Hands

One of my favorite times with Clara is when I rock her to asleep. She gets very relaxed and I can maybe for the first time that day spread out her fingers into my hand and she will leave them there. 

Clara has Spastic Celebral Palsy. Spastic cerebral palsy is the most common type of cerebral palsy. The muscles of people with spastic cerebral palsy feel stiff and their movements may look stiff and jerky.This results in stiff muscles which can make movement difficult or even impossible.Muscles appear stiff because the messages to the muscles are sent incorrectly through the damaged part of the brain

Her condition was a result of being born premature, with complications that lead to brain injury. Clara's brain condition is called PVL. 

Periventricular leucomalacia  is a condition in which decreased blood flow to brain tissue causes it to soften up and eventually die, leaving behind cysts filled with fluid. Over time, these cysts may fuse together or collapse altogether. The affected brain tissue and the nerve fibers that run through it help to control body movement; their loss will have an impact on this ability.PVL leads to motor disorders, the most common of which is cerebral palsy (CP). Often, the brain tissues affected by PVL are those that control the legs, though if the damage is more extensive, one can expect that other parts of the body, including the arms and face, will be affected. 

Clara was diagnosed over a year ago, November 2014. Before then we did have an idea that she had CP, but nonetheless we weren't really prepared for the extent. Since then we have had an enormous amount of HOPE that she will progress and devleop, even though it was explained the rate would be very slow and it has. I have asked God so many times to heal her, but I think now I just am learning to be content on how he created her to be. Everyday lately but my goal is just to love her, love her....enjoy her. 

It has been a long journey in only a year, and the weight of the CP has been beyond comprehendable as we are still navigating through a lot with her and really both girls.  However over all there has been so much to celebrate. We are so very proud of her. 

For a good amont of the day Clara keeps her hands clenched, or pulls/jerks away when we try to use them or help her play or perform certain tasks. The severity of this can be determined on what kind of day she is having and how she feels. Some days her hands are beautifully opened, and other days they are closed with her thumb tucked in. Her better hand is her right, and she uses this one a lot. 

Clara does like to have her hands massaged with lotion, but even this can very intense and she puts up a fight and jerks away. I always persist that we are doing it anyway. It is so good for her.  

This jerking away is very frustrating for me, as I just want to show her new things to touch or hold. I sometimes at the end of the day feel that I  just don't know how to help her/teach her new things. Yes I can love her, take care of her, but I can't help her learn, explore, devlop the skills that she needs. I can't help her get better, and as her mother that hurts very much. 

However yes I know this isn't true, but it feels very real during the moment. 

I am trying to just take cues from her to see where is is each day, and what she is ready for. If it isn't a hand day, maybe she will rock at rolling, sitting or standing.  Or maybe it's just a day for reading books and singing. I know the next day or even the evening could be very different. 

However at night in her dark room in our silence,  even before she falls asleep I take her hands and spread them out, and study each finger and line in her palm. I hold them close to my face like she is holding it, and thank God for that moment and for another day.