Soraya’s Annual Neuromuscular Appointment

Our annual visit with Soraya’s neuromuscular doctor came and went… the mood was somber and noticeably different from years past.

There has been SO much change/decline in the past year. Hearing Soraya share all the things she can’t do anymore was heartbreaking.

Even her vitals were different – her heart rate was 147 just from stepping on the scale. This told us her body is working so hard to do the littlest things 😭

For the first time, she didn’t have the endurance to complete the full exam. There was no watching her walk down the hall this year or do all the grip testing like usual.

The doctor commented that the modified exam appeared to wipe Soraya out. While she seemed surprised... sadly, Safi and I were not.

We typically see her once a year. This time, she asked to see us again in 6 months.

In past visits, our conversations were filled with optimism. Yesterday, the focus was on living in the moment and living with uncertainty.

The stark reality of all of the above – we are in a major shift of decline.

Why do these changes hurt so much even when you are anticipating them? I do wish anticipatory grief would somehow lessen the pain of the decline that is happening 💔