Life was challenging. In my happy posts about smiling and joy, I don’t intend to only paint an image of a happy, non-worrying, non-stressed family. Benjamin was happy and a beautiful smiling little boy, so I like to think he enjoyed his time here and loved who he was, but that doesn’t mean there weren’t “bad days” or discomfort or worry.
The IEP always seemed like the very worst day, the scariest day, the day that you had to fight like you hadn’t fought before. You weren’t just a mommy, you now needed to be an advocate – the assumed dynamic of the one meeting where the educational staff wanted to provide the least, yet you wanted to achieve the most for your child.
I received a call from the PICU around 10:30pm saying that Benjamin had an ‘episode’ and I should come to the hospital as soon as I could. My husband was actually already on his way. I had been in Ben’s room all day, and Rob and I were doing a shift change. He would stay overnight.
It was a Monday.
Halloween doesn’t have to be a difficult day for kids in wheelchairs. I always loved being challenged to come up with a costume that incorporated, or dare I say, disguised Ben’s wheelchair.