Daisy Days is a month-long fundraising event uniting the entire Philadelphia community in support of one cause: The Children’s Hospital of Philadelphia. Earlier this month, they hosted a Daisy Days fashion show at their main campus in Philadelphia.
Our son participated in the Daisy Days “Hope Blooms Here” fashion show after a very long day of seizures, behavior outbursts, and extreme exhaustion. But he refused to leave and wanted to get on the stage, which he did thanks to the kind nurses and volunteers that put on the show.
Read more about CHOP Daisy Days.
Tonight we did something that we haven’t done in a while. We went out with friends.
We’ve been in this city for eight months. Two of them we spent in the hospital, most of them we’ve spent trying to find the balance between giving our son a normal life while constantly worrying about his seizures and his epilepsy. He hasn’t been able to return to school for more than a few hours a few times a week, if that, between his fatigue, his therapies, and his behavior. The poor kid is lonely. His only playmates are his parents and the nurses, therapists, and doctors at the children’s hospital. Even tonight, strolling along the street, we ran in to one of the nurses from the hospital who recognized us and came over to say hello. And I’m grateful for that. I’m grateful that they care so much, I’m grateful that he’s left an impression on them. But for once, I’d like him to run in to a classmate, or a friend.
Tonight, though, we had a bit of normal. The one day this week our son went to school, he ran in to his one friend that he’s had a playdate with since we moved here, and his friend’s parents invited us to go with them to the Night Market, a street food festival in Philadelphia.
The streets were packed with people, but our son and his friend stayed together, and played, and we talked and had a wonderful time with his parents. We walked through the mob, inspecting the trucks and grabbing a beverage and some dinner. Our son, of course, couldn’t have anything because of the ketogenic diet, but he didn’t care. He was out, running in the streets, right alongside his friend, because that’s what normal kids do, and tonight he was a normal kid. And tonight, we were normal parents, doing what normal parents do, too.
Some days, the ball hits you in the face.
Some days, you hit a home run.
Some days, I feel like all I post are sad, depressing stories. And maybe I do. Our lives are full of a lot of that now. But we’ve gone from a lot of bad days, to fewer bad days as a whole, and to just bad parts of days. We’ve even had our first two good days (defined as a) no seizures b) not having to hold him down and c) no screaming) since February.
Even on the days with bad stuff, we’ve had some good stuff, too. My son has met some amazing people at the children’s hospital, and those people care for him very much, and make him feel special when they see him. He’s even participated in a fashion show and a YouTube video while he was there.
In the last few weeks, he’s gotten off multiple medicines and transitioned to a very difficult diet that has helped with his seizures. He’s fought through 5 seizures during a teeball game and multiple attempts to bring him home only to get three hits and score twice. He’s met a football player, a professional ultimate frisbee team (that’s a thing), and super heroes. He’s shown himself to be stronger and braver than I could even imagine.
Some days, life seems hard, and hopeless, and unfair.
Some days, there are specks of light poking through the darkness.
And we’re grateful for each and every one of them.