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Some days…

Posted Feb 11 2013 8:58pm

Some days you just need to drink a bottle of champagne for dinner and call it a day. Today was that day.

All in all, it was a great day. I found many reasons to smile.

But in the end, I feel my kids were missing out. Our daily schedule is predetermined by breathing treatments and now feeding sessions. My attention is consumed by tracking foods, enzyme dosage, poop size and consistency.

Our entire family is consumed by a disease.

I could take a photo of my day planner, except I drank an entire bottle of Asti and am typing in bed. Written in today’s column:

Reschedule CF clinic
Call doc for refill
Drop off prescription at pharmacy
Follow up appt. at feeding & swallowing center 11:30
Build a snowman!

No joke, that’s exactly what’s written for Feb. 11th. And the one thing that is ticking me off more than anything is that I have still not crossed that snowman off my list – especially since Nathan has been asking to make one since the snow we had a few weeks ago.

It also pains me that I have to try and schedule “fun time”, stuff that should just occur naturally in childhood. But it seems something always gets in the way.

This afternoon I hadit all planned: feed 3rd meal then play in snow. Except this never happened. I did not anticipate having to fully disassemble his “feeding car seat” and disinfecting/cleaning vomit and kitchen floor.

By the time I finished this, because it had to be cleaned up by his 4th meal, it was too late and I was too tired to get dressed for snow.

So tonight, typing with one finger and one eye, I pray for a cold non snow melting day tomorrow. Because if I see one more photo of a child playing in the snow I may have to get myself committed because my children are missing out on a “normal” childhood.

If something doesn’t make sense, I blame Asti.

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