As a parent, I know that we are called upon many times to make decisions for our children. Some choices are easy. The best thing to do is clear and we breeze-on through that situation. However when the full consequences of the different choices are not clear, then it is hard.
Nick has been having escalating seizure episodes every few months this past year. We have tried many therapies over his 43 years of experiencing seizures. We are grateful that ongoing research has developed new ideas and new drugs to help combat his illness. We trust Nick’s team of doctors to continually gain knowledge and experience treating patients with LGS like Nick. They truly do care about him and his quality of life. Ultimately, Arden and I as his parents and as his legal guardians are called upon to make these decisions about his treatments.
If we are lucky, we have experts or mentors that we can call on to help make the choice. At least they can help educate us so we are not choosing blindly. We can reach out to others who are walking the same journey we are, to discover their experiences. However, the decision sits squarely on our shoulders.
Nicks’s care team suggested that we add a new drug to the other six seizure meds he takes daily. We researched the available information online, learning about both the benefits and the side effects. We asked our peers, we chatted with the doctors. We prayed. We pondered. We talked to Nick about what he wanted to do. We read some more.
In those moments today, I wished that there was someone else who would decide for us. Someone who knew all the answers, someone who would sweep in, like a superhero, cape and all, and tell us what we should do.
There wasn’t anyone else.
This afternoon, we decided to start a trial by adding the new drug. Is it the right decision for Nick? We don’t know. We believe so, but we may never know for sure. As Nick ages and his epilepsy progresses, we don’t always know what the triggers are that will bring on the next episode.
So for today, this is what we have decided. We will monitor Nick carefully as we always do. We will try and eradicate our fear and replace it with hope and faith. And yet, if I am honest, I still wish there was someone else who would tell me what the exact best decision would be.
Please reach out to me and let me know if you can relate to this story. It can be an incredible blessing to hear the stories of others. Please share this blog post if you know someone who would benefit.