We’ve gotten lots of mixed responses when we ask: how long till she’s better? what’s the game plan? when do we look for?
The sad part is, there is no answer. The doctors have no real data. They can give me estimates. The average person recovers from NMDA Encephalitis somewhere around 14 months. 14 months….
When I think about that, it’s overwhelming. Not only because as a caregiver, this illness is difficult to manage, but 14 more months that Maddi has to deal with not being herself. She’s 5 1/2 years old. She knows that something is wrong. She will tell you herself that she doesn’t feel like “Maddi.”
Before we got our diagnosis, during a rage, she was in her room and I could hear her talking over our video monitor. She was crying out in this pathetic, tormented voice: Who can help me come back to me? Mommy can’t help me. Daddy can’t help me. Who can help me be Maddi?
I try not to think of the big picture. I try to think of things as one day at a time. It’s easy on days like today, when Maddi seems more like Maddi, and harder on days that we are reminded how horribly debilitating this illness can be.
Today, however, was a little burst of sunshine. Maddi DANCED for the first time in months. She begged for music, and she danced until she was out of breath. Her laughter filled our house, and she giggled and jumped around. Normally, I would have told her to calm herself, but I welcomed this noise. I welcomed this movement. I couldn’t help but cry tears of joy, but also tears of sadness. I know that not every day will be like this.
I have hope.
I trust in God.
I trust that she will make a full recovery.
So, I’ll resolve myself to accept this little burst of sunshine, and pray that tomorrow is a good day.