Did anyone here that big “thump” last week?

It was me.  It was the sound of my feet hitting the ground.  It was soft, strong, intentional, and it felt so good.

Most of you know that Joey’s catherization went well.  That he was out in record time (for him).  What I didn’t tell you was what happened during that cath.

the morning after


They went in, they measured.  They checked a couple of things, tried to see if closing his fenestration would improve his circulation (it didn’t, he’s not ready for it).  They also took some pictures.  And then they were done.  It took about two hours in total.  That is the amount of time it took them to gain access to his body last time.  My mouth still hasn’t quite closed.

During this time I was with Victoria and Josh, they were there to film a bit of me and Joey – but mainly to interview Joey’s cardiologist and surgeon.  Dr Marx was called down to the cath lab during his interview to do a echo on Joey while he was sedated.  When he returned he was able to fill me in on what they were seeing.

Then the interview restarted.  Victoria asked some more questions, one was something along the lines of “what does this mean for Joey?”  The response ” he will most likely not need surgical intervention for quite some time”.

Now, here’s the thing – for the last 2.5 years I have spent every moment in limbo.  Knowing that absolutely anything was possible.  That life and death can occur at any moment.  So when I am given a timeline like “quite some time”, I don’t question it.  I just think “uh, huh.  Okay.  I guess Joey will let us know when that is”.  This time I wasn’t by myself though.  V continued to ask questions:

“Can you define what ‘quite some time’ means?”

dr. marx

The response – THREE TO FIVE YEARS.



And like that, I was given permission to stop falling.  To allow myself to have these human expectations.  To KNOW that yes, anything can happen – but it doesn’t mean that I need to stay there.  It doesn’t mean that I need to be open to death all of the time.  It has made life very tricky.

Our motto has been to stay flexible.  While that’s a fantastic way to be, the way we have been doing it is that we’ve allowed it to limit our intention.  We live our moments together with an intensity and belief that we may not have a tomorrow, which hasn’t been exactly practical.  It’s limited us a lot.  The dance is finding the balance.

Right now we are trying this on, to live with a different kind of intention.  Who knows, maybe we will dare to believe that we will be together for the next 80 years.

Joey and I are about to get in the car for Boston, he’ll be getting ear tubes tomorrow.  It’s a sedated procedure that will be supervised by cardiac anesthesiology.

I don’t plan on saying goodbye – I will choose stay in our hello.



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