August

August is quite a month.

It is Makayla's birthday month.
It is Annabelle's birthday month.
It is SMA awareness month.
It's a month we're talking "off" from the world.

Before I disappear for awhile, I thought I'd leave a few comments on each of these things...

Makayla, sweet Makayla, will be 3 next week.  I can't believe that I've had 3 whole years of the joy of motherhood.  She has become quite independent, creative, and compassionate.  I love her with my whole heart and I am so grateful to be her mom.

10 days after Makayla turns 3, Annabelle should have turned 1.  This moment was so blissfully happy.

My heart is broken and I ache for her.  I long for what could have been...and yet I am also reminded that, had Annabelle been with us today, there would be no walking, no crawling, no care-free happiness that I imagine.  Annabelle had SMA.  And she would have had it today, had she lived.

I have wavered back and forth over the idea of awareness.  Awareness for what?  Awareness' sake?  What would have changed had we known about Spinal Muscular Atrophy before Annabelle was born?  What would be different if the world knew about it?  Even with all the support in the world, science is far from a cure.  And besides, how many eyes is this little post reaching?  Maybe a few people who, by now, have probably already heard (from me) those 3 seemingly benign letters: SMA...

But I don't think it really has much to do with finding a cure.  Or even about SMA.  We go about our daily lives, generally unaware of what others are personally struggling with.  We may hear the news, scroll through the FB and Instagram feeds, get a surface understanding of what people are up to today, and wish people would stop sharing viral videos or sad stories and just post a pretty picture (maybe that's just me).  But they're out there.  Real, deep, weeping wounds.  Not fleeting woes.  Scars that last a lifetime.

Look around.  You'll see them if you pay close attention.  They might be hidden by smiles - have you ever noticed a family at Disneyland pushing a wheeled contraption containing a child who is propped up, hooked up, obviously disabled?  Why are they smiling?  It's outrageous.  And yet there they are.  Because that is their life.  Don't pity them or avoid eye contact because it's weird.  Lift them up in prayer and thank God above that they are willing to do what it takes to make a life.  And it might even be hidden altogether.  Go look at pictures of Annabelle on my FB page.  Would you have any idea that she was dying?

Look at her beautiful face and remember her.  And then be kind to people.

That leads me to the last point.  We need a break.  I need a break.  We've been plugging along reasonably well.  But in some ways we've acted like nothing has changed.  Our family has changed.  Our church community has changed.  And we need to pause, acknowledge all that has happened, and take a breath.

So I'll leave you with the hymn that I've been humming all week.

1. Be Thou my Vision, O Lord of my heart;
2. Naught be all else to me, save that Thou art;
   Thou my best Thought, by day or by night,
   Waking or sleeping, Thy presence my light.
3. Be Thou my Wisdom, and Thou my true Word;
   I ever with Thee and Thou with me, Lord;
   Thou my great Father, I Thy true son;
   Thou in me dwelling, and I with Thee one.
4. Riches I heed not, nor man’s empty praise,
   Thou mine Inheritance, now and always:
   Thou and Thou only, first in my heart,
   High King of Heaven, my Treasure Thou art.
5. High King of Heaven, my victory won,
   May I reach Heaven’s joys, O bright Heav’n’s Sun!
   Heart of my own heart, whate’er befall,
   Still be my Vision, O Ruler of all.