!!!🚗🚕🚙🚌
Thanks to everyone who participated and helped make Elise feel special!! She LOVED all the extra attention!! Special shout out to her school nurses, teachers, and paras who drove from all over to come and put this on!! You guys ROCK!! 🌈💗🥳
This blog is all about this spunky, sweet, independent, loving girl and what life is like living with lissencephaly. Welcome!!