Permission to be happy
Last Friday, I was driving around by myself, attending meetings for CURE, running errands, enjoying seeing the messages of encouragement come through from the latest blog post, and I felt content. No, more than content, I was happy, genuinely happy. My children were stable and I felt productive and fulfilled. Three things I have not experienced at the same time in, well, years. However, almost as soon as I acknowledged my happiness I was racked with guilt and anxiety.
How dare I feel happy when my daughter is still seizing multiple times a day. Which led to: I should be with her not the nurse. And then: I’m being selfish by spending time away from her. And finally: why do I deserve to be happy when so many others are suffering? Look, I consider myself a fairly rational person...just with momentary fits of complete and total irrationality. As soon as these thoughts ran through my brain, I knew they weren't true but still I spent the rest of my drive trying to convince myself that it was ok for me to be happy.
I do know that the following IS true:
We function day to day at a higher stress level than we did before Miss A came into our lives.
Adelaide’s condition is awful and I would give nearly anything to have her live a neuro-typical life.
Adelaide is never going live a neuro-typical life.
What I am learning is that all of that can be true AND I can still be happy. I’m not talking about a “that was an amazing meal” kind of happy, or “what a great laugh - I needed that” happy, but, truly happy as a state of mind. The chances of a medical miracle bringing Adelaide back to us cognitively intact is next to impossible so we HAVE to find a way to make our own light in the shadows.
A common root of my happiness guilt stems from the silver linings we’ve found through our experiences with Adelaide’s illness. Three years ago I was selling venues for events and coordinating business dinners and bar mitzvahs. While I enjoyed the work something was missing, I was not entirely fulfilled. I thought making more money or having more responsibility would fill that void but it never did. Adelaide being diagnosed with Infantile Spasms was crushing but we’ve been able to meet incredible people and families on this journey. I found a driving life force beyond anything I had ever experienced in trying to learn about Adelaide’s conditions and fighting for more answers. Which led us to CURE and the work we’ve been able to do as a family for the organization. Raising money for epilepsy research, awareness for epilepsy and special needs families, connecting with other families, starting this blog THAT has fulfilled me in ways planning a bridal shower never would. To be fair though, have you ever tried to pick a brunch menu with two mothers and six bridesmaids? I really don’t miss the bridal showers…
Now, I also realize that this is much easier for me to say when Adelaide is on an upswing. Its been nine weeks since our last ICU stay, she has not had a 20-minute long seizure in six weeks and she is more alert than she has been in ages. Two months ago, happiness was a fleeting emotion, we were in survival mode. So I take this happiness with a sense of appreciation because the reality is that this “break” won’t last forever. However, the future shadows won’t last forever either.
Adelaide’s disorders have led me down a path to being fulfilled in a way I could never have dreamed which is an important part of my current happiness. I would, of course, trade it all in a heartbeat to have her healthy but that’s not an option. So for now, I’m going to give myself permission to be happy because you know what? Right now, I have a lot to be happy about.
Side note: photos taken by the incredibly talented Lori Sapio, who invited me to relive my glory days in front of the camera for a photo shoot she was doing at a horse farm. At the time of the shoot, Adelaide was in a rough patch but I forced myself to get away and had a blast with some amazing people...and horses. I couldn't be happier that I did.
