Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Thursday, November 17, 2011


Xavier's body was having a hard time adjusting to his new circulation.  He was not eating the same, he wasn't peeing or pooping the same, his stats were all over the place..I was concerned.  I was the only one concerned.  They just kept saying...this is how it goes, give him some time.  That was hard for me to do.  These people had hard wired me to worry.  To check his temp, his stats, to write down every ML that he drank, to keep track of every pee and poop, to weigh him every other day.  Now they were telling me to relax.  Alyson even took my scale back :(  She said we didn't need it anymore.  She also said that it was up to us if we wanted to keep the pulse ox.  WE KEPT THE PULSE OX!!
After the Norwood you build this bubble.  You become comfortable in the bubble.  You control who comes in and when you go out.  It was safe.  X was safe.  We were safe.  I became super stand-offish.  One day in the doctors "well side", a little boy started walking over to the car seat, pointing and saying "baby".  I made Nate pick up the seat and hold it on his lap.  The poor little boy got tears in his eyes.  I didn't care.  My heart was cold to the needs of everyone else but Xavier.  And I guess that's what a mother does.  Now I was told to stop doing all those things that kept him safe and RELAX.  WHAT??!!!

After morning rounds on Friday, we were handed our walking papers.  Not before Xavier and I made a trip to child life to pick up his beads for Beads of Courage.  He earns a bead for every procedure, needle stick, xray and echo he gets.  He is so brave and I am proud that he can be a part of this wonderful program.
I put his beads in order of events.  It is almost like they tell a story.  One day he will be able to look at those beads and be reminded of how special and strong he is.
As we were packing up to go home, we got a little knock on our door.  It was none other then little Kellen and family, coming to see us off.  To see Kellen is to see hope.  He really just gave me the boost I needed to go home and tackle this next chapter in our lives.  He is so healthy and doing so well.  I am super excited to set up play dates with him.  It is important that X have some HLHS friends to talk to and grow up with.  Kellen will be his heart friend forever!!

So there we were..heading back home.  Nate had a gig that night, so his parents came to stay.  They headed back to Rhode Island on Saturday.  My mom came to spend the week with us.  It was so good to have her there.  On Wednesday, October 26th we went back to CHOP so Dr. Wernovsky could see us for a post op.  He was happy with everything.  We were going to get X his RSV shot once a month, see Dr. Fernandez once a month and come back to see him in January.  He told us how proud of us he was...took a picture of X, gave us a hug and sent us on our way.  As I was walking out the door he said..."It's time to let go a little, Jackie."  "I will try my best", is all I could say.  I AM STILL TRYING!!!

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