Have you ever read I Love You, Stinky Face, by Lisa McCourt? Well, it's this little book of genius that I discovered yesterday and this is why it, along with a visit from my mom, saved me from a day of destruction.
Yesterday started out pretty well actually because I got up earlier than usual (because I'd actually slept longer than an hour) and worked out. I then got to take a REAL shower because it was Sunday and my husband was home so I didn't have to wipe, feed, or yell at anyone while shaving. After my shower, I decided to check out my facebook page while waiting for my son to wake up. I was a little nervous that he'd decided to sleep in so late, but decided to write it off as the difference in time change and enjoy a few moments of peace. While on facebook I noticed a fellow "mommy of an epileptic child" said that her morning was ruined because she was awakened by her son having a seizure. I felt that familiar pang of fear at the thought of being awakened in such a way, and my mind flashed to the image that plays repeatedly in my head. I read the responses to her post and noticed that she eventually wrote that now "things were better." I couldn't help but think about that word, "better." What does that mean in this new world we live in?
A few minutes later, my son woke up and I went down to get him out of his crib. Instead of the silly smile he usually greets me with, he looked up at me slowly and saw this droopy-eyed far away expression on his face. I picked him up and immediately assessed him for signs of a seizure. No tremor in his extremities, no fever, no cough, no respiratory distress. Not even a runny nose. Ok, so what was the problem? Fear gripped my heart further as I set him down and he didn't protest as I walked away. This was not the same baby I'd put in bed last night. Was it all starting again? Was this something new? Who should I call?
I ended up calling my favorite pediatric nurse and very trusted friend, Carla. I didn't know what I wanted her to tell me. In fact, I don't think I was expecting her to say anything, but she knows Easton and she knows me and she knows the pain and fear associated with having a child who scares the crap out of you on a daily basis. I just needed to hear a voice that I trusted. Just talking to her made me feel a little better, and I decided to just watch him. I called my dad because that's what I do when I freak out, and he came to stare at Easton with me. It's just become part of our lives...staring at Easton. My dad suggested that maybe he just had a headache or a stomach ache or something. This hadn't even occurred to me because we don't "do" easy. We don't just have "headaches." I gave him Tylenol anyway and an hour later he seemed to perk up a little. However, the damage had already been done.
At the first sign of something possibly being wrong, I began a mental checklist of all the things I would need if we ended up in the hospital by the end of the day. I even went down and put on my best "living in the hospital" jacket because it's comfortable and has pockets. I was so glad that I'd already showered because that would be one less thing I'd have to do in a hospital room later. This is how I live. Just when I think things are getting "better" something comes along to slap me in the face. You can't live in a state of "fight or flight" every single day. You can't be "strong" all the time, and so I wasn't. I mentally shut down yesterday. Easton began to act more like himself, and as he got better and better, I felt increasingly worse. My head hurt, my stomach hurt, and I didn't want to do anything but sleep. Unfortunately sleep doesn't happen either, so I just got through the day. Sometimes this is all I can do. Luckily, things were about to take a turn. It wasn't a cure-all or a permanent fix to the problem, but it was just the band-aid I needed.
My mom came and got me out of the house. Just the walk to the car in the fresh air helped my mood a little. We went to a restaurant and shared some comfort food, and it was amazing. We then did a little mindless shopping. I didn't need anything from the store, but what I did need was to not be in my house counting seizures for a few hours. Then, just as we were getting ready to leave I found this little book. I Love You, Stinky Face is a book about a little boy whose mother tells him she loves him right before bed, and he then proceeds to test the extent of her love by asking several "what-if" questions. "But Mama, but Mama, what if I were a super smelly skunk, and I smelled so bad that my name was Stinky Face? But Mama, but Mama, what if I were a big scary ape? Would you still love me then?" I read the whole book while standing in the checkout line, and began to cry. Of course she would love him if he were a super smelly skunk. Of course she would still care for him even if he were a big scary ape. She would give his skunky-smelliness a bath, and she would make a big banana birthday cake to feed her hungry ape. She would sit by his bed and hold his hand while he was ill, and stay strong for him even when she thought she would surely break. And she would come pick him up, and take him to eat some super-indulgent food and do some mindless shopping just to scare away a crappy day. And she would do this because she is his mother, and that's what mommies do.
I love you, Stinky Face.