He Has No Voice In It

I've been known to voice my opinion
to hear conflicting voices
to be deaf to the voice of God.
On rare occasion, to cry my voice hoarse
but more likely to laugh it so.

But which voice to follow now?
When the one it most concerns
has no voice in it.

He yells a little neigh as he prances by on his "Beauty Horsie"
He laughs a guttural, bubbly, shrieking joy
He sings he sings
He says, with soft intonation, "My love you Mama".

I've come to know that nothing will take the song in his heart,
but oh, it would break mine to take the songs from his lips "forever".

8/16/2010

April 28, 2010, Pt. 2

All Things Fall

Autumn leaves, of course

helium balloons, eventually

two-year olds

all mankind

tears

In the Oklahoma spring breeze,

today it was the fresh white blossoms

from the honey locust trees

small branches from the large old maple and sycamore trees

and my two-year old’s hair

He grabbed out handfuls, with a strange ripping sound,

his eleven –year old brother reported,

as they played on the trampoline

and the wind took the soft baby blonde sweetness away,

mixed with the white blossoms in the breeze.

April 28, 2010

My baby started losing his hair today.  Hannah cried.  I’ve sort of . . . almost, here and there.  And why?  I have been previously annoyed by people saying, “oh, will he lose his hair??” as if that even rates anywhere of remote importance on the scale of what is lost.  Doesn’t rate with the risks of life-threatening infections, permanent hearing loss, heart damage.  Doesn’t rate with endless needles, with worried brothers and sister, with not letting the dog play with him for fear of licking, with not letting him go to his Bible class, which he loves.  Doesn’t rate with middle-of –the-night ER runs for 101 fevers.  Doesn’t rate anywhere with an inoperable tumor that’s growing, again. 

But my baby started losing his hair today, his beautiful soft blonde baby hair (Hannah cries, “but it’s so soft, and I like it, and it makes me sad for him to be bald”) and I feel a bit weepy. Perhaps, because now for the first time he’ll look like a kid with cancer.  As a baby, his hair loss didn’t give him away, and he was just such an energetic, happy baby his overall appearance, if you didn’t see the tube hanging out of his chest, was of a perfectly healthy, though perhaps a bit pale, child.  But now, he will look more like the other precious children at the pediatric cancer clinic.  His hair falls out, and he is looking a bit peaked, with little purple circles peeping up under his eyes.  The little warrior of mine, the bullet-dodger, can’t quite evade all the results of what he has to fight.  So mom is a bit weepy, and after all, Hannah is right . . . it is so soft, and so beautiful. 

About Time?

I just did a new thing . . . 2+ years after "neuroblastoma" was added to my vocabulary, I finally added it to my computer's dictionary.  For 2 years and nearly 2 months, every time I typed that word, it appeared with red squiggles underneath it . . . which was ok.  After all, "IT" doesn't belong.  It is wrong, in a way far worse that mere misspelling.  But perhaps it's a stage of acknowledgement, that we will, after all, have to walk along with this intruder for some time to come, that its marrings it leaves behind may perhaps be with our boy forever.  It's not "giving up" or "giving in", but maybe just grudging acknowledgment that this enemy (to personify a mere disease, something I shrink from doing, but merely for a figure of speech . . . ) is one that we will dig our trenches down and fight, perhaps for some time to come.  So, ok, I'll add "you" to my dictionary, if merely because I do hate those red squiggles.