Wednesday, May 31, 2017

A Work in Progress

A couple weeks ago I got together with a bunch of other heart moms for dinner.  And a painting activity.  Talk about outside my comfort zone.

You should have seen her painting, the one we were supposed to recreate, more or less.

As we started painting, (and it was just the background) there were a lot of depreciating comments, and I recognized the mutterings around me echoed what I was feeling too.

No way I could make something like that.  Even the background wasn't turning out like she had it, and we hadn't gotten to the "real" painting.

But I was feeling a bit dark myself, and rebellious, and maybe not in the best place for feeling down on myself, or letting my friends put themselves down either.  So I said, "yeah, well, that's why she gets paid for this, and we don't.  But I bet she doesn't know how to hear a heart murmur, or tell if a kid needs more oxygen, or what to do when they do."

And you know what?  That's okay.  It's good that she can do what she does, and it's okay that we don't.  But our kids rely on us to do what we've been taught, and this was supposed to be a night of relaxation, or maybe discovery.

Her painting was a lot lighter than mine, but I wasn't feeling "light" at the time.  I made the sky dark,almost foreboding.  I was feeling it.  But then my words came back to me.  It wasn't all that way, and it wouldn't stay that way either, so I added in some lighter tones, just up in the corner, a bit of hope peeking through.  And you know, as I painted it, I was already thinking, "If I did this again, I would do it this way instead of that."  "I would make this line different, put that in a little bit of a different place."  And maybe we do the same thing in our own lives.  "I would say that different, I would go there instead, or maybe not go anywhere."  And that's okay, too.

There wasn't a single painting that looked exactly like hers, or like any other one.  But I can also say, I loved all of them.  They were all somewhat similar, a tree on a foreground with hearts, tones of reds, blacks and whites.  Kinda like all of us.  All of us in the room were bound together by hearts, hearts that weren't "perfect."  For some, it was our own heart, for many others, our kids.  We're on a journey we couldn't have known about before, but we embrace it, the fears, the joys, the triumphs and the sorrows all the same.

In the end, although I saw things I might change, I was pleased with my efforts.  And on the way home, I turned up my song loud, and sang it at the top of my lungs.

It's a work in progress, and so are we.

And Aaron, he's progressing, too.  The only thing we can come up with is that the cold he caught just over a week ago exacerbated both his asthma and his pulmonary hypertension to the point we couldn't help him enough at home.  We think we've turned the corner and are watching today.  It's been concerning for both me and the staff here that he has stayed quite high on his oxygen around the clock, whether awake or asleep, and he's slept a lot.  He's consistently needed 11-12, and sometimes a little more, liters of oxygen.  But early this morning we were able to wean him down to four liters, something very doable at home.  He bumped a little higher when he woke up, but he's still looking pretty good.  So we're hopeful that the end of this stay might be in sight.

Unless I accept my faults I will most certainly doubt my virtues. 
~Hugh Prather


  1. This is a beautiful analogy for the life of a SN mom. Thank you.

  2. Yours may not have looked like hers, but her hand also didn't instinctively reach to hold a friend's hand while she cried for the daughter she missed and keep on holding on until that friend was ready to let go.

    We all have talents. I love yours.