One day at a time

I’m going to be vulnerable and admit that I’m at a low point with Bridget’s diagnosis. The jarring reality of what is happening inside of her keeps me awake at night. Just when we think we have figured out what triggers her Sundowner episodes, she has another one.  I feel like a failure.  As a mother, your number one job is to protect your child. How come I’m unable to do that? 

Friday was the first day of school and I picked the kids up and wanted to meet Michael at the football game. I could feel an “episode” coming on with Bridget so we took meds and ate dinner hoping that would soothe her. Just as we were making our way through the parking lot Bridget lost it. The panic, confusion, and anxiety took over. There was nothing left to do but turn around and go home. Defeated and isolated once again.

Bridget’s falling has also become more frequent. Her legs just don’t seem as strong or steady anymore. There are more and more bruises decorating her little body. She will be observed at school this week by the district PT as there is discussion about the need to wear a helmet throughout parts of her school day to keep her safe as she has been hitting her head more often. Due to the muscle weakness in her legs, they are deciding if a stroller or wheel chair will be best to help conserve her energy throughout the school day.

I feel like I’m grasping at ANYTHING to find ways to help Bridget feel comfortable. We can tell that she must be in some sort of pain, but we cannot make the connection to help her. I know that there is no cure for her syndrome, but I at least want her to be pain free. So here I am...failing at motherhood...and my daughter’s life is slowly being stolen from her. 

My only hope for the near future is the neurology appointment that we just lined up in October at Blank. In the mom group I’m a part of I noticed many other children with similar behaviors taking a specific medicine to help with pressure in their brains. Our behavioral doctor decided that working with the neurologist would be the best route to go and they will be able to determine if this specific medicine may at least alleviate that pain. 

Sorry to have two sad posts in a row...but this is the reality of Sanfilippo. Just trying to take it one day at a time.