Every hour on the hour and sometimes in between.



This Parker’s daily schedule.  Notice the times of his bolus feeds.  The times of his medications.  How often he takes meds.

From about 11:00 a.m. it’s pretty much every hour on the hour……..and sometimes in between.

That doesn’t include the homeschooling.  The therapies.

And you should see us when we have to go some place.  We carry it all with us to keep us on schedule.  Because once we get off schedule there really isn’t any getting back on it.  I have a timer I set because an hour can go by in a second.

It’s a lot of work.  I won’t lie.  There are days that all I want to do is roll over and pull the sheets over my head.

I get into funks.  I get worried.  I get scared.  I want to much to take this kid into the world and show him off.  To allow him to be as full immersed into life as his brothers and sisters are able to be.

I want to live life without the fear of Parker’s Pulmonary Hypertension getting worse.  Did I mention we see cardio next month?  sigh.



I know for now  the decisions we’re making are the best for Parker’s health.  Even if it seems as though we often take one step forward and three steps back.

It was a rough summer.  Ulcerative Colitis.  Significant hearing loss.  Just when I think it’s safe to take him to school for a few hours, or on a new adventure, the damn snot is back.  Lots of it.  Too much to take him out anywhere.  His poor face is red and chapped despite all the creams we’re keeping it slathered in.

I tell myself that it’s okay.  It’s still so hot.  Soon it will be cooler and the snot will clear up.  Until then we’ll keep working in Parker’s classroom and on his iPad.

Parker’s spirit is great.  His will is strong.   It’s his Mom who is often weak.


This Hero is blazing his own trail and I need to start keeping up.  I have some very large spiritual footsteps in which to follow.




One Response

  1. brandiguarino
    Sep 6, 12
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