Rare is Precious

Henry has been so, so tired lately. His sleep seems to be getting longer, his days shorter. He spends most of his time on the couch, nibbling and watching his shows, humming to the songs or answering the questions posed by the characters. He is sometimes coaxed into an errand, a painting project or some other off-couch activity, but he fatigues quickly.

Each night when we put him to bed, it seems like we're turning a page in the last chapter, nearing the end of the story. I feel like my kids asking for another book. More. Please more.

The reality of this is becoming more palpable by the day. Our visitors are more frequent, our conversations more urgent, our plans more tangible. In so many ways I feel like we're losing him slowly even now - his body is getting heavier with his eating, hiding his features behind his increasing cheeks. His occasional hobble toward the bathroom is practically his sole exercise. His nap schedule is more regular and lengthy than it has ever been. None of this is typical of childhood. His mental acuity remains in tact and he jokes and his wit is sharp. We feel lucky that his disease has been merciful to us this way.

When you were born, my love
A bag of precious gems were poured out to us.
Although they seemed innumerable,
we knew they were not, but refused to count
for they seemed so many and days so plentiful.

As they dwindle, my love
and as I am able to count them - shimmering in my hand,
and am forced to pay out,
one at a time,
to the passing sun,
they seem all the more precious, my love.

I watch the way they reflect the light,
How each is unique,
special, different.
I see my face in the reflection, my love.
And I hope always to find yours looking back.

One day soon,
the last sun will rise to collect its toll.
And I will reluctantly, sadly,
with an open palm
give over what was never mine,
but only lent for too short a time, my love.

I will miss you,
but will reflect lovingly on those gems
that we had the privilege to care for,
to witness and to tend.
For each of those gems have left me richer
than I can have imagined otherwise, my love.

For now, there are but precious few, my love
remaining in our care,
and while we wish for more, my love
We're ever so grateful for the one that is today.