Watching Daniel Bloom

How do parents work with a sick child?

Posted on: February 3, 2011

I looked back today and counted the number of hours we spent in waiting rooms, doctors offices, hospitals and therapy rooms in January, and the total was over 30. That’s not including travel time either…if you add it all up, I would estimate that we spent about 40 hours in total.

40 hours – that’s a full work week. And we’ve only just begun. All I can do is thank God and the heavens and the angels that I work for the company I do, in the role that I do right now. My employers have been amazing – so understanding and caring, and offering to do whatever they can to help, including providing whatever time off I need.  On top of that, my schedule right now is 4 days a week, and they allow me to adjust the day around appointments. I am so, so fortunate.

But all this makes me wonder – how on earth do parents manage when they have chronically ill children? I cannot see how you could work a “normal” job and deal with the demands of the healthcare system. A half-hour appointment is inevitably a 3 hour minimum commitment, when you take into consideration the hour you wait before getting into the office in the first place (I don’t understand why doctors are the only profession where it’s accepted that they simply never take patients -aka clients – on time), plus driving time and adjustments for naps etc.

Beyond all that, I know that there have been many days when I was physically in the office (at work), but my head and my heart were far, far away. How can you possibly focus on work when you’re worried about whether your child is ever going to speak, have friends, care for themselves, and live a normal life? The answer is simply – you can’t.

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