Natedlee

Great question, and sadly many disabled families also don't react very well. We carry business cards around with information about Emily and SMA on them to hand out in these situations. Honestly, sometimes I'm just not ready to talk about it b/c of a bad day, fatigue, something else - so I hand them a card and smile. If they are just standing there open-mouthed and staring I will often say hi and ask them how they are doing or if they have a question. Sometimes they do, sometimes they don't. :)

My wife pointed out that I answered how "we" respond -- that's what wife's are for. :)

So, to answer your question, "what is the best way to act....?" "what is the best way to recover...?" -- Very few people spaz out. The most frequent thing we see is a child incredibly interested and asking questions then their parents whisk them away scolding them for bothering us. We LOVE the inquisitiveness of children. They are accepting of Emily in ways that put adults to shame, and we WANT them to ask questions. I'd err on the side of letting your kids ask and explore. The last thing we want is to scold our kids for using their brains.

If you happen to spaz out, not sure what that would look like, recovering is as simple as being genuinely interested. Maybe they need help opening doors (amazing how often people watch me struggle with doors and never offer or even think to help. Ask what condition is. Smile.

You're the first person to pick up on that! Although it was heavy, it provided a much easier way to skate. ha.

Thank you very much - and all the best to you and yours well!

Great question! We are part of a Parent as Faculty program where pre-med students come to our house to learn about our life. Those that take advantage of these opportunities consistently report that it was the most valuable part of their medical education. If that's not available, seek out experiences like this. You will learn FAR more seeing kids like Emily in their normal environment vs only at the worst of times in the PICU.

Also, listen to the parents of disabled children. They have a 6th sense that you will never be able to explain.