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.)
This blog is all about this spunky, sweet, independent, loving girl and what life is like living with lissencephaly. Welcome!!