Every now and again it hits me. It doesn't happen much anymore because Lily is working on walking and she talks up a storm and she's just so insanely smart and happy. But, there are times like now, that just the littlest of things hits me.
It took me an hour to get Lily to take a nap today. Not so unusual really, but now it's 3:45 and she still hasn't gotten up (that's going on an awesome 2 hour nap here, people!) And why am I freaking out? Because I need to give her her hydrocortisone which I was supposed to do at 3. Luckily she slept a little later this morning and I ended up giving her morning dose 30 minutes later too so I'm not pushing the limits here but it's still not something I'd like to mess with.
And last night, again the the hydrocortisone, probably since that one is given every 8 hours; I stayed up talking with my sister until 11pm. 11pm because I had to stay up that late in order to give her that dose. And it hit me hard last night, not only that I would be doing this for the rest of my life, every 8 hours, but that my sweet daughter would spend her life remembering medicine dose times and rearranging her life around those times. That maybe she'll have to wake up at 11pm to take a pill and not be able to get back to sleep easily. And not to mention, that I will worry constantly if she has remembered to take her medicine or not - but thankfully that stressor is not for a looooooong time.
I'm very thankful for the fact that when these times hit me they are more like a nudge to my heart and not a fall off a cliff kind of break down again. They just remind me that we're a bit different, that we deal with things others may never deal with. It's not so horrible, really, but it's something I could live without.
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We do the same thing! Tami gets up at 7am and sometimes he gets his meds at 7:30am...so I'll text her at 3pm if he is still asleep to see if I have any wiggle room!
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