“Put your faith in God, but don’t stop working.”
Several weeks have passed since we returned from the Bay Area, and I am happy to be able to say that my daughter has been able to- at last- start taking the medicine she needs for her narcolepsy. She is taking Xyrem, which as a medicine is complicated; it is heavily controlled due to its history of being abused and misused, and it is only available through one central pharmacy in the U.S. Thankfully, our interactions with the pharmacy have been overwhelmingly positive, and we have been gifted with good support as Mari began her treatment a week ago. Originally, we had to wake up in the middle of the night to give her doses, but have since been able to shift to a schedule that is allowing us to sleep decently for the first time in quite a while. (We’ve been woken up most nights for several months because Mari, out of having terrible dreams, would come into our bed, sometimes several times in a night.)
Mari is feeling better. She is getting restful sleep, and we have noticed that some things have improved, such as her moods, the normalcy of her appetite, and even things like her impulse control. Our evenings at home have had significantly less struggle, which this has proven to be a huge relief for us.
Yet, at the same time, we know that this is not the end of our struggle, or hers. We are still working on finding the right dosage for her, which requires being in touch with the crew at Stanford, and a great deal of patience. She still has times where she needs to sleep, and moments in which she is frustrated. However, those struggles are more like those of any six-year old, and it’s not easy to raise a six-year old, let alone one with a chronic disorder.
In the gradual settling of things, I’ve found myself sitting and wondering, “Did this all really just happen?” The answer is, of course, yes, it did, and to be able to step back from it and look more. Even with a diagnosis, proper treatment, and a bit of resilience, there’s a feeling of starting anew. It’s hard to look back at what happened, and not feel a sense of sadness for what did not go well. For what you regret saying, doing, and thinking as a parent, spouse, family member, coworker or friend. For the first time in years, I had a feeling of hitting the absolute bottom.
But in community, and in communion with the people around me, I realized that because of that bottoming, and sharing that sentiment with people closest to me, it is possible to go beyond it, and to do better. And it’s possible to keep moving, as the waves do.
Every low point of a wave gives way to a higher wave. But it takes time, energy, force, and gravity.
And, as the above proverb suggested, it takes work.