Last week, Taylor, my daughter who has MPSIIIB, caught a cold.  Not a problem. At least it seemed that way.  Then over the next couple days, she was not herself.  Made it through the last day of school and then a  little extra sleep.  Saturday, she seemed to be a bit better. Then Sunday, she awoke with a terrible cough and was extremely lethargic. And I kept thinking…

Oh no. It’s our turn.

You see, since Taylor’s diagnosis way back in March 2001, we’ve known this day would come.  The first pneumonia.  Most likely not the last.

Not to be morbid, but when your child has a terminal illness that is marked by a typical lifespan of ten to fifteen years, then each day, a part of you holds your breath wondering if this is the day.

The day that we mark as the beginning of a deeper physical regression.

Or the day that our sweet girl graduates to Heaven, where her frail body is made completely new.

On Sunday, I told my husband that while it seems crazy, I am concerned about whether Taylor’s cold could turn into pneumonia.  And by the time we made it to the doctor Monday early afternoon, the diagnosis: walking pneumonia.

We’re lucky she’s not bedridden. Yet.

So how do we cope with this long, gradual suffering for Taylor? And for us.

We simply accept that on this earth, everything is not understood by humans.

We trust God; we know He has a particular plan.

And those statements are not trite.  We live and breath them every day.

Mostly we try to live every day to its fullest potential. Be thankful for every moment, good and bad. Treasure the joys.

Because the truth is:

None of us know how much time we have on this earth.

Let’s make the most of it.

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