When it comes to life with lupus, I found out the hard way that you have to learn to be flexible. Canceling plans, aborting vacations, opting out of social engagements - when lupus is afoot, you never know what to expect. It's no fun to have to pull out a plan B, but preparing yourself for that fact seems to be half the battle. For me, it was as if reminding myself, "You're in a flare...don't be surprised if "X" doesn't work out so well" seemed to at least set the stage (and my mindset) for a change in plan.
Which is what happened over the recent Christmas holidays. Thankfully, it wasn't a flare that caused the alteration in my plan...but it was lupus related. Here's what transpired:
A few weeks before Christmas, my sister, my niece Emma, Deirdre and I headed to NYC for a girls' weekend. We went up for just one night, but it was plenty of time to pack in two full days of fun in the Big Apple. Before we left, I knew the nap situation for Deirdre and me would be a little dicey, given the small hotel room we'd reserved. But I promised myself that I would be flexible and just let things happen as they needed to. That is, if the room set-up wasn't ideal for us to both take naps, I wouldn't force the issue. I'd let Deirdre's nap slide, and she, my sister, and my niece could go exploring while I took a nap. Deirdre rallies much better than I do, and although we had a big night ahead of us, I knew Deirdre could make it through. I, on the other hand, needed all the rest I could get.
On the way up, Deirdre was asking what we were going to do once we arrived, and we all kept with the idea that she and I would take a nap, and then we'd meet up with Katie and Emma later. We had a chance of getting upgraded to a suite (at least we were the last two times we stayed at this hotel), and if that was the case, then we'd both be able to nap without a problem. We checked into the hotel, and while there weren't any suites available, they were able to upgraded us to a larger room. Great - still a possibility that the room would be configured to accommodate both of us. (Deirdre doesn't nap so well when she can see others napping. She just thinks it's a big ole slumber party!)
We took the elevator up to the room, opened the door, and I took one look at the room and said to my sister something like "Abort mission...if you don't mind, Deirdre's yours for the afternoon." It was obvious that with two beds side by side, with no partitions at all, napping with the two of us in the room would have been a nightmare. And I could have forced it. I could have encouraged Katie and Emma to go exploring while Deirdre and I had some rest time. I could have rigged the computer so that she could have watched a movie and relaxed, or set her up with some books to calm her down. But you know what? That wouldn't have given me the full rest I needed to make it successfully through the quick up-and-back trip. As it was, we had been up early, we would be up late, and I was going to have to nap during our trip back to D.C. the next day. No - I had very little room for error...and so I made an executive decision. Deirdre would get a pass, and I would get my sleep.
Of course, she was thrilled...and I was lucky. My sister didn't have to offer to take Deirdre off my hands. But she did, and I accepted. Sure, I wish I could have given Deirdee the rest time she needed, but I had to think of myself first. Otherwise, I could have spoiled the whole trip for all of us.
My mother-in-law once told me that babies have a way of knowing what their parents need. I'm positive that sweet little Deirdre knew what I needed that day. She knew I needed rest, but she also knew that I needed her to keep it together. Katie said she was a perfect angel during my nap - as she was the entire rest of the trip. No overtired tantrums, no difficult 3-year-old shenanigans running on fumes...she was just as sweet as can be. Which made it so much easier to know that I did the right thing, and that I might just have to do it again some day.
Of course - at just 3 years old, Deirdre's too young to say, "You owe me one." But I know I do. That's why she's my absolutely positively favorite oldest daughter in the whole world. And you can tell her I said so!