My Usual 5am Wake Up Call

No matter how hard I try or what sedative I take, I can not sleep past 5am when Zoe is in the hospital and I am at home.  If I were there with her, I could sleep past 5.  When I am with her in hospital I still wake up, but after seeing her sleeping, I then drift back to sleep.  It is impossible to get a good rest when your baby is in hospital.

Zoe is having a hard week.  She is in the intensive care unit on a breathing machine.  She has not needed this much medical help in four years.  We are scared.  We are exhausted.  And despite all the people around us, we feel alone.

We turn toward the 1p36 community at this point because we know we are not alone.  There are many (too many) parents that have gone through this with their 1p36 kiddos.  We know this.  But there is a scarier fact floating out there in the 1p36 community that does not comfort us.  And this is that fact- 1p36 kids die like this all the time.  Children who are more severely affected (like Zoe) get sick, end up on breathing tubes and never come off.

We try to shrug off this reality.
We try to shrug off our fear.
We try to shrug off our heartbreak.
We have to do this in order to get through our day.

Our day will be long.  Our day will be heartbreaking.  Our day will lead to a million thoughts about the decisions we make for Zoe and what is best for her.

The house is quiet.  Ailsa, Willow and Gavin are sleeping.  For the first time ever in Zoe's life Gavin and I both came home last night to sleep.  Zoe is unconscious right now.  We sit by her bedside, hold her hand and talk to her.  I know this makes a difference.  I know she can hear me.  But her being sedated like this makes us pause and look at the reality of our limitations.

This is not our first rodeo and I know it will not be our last.  We are in this for the long haul so we have to take care of ourselves.  So while Zoe's body gets the rest it needs in order to gain its strength, we are going to try to get some rest too.  We have to force ourselves to leave her at night and get some sleep.

Because I know that my little girl is going to wake up in a day or two, pissed off and agitated at her situation and we need to have the energy to keep on fighting with her.  Day after day.

To quote a popular song, I know that if Zoe could speak right now she would tell us:

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me