Our darling baby

with blue eyes

with golden hair

with ivory skin

with your scent

You may not move,

Like other kids do,

So we will be your arms and legs.

You may not speak,

A typical language.

But we understand every word you say.

At night

I stand over you.

Patting your back,

Rocking you to sleep.

In my selfishness I want you to awake.

In my selfishness I want to play with you more.

In my selfishness I want to hear you say you love me,

One more time.

We're tired.

Exhausted from loss,

Bitter of people.

We're tired from fighting with others,

Convincing THEM life is sacred

And you are worth

What it takes

To keep you

alive!

People move slowly

To deliver the things you need

But time moves ferociously

Eroding our life together

Shut up!

You've got what you want

Go away.

But we will not

Go Away!

We have learned,

Life is sacred!

-by Brad Fisher (Father to Shira, SMA Type 1, 3 years old)