Sometimes I dream of the Liberty we had. In my dream she is supposed to be inside playing, instead she is high up in a tree. Her hair is in pig-tails and she is wearing her Crocodile Hunter outfit. There are dinosaurs in her pockets. Or laying on the trampoline with her dogs. Or she's built a blanket fort and is singing to her stuffed animals, or her dinosaurs. Whatever is in this version of the Liberty dream, you can assume she is doing her own thing and she is busy. And I am busy as well. I prayed several times for this dream to change and that I would go and watch her play (or join her). Sometimes it happens.
I was not a child who could be still. Ever. From what I have been told, I was busy. About the only things that seemed to settle me were music or sitting on Grandma's lap while she read to me. Beautiful Mariah could sit and play or cuddle and watch a movie- most of the time. Like the wind, she could have some super active times, but her movies would keep her attention for long periods of time. Now, Liberty. Sweet Liberty was always busy as well. She climbed out of her crib at nine months old. She was uncontainable from then on. Grandma told me Libby's truth was in her name. I had claimed her business when I named her. That hasn't changed much.
Even now, Liberty is busy. Her body is stiff and mostly unmoveable. She doesn't have control over it, but her body continues to move. All the time. Sleeping, wide awake, eating, laughing, or pottying her body is moving to its own rhythm. She has Deep Brain Stimulators, one of each side of her brain to calm her body down. She has a Baclofen pump that is routed through her spinal column giving her muscle relaxant continuously throughout the day. She takes a Parkinson's med five times a day to slow the jerkiness of her muscles. All of that and yet she is busy.
During this time of quarantine, I have been able to see Libby for who she is now. She is still sweet and funny we just have to pay attention to when she can let it out. She gets impatient at times. She is sappy and lovey at times. She is tired a lot of the time. Blessed by this time with her, I have been able to get to know and see her for who she is now. This is not the child I had ten years ago. Or five. Or two years ago. She is different. She has to be. Her body and brain has betrayed her, and all of us, in many ways. I could be angry and sad, so very sad, at this betrayal, but that has consumed far too much energy already. I can see her for the completely different and beautiful person she is.
She still has a voice, of sorts. Even though we are down to one-syllable words generally as responses. I miss getting to actually converse with her. So much. I'd much rather talk with her instead of talking for her, but here we are.
Please do not think this is a sad post. It really isn't. For the first time in my life as a mother, I have been home with my kid. I never got to be home with Mariah. I started working full time when Mariah was five weeks old. I returned to work when Libby was six weeks old. I have never not had at least one full-time job or at least two part-time jobs. I missed so much of my girls working for us. So much. I regret the time I missed with them, but I did what I thought I needed to do to provide for them. I now know this regular mom guilt. I was busy.
This time that quarantine has given us has been a blessing. I believe this time has prepared me in some ways for our future with Liberty. I feel more intuned to her body than I have in a very long time. Life may not ever be this slow again. Hopefully never again due to a viral pandemic! I have learned so much from this time and do not want everything to go back to normal. Our normal was already wonky, and I look forward to creating a new normal. A normal that is slower in some ways.
**We have been converting some of our family movies to digital downloads. I was able to actually one video with Liberty playing. For years, I could not even look at her younger pictures. I feared I would cleave in two. The half of me that is Liberty's would implode. But I didn't tear apart. I saw the pictures from before. Before the illness. Before her body quit. I watched and cried. I let myself just cry and laugh and cry some more. I sat in that revelry. The beautiful sadness that is this kind of change in a child, or any loved one. I sat there and watched. And it hurt to my core, but I did not rip apart. I needed to not be busy and simply see her when she was. For who she was so that I could see her more clearly today. Isn't that crazy?!
Let's think now about how to not be so busy.
Be blessed and stay safe. Know that you loved and needed. We all need each other.
