There are a million cliches out there; what doesn’t kill you makes you stronger, it’s always darkest before the dawn and so on. I hate those kind of sayings. I don’t think they do the process of riding the roller coaster of life justice. Feb. started out rough, really rough. I don’t think I have ever been so close to the reality that Claire might be leaving us sooner than later. It was horrible. Even after the seizures and vomiting subsided a bit she wasn’t back. There was no smile, no sound and the look in her eyes was more distant than piercing. We went through the days just faking it and trying to do what we could. By Valentines Day she was better but I was fearful. Holidays, birthdays, anything special with extra excitement seems to bring extra brain activity and the last time we rode in an ambulance it was on Valentines Day. Somehow, in the spirit of you never get what you expect, Claire had a great day. I picked up my smiling, bright eyed girl from school and was relieved when she continued to shine at physical therapy. Since we had time to kill before we had to pick Chloe up from school Claire and I headed down to our favorite little stretch of sand to take in some waves. There is something about the beach that transcends language and abilities and Claire comes to life there. It was magical, like it always is. Eventually we had to go and that involved me carrying her up these stairs.
As we reached the top a couple remarked to me that I wouldn’t be able to carry her all that way too much longer. Perhaps it wasn’t the most sensitive remark that they could have made but in some weird way it was exactly what I needed to hear. In the process of all of the crazy I was giving into to my sugar addiction too much, I was tired and not making good choices with what I ate and did to take care of myself. As I struggled to get Claire into her chair she glowed, her smile and eyes told me over and over how much she loved our time in the sand. In that moment, at the top of the stairs I vowed to myself that I would do whatever it takes to be able to continue this activity for as long as possible. I can get stronger, eat better and Lord willing, I believe that Claire will get stronger and contribute to the process too. Fast forward two weeks. Claire had been doing well and it freed me up to focus. I’ve been eating a plant based diet with no refined sugar and I feel amazing! With a clearer head I relate to others better, I remember more details and have less frustration, it is amazing. Still, eating well and stretching doesn’t take all the pain out of life. I was a little down as we had to visit the neurologist to discuss upping the seizure meds. When I picked Claire up from school later that day it was 77 degrees and we had a few hours before Chloe needed to be picked up. We brainstormed but couldn’t think of anything better to do than go down to our favorite beach and get our fill of sun and sand, but this time it was different. When the time came to leave, Claire did an amazing job clearing the first 13 stairs on her own. I was so pumped and proud of her that once she fatigued I picked her up and ran up the rest of the way and it felt easy! It was such a good reminder of why I need to take care of myself. All I needed was somebody to tell me that I couldn’t to be reminded that I am a fighter and I will be fighting for life, much like Claire does every day.