A year ago, Emily had spent a very unpleasant few hours in the ER, endured a very bumpy, rapid trip to Indianapolis in an ambulance in the middle of the night and was recovering from an emergency appendectomy that was done in the wee hours of the morning. It was a frightening experience but she endured like the trooper she is and came out of it better than we expected.
It is hard to believe a year has passed – in some ways Em has made real progress in fighting EDS & Company, in other ways, we are still fighting the same battles. Certainly, some of the issues have worsened and we go round and round trying to find answers. And, it has been a long recovery period. I don’t know that she has really fully recovered from the surgery even now but, she has made some strides in other areas.
The surgery revealed some problems that desperately needed addressed – a little like peeling back the layers of an onion. We are still peeling away and trying to figure out what those layers reveal. One of those layers will be peeled back on Monday – she will finally have a gastric emptying study. Who knows what it will reveal, but it is long overdue.
This business of living – day in, day out, year in, year out – with EDS is exhausting and frustrating. The problems never seem to stop, never really go away – they seem almost eternal. You address one issue and another pops up. Like running on a treadmill, you feel like you never really get anywhere.
But, a year ago, we weren’t thinking about any of that – we were just feeling incredibly blessed to have our daughter safe and sound and still with us. Not a bad thing to remember when dealing with the phone calls, appointments, tests – all of the minutia and uncertainty of today.