End of 2023

Happy New Year!  The Smith family had a strong end to the year.  We had a beautiful summer filled with baseball for Everett, softball for Vivian, and various Youth Challenge activities for Eva.  Eva would sometimes ask to be babysat for Vivian and Everett’s games, and would sometimes come to the games.  We kept her preoccupied with snacks, and watching one of her summer favorites, The Sandlot.  She has a very real love for mischievous characters.  This is the first summer in three years that I did not want to go back to work.  I love my job, but we really found a groove as a family and had many happy times.

Eva was excited to go back to school, and spend more time with Mrs. Workman and Mrs. Filuta.  I think this was her best transition to school since she started preschool.  

Labor Day weekend she had her first visible seizure, and she had two nights of seizures in September.  This was very stressful- especially after the first round.  We had to put her on a medication for a few days afterwards and she slept an unnatural amount of time.  As much as I love my sleep and peace and quiet, it was eerie to have Eva so subdued and asleep for so much of the day.  For a few weeks afterwards, Brendan and I both had trouble sleeping next to her, or leaving her out of our sight, fearing she would have a seizure and we wouldn’t notice.  Brendan bought portable cameras we can set up to watch her when we are not in the room with her.  A few weeks later, she had another night of multiple seizures.  During one seizure in the morning, she turned blue, so we called 911.  The paramedics were very nice, but by the time they got there, the seizure was over, and she was resting.  They said that can happen with seizures, and if we ever feel she is unsafe, we can call and they will come out.  They came right as Vivian was leaving for the bus, and Everett was waking up.  We assured them both that Eva was fine, and sent them on their way to school.  When they came home from school, both of them asked about Eva as soon as they came in the door.  They are both loving and tough kids, and they keep me and Brendan going.  After the second round of seizures, we went back to Columbus for an appointment, and they increased her seizure medication, and set a new time for her to take it in the evening.  

At the end of the September was the Walk for Wishes at the Cleveland Zoo.  I did not go because it fell on the same date as Halloween at my dad’s campground, and that is our tradition every year, but our friends and family still turned out in their pink shirts to support Eva.  Shannon was our team leader, and she helped our team raise enough money to grant another child’s wish.  Eva’s life is so difficult, but it is some balm to us as her parents to know that people are doing good things in her name.  

Last year, we went to Disney for Eva’s birthday, and this year, we went to a Wizardfest in Ironton, Ohio.  I really like having fun plans to look forward to for Eva’s birthday because she is always so excited to be older, and I am always so sad at the passage of time.  Getting out of the house and doing something fun was just what we needed after the crazy September we had.  Eva has had a crush on Gregory Goyle from Harry Potter for a year!  I started following him on Instagram, and found out that he would be at this Wizardfest the weekend after her birthday.  We only interacted with him for a few brief minutes, but it was everything I could have hoped for.  Eva brought his two sons fidgets that she handed out to her classmates for her birthday, and she made him a wedding card since he just got married in August.  I really kept her informed about his life because I did not want her thinking that she was going to meet the boy, Gregory Goyle, from the movies.  I wanted her to understand that he is now a grown up, and that he was an actor playing a part. When we met him, I asked her if there was anything she wanted to say to him, and she shyly looked down, and said, “I love you.” It was so cute.  As a family, we made a weekend of it, and stayed at a Holiday Inn we stayed at when Eva could still see.  She remembered the frog slide and kiddy area of the pool there.  We had a lot of fun splashing around.  

The holidays also went well.  Eva gets a little extra excited around Christmastime.  This is not our first rodeo, so I feel like we handled it as well as we could have.  When she started waking up multiple times in the middle of the night to ask if it was Christmas, ask about candy, ask how many days until Christmas, and also ask for water, but not water from a cup in the bathroom, or water from her mermaid water bottle, but from bottled water with a white lid, our patience started wearing thin.  Eva has also had a growth spurt, so we called Dr. Emily in Columbus to see about medication changes to help us all sleep in December.  She made a few tweaks, and the sleep got better.  

We could not have asked for a better Christmas with our friends and families.  Eva had a few meltdowns, but they passed quickly, and then she slept really well for a few days after Christmas, which meant that everyone slept well.  I think the theme of Eva’s Christmas was crafting and dolls, Everett’s was Browns- the boy is obsessed with football, and Vivian’s was reading.  They are all very good kids.  

Thanks for reading, and I hope everyone has a great start to the new year,

Michelle