It's the Little Things...

Practicing Breathing (who knew it was such hard work!)

We've had a pretty busy week around here.  Joseph has been in band camp, other olders working, and a soccer tournament.

Through it all, Aaron has been working hard too, on breathing.  This little man is doing about four hours off the vent in the morning, back on for afternoon, and another four hours each evening.  Mid-week, we also got some labs to tell us exactly how he's doing, if he really is doing well, or just compensating until he can get back on the ventilator.

He ROCKED them.  They were amazing!  They showed he was a bit tired, but this was also at the four hour mark.  So we keep moving, or we kept moving.  Yesterday, he didn't do quite as well.  We were gone all morning, so only did it during our two-hour stint at home early afternoon and then tried again in the evening.  He almost made it to three hours, but was needing too much suctioning, so I put him back on the vent early.

Hanging out on the soccer field, wearing
orange for his brothers' teams.

Last night, well, the nose started pouring forth.  This morning, he's gunky, tired, and we're back on snot watch with extra support in place.  It's been just over three months since he was last sick, and this would be the first time this year (2015) that he's caught a cold.  We're overdue, but it would still be okay if we skipped it.

Anyway, this week has also been a bit emotional for me.  See, when he gets sick, I get slapped upside the head with reality again.  This child is not "supposed" to live, he's "incompatible with life."  But along with sick comes a lot of things that need to be done for him.  So I stay busy.

This week's moments have been a bit more cerebral.  Make-A-Wish is a fabulous organization that grants wishes to kids with life-threatening conditions between the ages of 2 1/2 and 18 years old.  (Yeah, he fits in there.)  I finally got around to filling out a request form earlier and we got our approval letter this week.  

I'm so thrilled to be able to do this for him, but yes, it's another reminder, and that's kinda hard.  We're hoping that they can help us get a handicap vehicle for him.  As he's gotten bigger, it's gotten harder and harder to take him out.  And this little boy LOVES to get out.  He loves meeting people, seeing new things, but more and more, I'm finding I wait until someone else can watch him or run my errands for me.

Big brother plays the baritone in the band.

He's 45 pounds and doesn't support any of his weight.  Then there's all of his equipment.  And what's a slow process in good weather is simply dangerous in bad weather.  He and his equipment can be exposed to the elements for up to ten minutes for loading, and unloading.   (As a side note, because of the nature of his wish, Make-A-Wish policies won't let them fund it completely.  If you wish to help out, please contact me privately.)

So while this is a good thing, a wonderful thing, the emotions it stirs up are a tiny bit raw.

Alpine Days 2010

Yesterday, Alpine Days 2015

And then we had our hometown parade yesterday.  It's the good ol' fashioned kind.  Kids on bikes, local high school band, and lots of candy being tossed to spectators.

Aaron has been to every one so far, starting back as a tiny five pound infant, still not quite filling out his preemie clothes.  I love that he gets to go to these.

And I love it when I see our local fire department's eyes light up when they see him happy on the side of the road, instead of being loaded into one of their ambulances.

How come you're crying, Mom?

But what happened there was totally unexpected.  It was so small, so quick, I know I'm the only one who really saw what happened.

You know how it goes when you toss a bunch of taffy and tootsie rolls into a crowd with kids.  They run, scramble, try to grab it fast.  Smiles, laughter, and fun times.  But then, a kid, maybe eight years old? I don't know.  I really didn't get a good look at him.  He saw Aaron.

And he reached into the bag of candy he was passing out, came up onto the grass, and put three pieces in Aaron's lap.  I cried.  I cried again last night telling William about it.  And tears are filling my eyes as I write this now.  He saw him.  He noticed.  And he acted.

I have no idea who he was.  I don't know if he even remembers.  But I will.  I always will.  And I trust that God will note that act of compassion, of love for one of His little ones.  Such a little thing, a tiny deed, but such a tender mercy.

It has long been an axiom of mine that the 

little things are infinitely the most important.

Arthur Conan Doyle