Yesterday was the perfect beautiful brisk Autumn Sunday. Rich took Tanner to flag football and I was planning to take Josie to a lunch party for my friend's nephew who has Autism. It had been a week since Josie's last seizure, so naturally I was on high alert. But, I was hoping that since adding Onfi to her medicinal cocktail, the seizures would be done with and we'd have no issues going to the party together.
We'd go after her nap. I took out a pretty outfit since she rarely gets to dress up due to 'round the clock therapy. I wanted to take a shower while she napped, but I knew I couldn't take my eyes off of her. It's funny how sometimes I just know it's going to happen. Maternal instinct, perhaps.
And then it started.
I saw her starting to stiffen and I quickly jumped into action all while thinking, f#@%!, I'm by myself.
I put her on her side. Grabbed the Diastat from the drawer. This will be the first time at the higher dose (7.5) of Diastat. I watched her for a few seconds to gauge how bad it was, and it was bad. She was staying stiff for those extra few seconds that define "bad seizure" from "mild seizure." I was trying to put the lubrication jelly on the tip of the Diastat, but my hands were shaking so much I kept missing. The jelly leaked on to the bed so I scooped it onto the tip and moved forward. Insert - count to three - press down - count to three (I probably counted to 10) - pull it out - hold her butt cheeks together. Gosh, how many times am I going to write the words butt cheeks!
It's those minutes after I administer the Diastat that are the most frightening. I know it will end soon, but it takes a few minutes. I grab the oxygen and keep it by her face. Every time I think she's fine and I take it away, she stiffens again. So, I keep it there. About four minutes later she passes out. But, just when I thought it was over and she was out, she opened her eyes twice more stiffening. That's when I called Rich and asked him to come home.
I didn't want Rich to leave Tanner's football game. The goal is to not disrupt Tanner's life. Rich ran to the coach and said, "I'll be back, I have an emergency at home." Tanner looked at the coach and nonchalantly says, "It's my sister, she has seizures." Rich was back at the field just 15 minutes later. And Tanner's team (the Jets) won their first game!
I laid next to my little passed out princess and cried my freaking eyes out. I don't do that enough. So once I started, I knew it wasn't going to be a 10 minute cry, more like hours. She's just so beautiful and sweet and precious and I have more love for that little muffin than I can ever express. All I want is for the seizures to stop. And I want her to walk and talk. That's not so much to ask is it? I kept thinking about all of our wants and needs in life. Everyone wants so much, right? We want nice clothes, straight hair, curly hair, money, success, things, vacations, things, good food, to be thin, to be strong, to have fun, to have friends, to feel good, to have things. Things, things, things.
Talk about perspective.
All I want is for my daughter to never have another seizure again and for her to be able to walk and talk. I want Josie to be able to move herself when she drools and her cheek is stuck in it. I want to take her to dance class one day in a tutu, but I'll be perfectly fine with her just being able to walk and talk and to be healthy in her brain and body.
I had a dream the other day (during a much needed daytime nap) that Janice called my name, "Nicole, come here" and I panicked as I do when she calls me like that. But, when I got to Josie's room, she said, "Look at her." Josie was sitting up in her bed all by herself. She got herself to the sitting position, and she said, "mommy."
I believe in the power of visualizing what you want in life. See it. Smell it. Visualize every detail. The Secret talks about this. So, I choose to see dreams like that over and over. I have other specific visions. One, Josie is a child running down a hill laughing, in a dress with pigtails. Another she is a teenager standing at a podium in front of a room filled with people. She's wearing a navy dress and has her light brown hair pulled back behind her ears. She says, "My name is Josie Johnson. My mom always said this would be my story to tell and I am here to tell my story. I am a miracle."
The title of this post is my inspiration song. It's called "Love and Hope" by Ozomatli. I've been running to it for years and it always gives me the extra push to keep going.
Just raise your head up and stand up, no fear in your eyes
Tell me love and hope never die
So raise your head up and stand up, no reason to cry
'Cause your heart and soul will survive.