We went to the festival at the kids’ school yesterday afternoon.
A mom that I have known since Ethan was in Kindergarten with her daughter (he is in 3rd now) asked me about Hannah. “How is she doing?” she asked me. She knew about Hannah’s condition, so I knew she was interested in more than “just fine.”
I found myself wondering, again (as I have had this conversation with myself quite a few times lately), how do I really answer this question?
When one of her medical team asks me “How is she?”, well, it is very simple to answer because I can give them to truth in medical jargon and that is what they want to hear.
But I really don’t know how to answer when someone like an acquaintence or even a friendly acquaintence asks me that question. I can’t say “She is doing great,” because she is not.
I don’t want to list the current issues we are dealing with by saying “Oh, well she is on a liquid diet now because she has swallowing dysfunction and weakness in her throat and vocal cords. Oh yeah, and there is the hypotonia so she can’t walk yet and has trouble using her muscles. Can’t forget the significant global developmental delays that she has, for which we have 5 different therapies a week. Then there is the significant dysfunction of her eye movements where she has difficulty moving them not only up and down but side to side. Lastly, there are about 15 other symptoms that she has with this disease that we are still trying to balance her quality of life with…” Can you imagine the look on their faces?
I don’t do pity well. I don’t want to tell them how difficult it has been and all the issues we have had to deal with. But then again, candy coating it really defeats the purpose of trying to create awareness for this disease as well.
Where do I draw the line? What should I say?
I answered her with “She is doing better than anyone expected.” Which is true.
Such a simple question to ask… such a difficult decision to answer…
I could’ve written this post, Lady! Depending on how I am feeling, which I’ll admit had been a bit down recently, I’ll answer, “he’s still here!” usually accompanied by a smirk.
No one ever asks a follow-up question (which is what I want–I am still bad about talking about it since he’s technically regressed and we don’t even have a freaking diagnosis!).
I figure, they can fill in what they think I mean by it: “he’s beating expectations” or “he’s surviving”. Sure, it shifts the awkwardness from me to them, but then again I never said I was a nice person. 🙂
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I also could have written this exact same post. Its one of my most hated questions, especially when asked with pity. I usually say, “Well she’s alive and I will take that any day!” and then I add on something that will paint a picture “We changed her seizure meds and she is now saying about 15 two sylable words a day.”
I think your response was perfect Carrie. It’s not that people don’t care, and it’s not that they are being flip, they just don’t know a better way to phrase the question.
You aswered it great. My answer always depends on the mood I am in or what level of stress I am at that day. So they could get “Oh fine” or a laudry list of problems, diagnosis, and tears. You did great.
I also think that your answer was a good.
you can always say, “we have good days, we have bad days, and we are making each day the best we can!”