Reality is...

But Reality Is...
Physical therapy 3-4 times a week
instead of 3-4 times a day;
he'll probably lose all chances of walking
because of me.

Respiratory "thumping" once in awhile,
and only because Jeremy
likes to watch and he reminds me.
Catheterizing regularly,
because I live in fear of him
filling up with pee,
but it's time consuming -
I always forget a diaper,
the Betadine, the wash cloth,
or the cup to catch the pee,
so I can note the output.
But then I spill it,
or Jacob's leg kicks in spasm,
and he spills it,
or Jeremy dumps it
in order to be helpful.
Measuring his inputs,
his outputs, his head circumference
is an internal daily battle of will -
"they" want to know,
they they they, so many theys
I have to answer to - they want to know.

Feedings are every 3 or 4 hours
like they're supposed to be,
but it never seems as if he's hungry.
He doesn't cry for food,
and I struggle to remember
he needs to eat.
It takes an hour,
sometimes two and then he vomits.
Again.
More laundry.

Medicines are remembered sporadically,
and usually after he's asleep;
I remember the doctor's look,
as I contemplate waking up the baby -
neglect neglect, I just know he's thinking,
I'm a rotten mother,
cause I can't even remember
the damn thrush medicine.

Doctor appointments are met
only to be sent to another,
or back into the hospital.
Therapy appointments are made
only to be given more weird things
to do to him at home;
I have just tons of time, you know,
and how am I supposed to do all these things
to a baby who sleeps most of the time???
Could the plastic surgeon, the urologist,
the PT, the pediatrician, the OT, the heart guy...
could you all just get together
and let each other know
what you're asking of me and this one tiny little baby???
I have to, I have to, I have to -
Jacob needs to have the best chance possible,
but I hate it with all my heart,
even as I smile and make it a game
with Jeremy so he's not left out.

There is no time to be a family,
to laugh and enjoy anything,
because we're just scrambling
to get the basic needs met.
Jeremy "helps" - the only way
we get to spend time together,
is in caring for Jacob and his mountain of needs.
Jeremy's time with me
is when Jacob is asleep, so the laundry
sits and waits in vain.
We get our cookies done together,
but his "help" requires all my patience,
and I am very short on that.

And where there is time,
there isn't enough energy.
If I sit down to read to him,
I end up reading silently,
cause even my voice is tired.
And I don't dare make the beds...

cause I'd fall in. 
.