Today marks one year of seizure freedom. One year of not having to use the Diastat. One year of constantly looking over our shoulders. One year of listening at every sound he makes and diagnosing every movement to make sure we aren't missing anything. One year of worry and wonder when the next one will cut that time short. We have eerily been here before. The last time was one year and four days. 369 until all our worries and struggles began again. Each time they come back they seem to be worse than the last. I'm not sure I am strong enough to handle that again. But Jayen is the one who has to go through it. Jayen's body is the one who takes the brunt of it. Why am I complaining? His seizure affect the rest of us too. The emotional toll it takes on myself as his mom is unmentionable. As a brother and sister it takes time away from them that we have to give to Jayen. But they are both incredibly strong. And even more so incredibly empathetic towards others. Watching the two of them interact with other kids melts my heart. I can't thank God enough for giving them all to me. I know I am truly blessed! I can't take these things away and I can't make him better. It is such a crap shoot how long medicine will keep the seizures away. For now I will continue to pray that Jayen's seizures "go away and don't come BACK!"
To celebrate the day, we had a purple day. My friend Kerrie helped me design and printed this shirt for Jayen. I'm so happy to have a way to help him celebrate and share his joy with others. We had purple pop tarts and purple juice for breakfast (I don't typically buy pop tarts, but the kids suckered me into it since they were purple. Once in a while, I'm the cool mom!). For lunch we made purple cabbage chicken salads, purple Jell-O, and purple juice again. Daddy was still in Nebraska but was coming home today. We made purple cupcakes to share with him after picking him up from the airport. We've missed him so much! Mommy really needed a few hugs from him the last couple of days. After a great reunion and many, many hugs later we were able to celebrate with daddy at a restaurant. Mommy really didn't want to cook anymore anyway!
I'm grateful for today and this amazing milestone. But of course, I'm cautiously celebrating waiting for the next seizure to strike my baby helpless. I don't think I will ever stop worrying when the next one will come.
No comments:
Post a Comment