Transitioning Out of the Hospital/Redefining "Normal"

• We Went Home At Night
• I'm Empty-Armed
• You Have to Adjust
• Where Do I Go From Here?
• A World Where Nobody Understands
• The Routine Suddenly Stops
• It Hits Like a Ton of Bricks
• Emotions and Feelings
• A Struggle
• Mothering Her
• Time to Let Go
• Sometimes We Forget the Simple Gift

We Went Home at Night

When she died, we went home at night on purpose, instead of during the day.  We didn’t want any of the neighbors to see us driving in.  We had such a great neighborhood that was so connected but we weren’t ready to talk to them.  How do you ease back into that?  It’s tough.

-Mother

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I'm Empty-Armed

The immediate days and weeks and months after she died were full of feelings of shock and loss.  Suddenly I’ve got nothing to do.  While my daughter was alive, I was running around like a chicken with my head cut off taking care of an infant and a two year old.  Now all of a sudden I’m empty-armed.

-Mother

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You Have to Adjust

I remember saying to my oldest daughter before Jackie died, “I’m worried about losing my sense of identity,” because I am the mother that looks after Jackie all the time.  I’m a violinist and I do other things, but all of that is shaped by Jackie and what I need to do to look after her.  So of course, now Jackie’s gone and that whole space has opened up.  You have to adjust.  You have all these hours which were used to think about and look after Jackie.  You’ve got to think about what you’re going to do with those hours now.  The whole idea of thinking about Jackie is gone.  It was taken away from me and it leaves an empty space.  You have to somehow redirect that.

-Mother

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Where Do I Go From Here?

I gave up my job in 2000 and I had some of the same issues as my wife.  Where do I go from here? My life is defined as “before Jackie” and “after Jackie.”  I just cannot imagine it otherwise because it has had a momentous impact upon who I am, what I think about, my emotional intelligence, my value system, and the kinds of things I want to do and don’t want to do.

-Father

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A World Where Nobody Understands

The actual process of leaving the hospital when you stay there for so long and going back to your life is really a tough thing.  It’s like walking into this other world where nobody understands.  How are you supposed to go back and go to the grocery store and do these things when nobody else knows what you’ve gone through? 

-Mother

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The Routine Suddenly Stops

It became such a routine for us living at the hospital for that short period of time.  I’d get up, I’d go and use the breast pump then we would order breakfast.  Ok, now we check on him, now we do this, then we can do the CarePage. It was just silly things, but it was the routine that got us through.  It just became the way of passing the day. All of a sudden that stops and everything goes back to the way it used to be.

-Mother

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It Hits Like a Ton of Bricks

I remember Wednesday night. Our baby came down with a little bit of a fever.  I was rocking her in the chair up in her bedroom and she coughed.  I remember the cough being very full with a lot of phlegm. I immediately just started crying and my husband’s looking at me like “What’s the matter with you?” I mouthed the words because my son was right there.  I said “She’s really sick. This is something more serious than just congestion.  She’s really sick.” I remember rocking her in her bedroom and I was crying.  For almost two hours I rocked her in there staring at the crib, thinking to myself, “This crib’s going to be empty, she’s going to die.”  The next morning sure enough we started going to the ER and everything happened so quickly.  I don’t know what in the cough just kind of prepared me. I don’t know what it was. 

-Mother

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