Beach, Here We Come
Posted to Facebook on 6/24/16:
It’s been a rough week starting with Ana waking up sick with a cold on Sunday (after two amazing shows on Friday and Saturday). We figured it was all that hard work catching up with her, but then we all got sick..one by one and when Emily spiked a fever of 101.8 yesterday, I took her to the doctor and she has strep. Well, we all have strep. The good news is we’ve all started taking antibiotics just in time for our beach vacation which starts tomorrow!! I can hardly believe it’s already here…
But in the midst of vacation prep today, Jim and I had a call with Dr. Waldman, the hospital’s Director of Pediatric Palliative Care. We talked to him in the car since we didn’t want Ana to hear and the conversation lasted over an hour. He said it was something new for him to talk to a family over the phone, but lots of people had told him about Ana and she’s been on his mind for a while.
This was a hard conversation, and one that I never imagined I’d ever have about my child. Thinking tangibly about what’s to come, how to anticipate it, how to help her get through this, well, it’s so exquisitely painful. It’s hard to believe that people were going about their business -driving by, walking dogs, worrying about what to eat for lunch… when we sat there discussing how to survive a nightmare.
Jim said that we’re in a wilderness now with no path. It’s not like in the beginning when we could focus on treatment, on Ana getting better. So we need guidance now more than ever. I think Dr. Waldman can help. At least, we feel like we’re not totally alone trying to navigate the impossible. Still, I’m finding it hard to bear all of this – the truth of it. It’s so random and cruel. Why Ana?
But that’s not a good way to think because it distracts me from the present. Right now the beach awaits and Ana is here, feeling good (except for a sore throat). It’s time to make some more memories. Today’s conversation had to happen, but I have the luxury of putting it on a shelf for a little while until the next reality check.
It’s possible to be grateful and heartbroken at the same time. I didn’t know that before today.