Heather touched on this topic briefly in a previous post but I think it's worth talking about in more detail. It's unbelievably hard to answer people when they ask us "How is Eliza doing?" - or worse, for those that we haven't talked to in a while, "How are the girls doing?", "How are the babies doing?", or even "How is the pregnancy going?"
From so many people, this question seems intended in the same spirit as "What's up?" or "How are you today?" - no real honest answer is expected, rather a "Fine" or "Just great, thanks" is the norm. I've caught myself giving this kind of answer by reflex (mostly to near-strangers), but it makes me feel terrible afterward - I feel like such a liar for having said such a thing.
How much honesty is too much, though? When those who are reasonably up-to-date (co-workers, friends that we see regularly, etc.) ask, we try to give a bit more detail - "Eliza is having a good week, she's breathing well and they're increasing her food every day to get her to gain weight" - but even that is painting perhaps an overly optimistic picture. Sure, she's breathing well but they're concerned whether the CPAP mask is damaging her skin and lungs, they're increasing her food every day but they're concerned about the increased food input overloading her already compromised digestive system or possibly even causing NEC, her weight gain isn't as consistent as we'd all like (over the last two days she's lost 70 grams, for example...) we're concerned about the amount of hydrocortisone that she still needs on a daily basis to keep her blood pressure up and her kidney function strong................. but geez, if we answer an innocent question like that with all of the current issues, concerns, and fears that she still has, we're sure they'll never ask us again! They don't really want to know all that - they just want the good news, the rosy picture, the optimistic viewpoint, right?
It gets even worse when we're talking to someone who doesn't know about recent events (or not so recent - Charlotte died a month ago tomorrow...!?) - when someone asks "How are the babies doing?", when we break the news about Oliver and Charlotte, we can see the listener crumple, and we feel compelled to add "But Eliza's doing great so far!" or some similar upbeat conclusion just to offset the bombshell that we just dropped on them. Cause really, who wants to be responsible for completely shattering someone else's good mood?
It's very isolating, to be honest - it feels very difficult to talk openly to anyone else about how things are really going. We feel compelled to put on a brave face, to describe the situation with an optimism and generalization (or even distance) that we don't really feel. We know people care about us, but there's so much that we have to feel, experience and process every day, and so much that changes for Eliza each day, that it's simply not possible for us to explain in a few sentences to anyone who isn't already immersed in the situation.
At least the other parents in the ICN mostly get it. When we ask one another "How is baby X doing", the response is always appropriately qualified when it's good - "She's having a good day so far today" or "He's healthy and comfortable at the moment". They at least understand, as do we, that there's always storm clouds on the horizon, and things could change for the worse at a moment's notice.
Thanks for keeping us updated on the blog! We definitely want the long, honest answer but haven't wanted to call and email all the time when you have more important things to worry about than updating us. Please continue to keep us posted and if you want to give us the long complicated answer, we're here to listen. We'll be praying for Eliza to improve and grow with fewer and fewer complications each day. Shelley
ReplyDeleteGimme the real answers, when you have words for them. When you don't, just gimme the tears or the silence; I'll give you a box of kleenex, a shoulder to lean on and anything else I possibly can, to ease your woes.
ReplyDeleteI think even just a shrug as an answer is enough, at least for me... the question is more of an opener, an invitation in case you *do* feel the need or desire to share anything (good or bad). We're here for you in all times, not just the good ones.
I have only a fraction of your worries, with Ella. I put similar qualifiers on her status at times. While I don't wish any parent these experiences, I hope that helps me to understand a *bit* of where you're coming from, and I know that sometimes you don't have to explain or answer anything; that in itself will say enough for me. I hope you're allowing yourselves the opportunity to let it all out once in a while and in front of more than just each other or immediate family. You shouldn't always put on the strong front, even at the risk of alienating people whom you think just want the rosy answer. Why should their feelings be more important than yours, especially with all that you're going through on a daily basis?
Love and hugs,
Lissa
It is so kind and loving of you and Heather to share your hearts with us. You both have such a beautiful way of expressing the joys and sorrows of walking with your little ones through these difficult days. You continue to continually be in our hearts, thoughts, prayers. Just wish there was something more I could do to make all this easier for you... With love, Aunt Pat
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