(Then and Now on Chapter 19: Just a Mama)
I guess this still stings because it was the beginning of my letting go of a lot my expectations for myself and for Rose. Neurologist #1 had warned us about this. I did not want to hear it. She let us know that the path for Rose would no longer be straight. It felt like a slap at the time. Her words echoed in my mind many times through the years. I ended up appreciating these “mean” words.
I want to be clear here, Other Mothers, that this was not a lowering of my expectations for us, it was a morphing. We all have plans and aspirations. It was necessary to let go of these remote dreams and reach for goals that were near-by and doable. Flexibility became absolutely essential. Raising Rose required careful, slower steps to get where she is now. She has surpassed my dreams for her at age 29. I cannot wait to see what she does next.
Back then, I wanted to be a super mom. I wanted to make a difference everywhere we went. I was used to being a super busy teacher, so running hot was my mode. The busy part bit me. When I needed to give up all my volunteer post, other wiser mothers did not take my batons. At first I was miffed at them. Later I was miffed at myself. Finally, I let each organization know that I was leaving my post. The world did not end. Rose and I were better off with me being ‘Just a Mama.’ There were many other people who could have done these jobs, but Rose had only one mother.
Rose’s seizures were unrelenting at this point. All my focus needed to be on her. I needed to monitor her drug dosages, the side effects, the changes in her mood and memory. She needed extra help and time to do everything. That brain was having storms and storm damage. It was a scary time for all of us. Her falls were fast and her seizures were strong. Every day was about damage control, not Brownie badges, Accelerated Reader points or spelling.
If you ever get to this scary point in your epilepsy journey with your child. I hope you can drop everything temporarily. No more Super Mom, no more Smart Student, just survival.
During the chaos, please remember two things. Take care of yourself and write everything down.