Daily Archives: January 18, 2011

Second chances

The phone rang around midnight. I was already asleep. I jumped up  and stumbled around in the dark, looking for the phone. It had stopped ringing by the time I found it, in the computer room. I peered at the number, blurry from sleep and lack of glasses, it was difficult to make out – but I could tell it wasn’t my Hub calling from work. They didn’t leave a message, so I figured it was a wrong number.

I headed back to bed.

Carrying the phone with me, I checked on the babe. David would need to be fed soon, every 3 hours meant micro naps throughout the night. The other boys were sleeping snug, so I crawled into bed and faded away.

Until the phone rang again at 2am. This time I struggled to find my glasses and before I could pick up, a voice came over the answering machine “Mrs. Hillis this is so and so (because I honestly don’t remembered who called) from Cincinnati Children’s, I’m calling you about David, we think we’ve found a liver…..

That woke me up! The next couple hours are a blur – I packed – scrambling to find clothes from the pile in the hamper – being August, it was hot outside, but from experience I knew the hospital would be cool – where’s the winter clothes when you need them? Random things shoot through you mind – food – do I have any food to bring? – books? – what books do I want to bring? – movies? – toys for David? – iPod? – cash?  toothbrush? I knew we’d be away for at least 2-3 weeks, so I wanted to make sure I had what I needed.

I called Hub at work and said this is it – come home now. And then I sat down and cried. This was it – they had a new liver, the surgery would go down later today – within 24 hours, issues with the citrullinemia would be gone, replaced with whatever transplant obstacles we would face.

This was it.

Somewhere a family was in mourning, because their child had died. Their selflessness in the face of tragedy meant my son would have a 2nd chance at a normal life. For them I am forever grateful.

This was it.

Breathe deep.


This was it.

David and I left for the hospital, we made it there by 5am. They got us admitted and settled in a room. Familiar faces stopped by and chatted with us. We had spent so much time amongst these folks, it was like a home-coming. By 1pm, I had kissed Capt Snuggles good-bye and they had whisked him off to surgery.

This was it.

No going back now.

We waited 13 days from the day he was officially listed for transplant. 13 days is such a small amount of time to wait. Of course, I was worried. Not for what I didn’t yet know, but for what I did. Jonathan and Zachary had had such different post-transplant courses, both from each other and what’s considered ‘textbook’, that I could only begin to speculate on how well David would do.

And he did well, no surgical complications. He floated through 2 days in the PICU and nestled himself snuggly on to the ‘floor’ and into everyone’s hearts.

We were home.

Now, 5 months later, we’ve settled into a new home. The PICU. Of all the current patients in the unit, David has been here the longest. I’ve joked about being incarcerated here, but it is very much like a prison sentence. Sometimes with no hope of parole. We’ve had scary days and quiet days.  Up days and down days. We’ve made friends here and he’s got a cheering section – extraordinaire.

5 long months ago we arrived with the hope of a normal life. It’s been anything but. My hope for a normal life is gone – in it’s place it the hope for a life. Period.

Deep breath.


This is it.

There’s no going back now.

Categories: Life | Tags: , , , , , | 14 Comments

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