Thursday, February 21, 2013

The Passage of Time

We normally mark the passage of time with birthdays, anniversaries, any date of significance usually more pleasantly associated with good than bad.  That passage of time evolves when you have a child that has medical complications or some circumstance out of the ordinary.  Two days ago marked two years since Travis DiCarlo passed away.  Travis's dad reached out to me when I was pregnant with Olivia on one of the parent boards and gave me a little of the run-down of what life with an HLHS baby was like; at that point he was post-Norwood and about to undergo the Glenn.  We didn't interact a ton, but that first touch with someone who got it and understood what it was like - it mattered and they have always had a special place in my mind and heart.  Nicole reached out to me many times while we were in the hospital during the transplant to make sure that all was well and if I needed anything.  Always in a balance between the constant heartache from the loss of her son but the strength to make it through each day to mother her two daughters - she is an inspiration.

February 27th will mark three months since Olivia's transplant and the fact that she will be 35 months old.  March 30th is three years since she had her Norwood, August 5th marks the Glenn, May 21st the Fontan and November 27th the transplant.  All of these dates scattered all over the calendar that woven together tell Liv's story like the makings of patchwork quilt.  Next Friday will be her sixth biopsy since the transplant, pending the results there we can start come back down on the prednisone and she will be free from a good amount of public restriction.  I am so pleased to say that we haven't put a pause button on life holding our breath from one biopsy to the next.  Instead choosing to trudge forward and enjoy all the new found energy and stamina that Miss Liv has these days.  She knows that there are routine hospital visits and that it may even result in a stay but her and Daddy have it all talked out.

Liv: "Sometimes go back.  Take red juice (blood), get band aid (on her neck after biopsy), have hugs (blood pressure), then done - outta there"
Daddy: "Yes, Livvy, sometimes we go back, but you know what...?"
Liv: "Always COME BACK HOME!"

If she were scared, terrified to go each time, I would feel like a criminal.  But this is her life, our life and we make the most of it, however we mark the time that passes with heartache and victories.  It is a full, rich life.

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