Written prior to Robin's death.

THE ROBIN ELIZABETH MARSH FAQ

[Part Two]

How are we doing?  We are doing much better than we deserve and are very grateful.

Why didn't you seek a heart transplant?  To age five, heart transplant patients have about the same mortality as surgically treated patients.  But, *all infants who receive a heart transplant require another heart transplant by age nine or ten.*  They have life long compromised immune system problems.  All in all we felt better with the Norwood/Fontan procedure.

How is Robin doing?  So much better than we could ever have hoped.  She is doing very, very well.

What do you think of Dallas Children's  I've been in seven differently managed ICUs on children's admissions for various reasons.  Of those, I would rank Dallas as the best and I'll decline to name the worst (it isn't in Texas).

More updates under the line as people ask questions and as we learn more.  Things are going very well.

What did you get wrong in the first FAQ?  The literature all gave the operation times as immediate (for the Norwood), four to six months (for the hemi-Fontan/Glen) and twelve to twenty-four months for the Fontan.  They used to put the Norwood off as long as possible and rush into the other two as soon as possible.  Now they do the Norwood as soon as possible and the other two are put off as long as possible.

How are things going now?  Things continue to do very well.  Robin is eating with gusto (for which we are very grateful), sleeps well and is alert and active.

Afterword.

This site exists because I was asked to write an essay about how Win and I survived the deaths of Jessica and Courtney (at almost seven years of age and almost two years of age).  I wrote the essay for the Texas State Bar Journal (the magazine for Texas attorneys) because the people who asked me to write thought it might help someone.  Since then I've received almost thirty letters from people who were helped by the article and a number of requests for copies.

One difficult thing with terrible loss is keeping it from overwhelming your life.  While I may be someone who has had terrible things happen to me, I am not someone whose identity is terrible things.  I have a wonderful marriage to someone I adore.  Our surviving child Heather is an incredible gift from God.

We love Robin a great deal.  Heather had been asking us for a baby for four years and we wanted her with all our hearts. We still do.  I know her problems will help her to fit into our family and to understand the rest of us. The only thing I struggle with is the sense of identity that most parents of "cardiac kids" experience due to the various life style changes and alterations that go with raising a child with cardiac problems.

Still, I am so grateful to have brought a child home from an ICU and to have Robin at home to love and raise.  I know that it could be better (and that I've "won the lottery" in a negative sense, three times now).  But it could also be far worse.

I realize that I don't talk about things very much.  Not that I am not facing them or dealing with them, but I am reluctant to force the world around me to deal with them too.  By putting things off at a distance I am able to let those who feel a need to know the details come and read and learn them without forcing the details into the space that connects my life to others.

So, maybe if someone gets too critical about how I don't understand pain or grief or suffering because my life is too perfect, or launches into how selfish I am to have just two children at home, or is a close friend who cares and who needs to talk in order to be comforted (one of the greatest burdens is the pain that others feel about what has happened to us), I may say something (especially to the friends) or I may not (especially to just the random hostile pharisees one meets day to day).

But I am, I remain aware and present, and I am not yet reduced to only someone who suffers.

Robin died following the writing of this update.

http://adrr.com/living/rfaq2.htm

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