Preparing for Home

I am excited

and I am terrified.

Hazel Grace comes home today.

Isn't that what we've been waiting for all during these 5 longs months that she's been in the NICU?

Then why do I doubt and wonder if we made the right decision?

Was it right to have her undergo surgery to get a G-tube so that she could come home to us?

Of course, I know in my heart that it was the right thing to do.  Hazel Grace is being damaged more by staying in the hospital than by the surgery that she underwent.

But who am I to take on the responsibility of this little baby?

Hazel is coming home, and all who can rejoices with us and for us and we are happy.

But I still feel slighted.

Where is the joyful homecoming and the days snuggled up in bed with my bleary-eyed newborn nuzzling my breast? That is not to be.

Not that Hazel Grace is in any way 'less than'...oh no.  She much more than.

She needs more care than a 'regular' newborn.

She has more doctors' appointments than a 'regular' newborn.

She has tubes for breathing and tubes for feeding and lines for listening and feeling and detecting.

She has nurses for prodding and bottles bags syringes for washing sterilizing heating sorting filling storing

and my heart is overwhelmed.

How do we be sure to see Hazel through the tubes?  How do we be sure that Hazel is cared for, not just her tanks and tubes and buttons?

How will there be enough of me to go around?

I hear them say, these mothers and fathers of their tiny babies...I hear them say, half jokingly...

I wish these things came with owner's manuals!

No.  No you don't.

Because Hazel does have an owner's manual.

And it's not written by us, not written by a loving mother and a doting father.

It's written by strangers who see Hazel at a glance and reduce her to a tube or a button or a blood gas.

And we have no choice but to follow it.

So, as we prepare to take Hazel Grace out of the hospital and bring her here, into the warm, loving atmosphere of our house, and as I wonder how in the world anyone ever thought I was cut out for this job,

I sit and breathe just for moment.  Because sometimes, I guess, that's probably the best, if not the only, thing to do.