What is life about?

It starts out so carefree,

playing in the woods,

building forts out of vines.


Even young love and starting a family

Put stars in my eyes.

I had the whole world ahead of me.

I was ready to take on the impossible.


What glory there was in giving birth to new life.

My beautiful baby boy.

I knew that I could do this, I loved him so deeply.

I could create a world of wonder and awe for him.


I even prepared a room for him with every cloth diaper

Machine embroidered with colorful threads.

I was twenty-one but looked sixteen,

Others wondering what this teenager was doing

With a new baby.


My son was only a couple of months old

When he became a failure-to-thrive infant.

The doctor told me that he needed nutrition

From a bottle so that it was easier to suck.


Formula didn’t agree with him,

He became constipated and was in

A lot of pain.

I learned how to nurse him so that he got

Enough nutrition.


When this beautiful boy grew up

He was diagnosed with a Rare Disease,

Myotonic Dystrophy (DM)

He was twenty years old when I learned why he was

A failure-to-thrive infant.


I had put one foot into the door which is life

As well as death and was not afraid.

Every step of life was a miracle

I experienced putting my foot in the door of death

And was overcome with amazement.


I wasn’t prepared to live in a world with its

Harsh need to change me.

Yet, I learned how to melt into the fierce heat of living

Saying “this is where I stand”.


Are we willing to live day by day

With the results of love

And the bitter passion of defeat

And still find amazement?



Lines inspired by Mary Oliver and David Whyte