Moving on

Ana's last day at Abeona was Friday.

*sigh*

Elliot's last day will come at the end of July.

We had a ceremony where kids asked that we not take their sunshine away.

*lump in throat*

That night, we went for sushi, and Elliot discovered Shrimp Tempura, Oliver enjoyed his muse of noodles, and Ana relished her California Rolls. And Kevin and I held hands over hot tea, and came home trying to catch frogs under the crescent moon, and wondered at how quickly our little ones have grown.

Again and again, how many times will we have this feeling? This sad longing at these moments passing by?

Mental Illness

The disease I can't see
and still don't quite believe
I just find you belligerent and frightening and sometimes evil
when I'm not feeling completely
numb and cold
and denying I ever loved you.

I am struggling right now
to give shape
to your future care
when I really don't care
about you at all.

If I could...
well,
I can't even say.

I wish you could
remove your grip
from our hearts...
you're killing us all,
and I still don't quite believe
that something is killing you...

Drop you off
in the middle of a dessert
sayin leave us alone
with no phone
and see you in the afterlife.

Asking Science for a Refund

On our recent trip to the opthamologist, who after another 2+ hour wait remains confused about why Elliot's eyes made such a dramatic downturn three months post-op, we were encouraged to have another MRI done.

And exactly WHY would I subject that child to another MRI?
Deny him food, put him under, and have him put in a machine that makes the smoke monster on Lost sound sheepish because he might have some kind of flare up that causing these changes?
Can you DO anything about these changes?
Can we prevent these flareups?

If you're just fucking curious, you'll have to poke around on some other CMV kid, because my child is not a science experiment, and we have not donated his body to your cause.

Why can't doctors of children with a host of specialists coordinate care and actually TALK to each other? A quick call to his Infectious Disease doc and/or neurologist would tell him all he needs.

So what to do now? I'll wait two weeks (and hold my son down while I put on his glasses), then wait two hours to see this doctor again, and ask him if he thinks my son has a brain tumor or some other legitimate reason for an MRI. And I'll wait to see him again because I have no choices on who to see. He is, all at once, the best and worst doctor in the city.

8 months

Ollie is 8 months today
and I don't have the pictures
and can't pull together the words,
my heart is full.
My children, my treasures.