Not every post can be a fully formed thought (since as a mother of three young children I have trouble forming these anyway) so I figure I would try a post of quick questions and answers (the answers ended up being longer than I thought!) If you have any that you've ever wanted to ask, no matter how personal you think they are, you can post them in the comments section. Below are some questions that I pose to myself sometimes:Q: What's the worst part of this so far?That's a moving target. Some of the worst time was spent pre diagnosis in the uncertainty of what was happening to Talia. It was exhausting to be with her daily and try to get her to inch toward a milestone that I now know she was never going to reach. Then in the evenings I spent time imagining what horrible disease she was going to have and how our family would deal with it. Uncertainty is worse than knowledge, no matter how terrible the answer turned out to be.The worst part now that we are a couple months post diagnosis is watching Talia become even less responsive and reactive to us. It seems like 23 hours of the day are spent not unhappy, not happy, simply neutral. The neutrality hurts almost more than the crying. At least crying is trying to tell you something. Neutrality indicates that her brain isn't even trying to make sense of her world. It's been like living with a newborn who is all work and gives nothing back, but at least with a newborn you make silly faces at because you know that eventually they will connect your face to the word mama or dada-there will be growth. I make faces at Talia and know that while she knows who I am, her response won't, can't be what I want. Still, I'm grateful that she's not living her days unhappily or in pain. And then of course, there is one hour (sometimes it's an hour of cumulative time spread out throughout the day) where Talia really does pay attention, look straight at us and laugh at the air I blow in her face or at the doggy I pretend to be (that's a particular favorite). I've learned to really pay attention to these moments and appreciate any small amount of interaction, because I know how big these are for her, and how difficult they are for her to achieve.Q: What's the question you hate the most?A: Sad eyes, a well meaning look, head tilted to the side, perhaps a hand on the shoulder and then the dreaded question in an almost lilting speech pattern: How Aaaaaare You?I think that anyone going through a serious illness or experiences a serious loss dreads that question. Of course it is posed by well meaning people, so I don't mean to say that I hate when people check in on me, that is far from the truth. I'm obviously totally open to talking about Talia and I appreciate people wanting to check in on us, but unfortunately this well meaning question asked in the manner above usually presupposes that my life is terrible and I'm currently so fragile that I need to be handled with kid gloves. It's also SO broad. How am I? I don't know- how are you- can you sum up to totality of your experiences in the past day, week, month- all of your current stresses and joys and answer the question "how are you?" My answer to the question is "I'm fine-" I'm simultaneously terrible, maybe in that instant I'm also tired, or hungry, or cranky about the weather or something banal like that, who knows.One of the best things I've learned from Talia's palliative care doctor (who is beyond extraordinary) is how to rephrase that question. How's today? she asks. That's a manageable question. Today is something I can handle, yesterday may have been something else, tomorrow is something I don't want to think about but today, this moment, I can discuss.The New York Times (my bible) has a piece on the dreaded question along with some good tips.So what do I want of the people around me? Please do talk to me about Talia, and also ask about my other kids, and definitely talk about your life. Please don't self filter out your complaints about your life, especially using the phrase "well, it's nothing like what you're going through, but. . ." Your life is yours, and your problems and frustrations are valid too, and I want to hear about them as much as you want to share, much like my frustrations in life also go beyond Talia to include banal things like the pain of making dinner every night, or the annoyance of being both my children's favorite playmate and cleaning lady! Basically, let's be friends just as we were before. Don't try to stick my life into a tragic and triumphant movie narrative, and I'll do the same for you.Q: What's challenging about writing?A: I'm still trying to figure out how to get my true voice in writing. I'm much more sarcastic in person (as I think anyone who has met me will tell you) and I've tried to apply sarcasm to this situation as well even though there is nothing funny about it. It does seem to work for me, and David, when we talk, but then when I try to write it down I sound a bit like an asshole. I'll be honest, there are time when I would rather sound like an asshole than a living saint or some other ridiculous image that we place people surmounting tragedy into (see, I'm an asshole!) I'm going to try and write down some more of my unfiltered thoughts in future posts.
Questions and Answers