Charlotte had a busy weekend last weekend outside of medical stuff and we managed to check off a couple of joys despite things not being awesome for her medically. We decided to try and take the girls to the Minnesota State Fair mostly because Sophie is obsessed with it, and after going two times with her Maka (grandma) she was desperate to take Charlotte and show her all the cool and fee stuff! So Friday afternoon we set out as a family to attempt the fair. Within thirty minutes of being there, while waiting for my favorite fair food the stuffed and fried olives, we were blessed beyond measure by the kindness of a stranger, enough that it brought tears to my eyes. They did something completely random and beyond kind and it sure brought Joy to this speechless mommas heart. It reminded me of my dad and the random kind things he did for us and for strangers, and I wonder if he played a little part in moving this persons heart to be so kind to us. It was exactly what I needed as this was one of our first big adventures out with the wheelchair and medical equipment. You try your best to ignore it but there were lots of stares and a few unkind words overheard from a few times, but the kindness of this person erased for the most part the ignorance of others. We managed to have some fun before the evening went south very fast for Charlotte and ended with her getting a diastat to stop a seizure on a park bench and us racing out with her on 8L of oxygen.
My brain must have forgotten what happened the night before because when I woke up on Saturday morning I felt a strong urge to have a "do-over fair day" for the girls. This time I armed myself with a new strategy to keep the big seizures at bay, and packed up the girls to head out and do it again, making sure we had our priority list of what we needed to do just in case it ended the same way. I am happy to say the second attempt was a success! Despite the crowds being larger, and it being warmer, we managed to do all that we wanted to do and Charlotte man
aged to check off two Joys from her list. This crazy mom wanted her to go down the giant yellow slide, so that is exactly what we did - checking off Joy #63. I was very worried about doing it, but the other half of me was saying "why not". I think she liked it - she loves extreme movement, and it was very fast - at least she didn't hate it I know!
Next I really wanted to do an old fashion picture with the girls and again because of the kindness of strangers who all let us go in front of them, we were able to get an old fashion picture taken from the "Roaring 20s" checking off Joy #64. We were bummed Junji wasn't able to be there to be in it too, he was not feeling well so stayed home, but happy to have the experience with Charlotte and Sophie!
Sometimes it is hard to take Charlotte out and do these fun things when she is struggling with seizures and other stuff, but I am working hard to retrain my brain that unfortunately if we stayed home every time things were not right with her we would never go out and she would never experience the Joys of life, which is very important to us. We were able to prove that despite things not being perfect and not going as planned, that Joy can be felt and experienced even if it varies from what we originally had in store for the day.
I hope that each and everyone of you can take some time this weekend and do something, any thing that brings you Joy!