These last few months have been rough. There are good days and bad ones; there are days which are both. One saving grace is how kind people have been to Beth and myself. I have learned that as painful as it is to be asked to describe my daughter Margaret's health condition and how I'm "holding up," more often than not, my telling of the story is met by genuine kindness. And often--more often than I would have thought, the kindness is coupled with a personal story: "I have a grandchild who...." There is a whole "alumni association" of NICU families who live and work silently among us. Our stories connect us--once I know that they know, I am relieved. I don't have to explain the raw texture of my emotional life to that person.
It's not the case that a person has to have experienced what we've experienced in order to be caring. But these last few months have illustrated for me the difference between sympathy and the deeper, more nourishing iteration of kindness called empathy.
The other night, Beth and I went out to the movies for the first time in a long time. Ended up seeing "Date Night." Toward the end of the movie, my phone buzzed in my pocket--who would call at 9:45 on a Friday? I checked it--it was a physician in Philadelphia whom we had contacted for a second opinion. I told Beth who it was and I accidentally told her the name of our primary attending. Beth, naturally, immediately assumed something terrible had happened to Margaret. I corrected myself--but Beth had already been shocked out of all the night's enjoyment. The feeling--even for an instant--that the worst had indeed happened is not something that you can shrug off.
How can I describe to someone what it's like living every day in the shadow of a phone call like that for 6 months? How can anyone possibly know how it feels to have a low-grade anxiety eroding your life a bit more each day?
I can't describe it. It's grace to meet someone who, because of their own experience, without me having to say a thing, just knows.
Thanks for sharing such a real part of yourself David. It can't be easy to be this naked. It puts things into perspective for sure. Wow. You're totally correct that most of us have no clue what kind of 24 hour hell you're in. All we can do is try to be where we need to be for you & Beth & James & Grace. I am far away now, but my thoughts & prayers are with you.
ReplyDeleteThanks so much for sharing this, David. I am sending you lots of love always. I am not a parent, so I can only imagine what this is like for you and Beth. But dealing with my health and seeing how much my parents have 'aged' these past few years, I am praying that with your deep love and doctors' expertise, MG will be okay.
ReplyDeleteYou are right Dave. Most people would feel sympathy for you for what is happening. But we can tune Maggie's problems out. You can't. I didn't think about Maggie all day, yesterday. It's hard for you to stop thinking, even for a minute. You seem to be functioning at Marble as if nothing is happening but I don't know how. I am glad that you two are at least trying to do sane things at an insane time.
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