On my worst days I often think I should have just stopped after William died.

It’s not that I regret for one minute having Ivy and Noah.

I feel very blessed that they are in my world.

It’s that she would be spared this part of her life altogether.

All of the medical procedures 

and the trauma

and the knowledge that she is in some ways different to other children.

When she was untethered from the burden 

of the pump

and the medications

it was as though she were lifted.

Lighter somehow.

Ivy laughed a lot that first weekend

and she played.

*Really* played.

It had been raining and the yard was sloshy but during the brief periods of 

sunshine she and Noah raced outside and dug in the earth 

and jumped on the trampoline

and climbed onto the fort -

their own private pirate ship,

where they sailed the oceans and cried “land ahoy!” so many times I dreamt

of islands and treasure maps that night.

Noah was in brother heaven, having Ivy by his side

because before her freedom she rarely escaped outside,

limiting herself to make believe inside games of fairies and Barbie.

Too heavy.

Too chained to the external displays of her illness.

I marveled at her energy

and watched her running with her brother, 

mud flicking up in all directions,

face to the wind.

Her laughter, infectious.

I assumed I had tucked her in tight enough, so as to protect the line;

Singlet into tights

the minimal amount of skin exposed to the weather

but clearly not enough.

The bugs that have grown in her line are commonly found in dirt.

The infectious diseases doctor insinuated I had been inadequate in

protecting her.

He need not have said anything at all. 

I am very good at self flagellation.

It would not even be an issue if she were not immune compromised

it’s just

her little body can’t do the job it’s supposed to

and she is only five.

It’s in her nature to want to play, when she feels good

and she should be allowed to.

I failed her.

I can see it in the doctors eyes

and in the nurses.

I need to do better

and for me to be able to do that

I think it will mean her childhood will be robbed of the outside experiences.

The mud pies, 

the digging and discovery of unusual rocks 

and interesting plants

because, try as I might, these pathogens keep finding their way to her

and maybe I think that those limitations

are better than a childhood spent in a hospital isolation room

because when you are in hospital 

it feels as though you barely exist at all.