Tuesday, August 12, 2014

The Hail Mary's. . .

We've all seen them.  The dramatic end of the game play that makes it or breaks it for the team.  A desperate attempt to make the impossible possible and pull away a winner rather than a loser.

Well, we've been doing that for 20 years now with our kids.  Throwing up those Hail  Mary's and then praying.  Praying we land the basket, hit the infield or make the net.  Tomorrow is another Hail Mary.

Truth be told, I'm positive there is a God.  You know why, because the majority of our Hail Mary's have worked!  We've been faced with two impossible choices and after making one, praying it was the right one.  Whether it was leaving a DNR in place for Nettie or choosing to revoke it and push her through another life crushing infection.  Or choosing between a life taking cancer or a life taking treatment for Joshua.  Or putting our newly adopted son, Trayvon through another open heart surgery only to know transplant was not possible if it failed at that time.  And even the impossible decisions of quality now v. quality later in life.  We've had to decide whether or not to use medications in our daughter that cause neurological issues in people the longer they are on them.  Doing so would give her the chance to see life in a more stable and rage free manner but may result in life changing complications in her future.  Not doing so meant holding my daughter daily as she raged for two or more hours.  What kind of life is that.  What kind of choices are these??  Shitty vs. shittier.  That's what they are, plan and simple.  But you must make a choice and so chose we did.

Today we had to chose again.  We chose to wait for a single blood culture tomorrow morning.  The result, positive or negative, comes with risks and concerns for either outcome.  We, as a team, decided a positive means Sergio will need a new line.  That means removing this one and leaving him without one for 3 days and then praying hard we can put a new one in.  A negative means we get to go home.  But, knowing that when we turn off the antibiotics, we may be facing another life threatening infection like the one we just went through.  Both choices are crappy choices.

I know there's a God, because he's held me up as I've stood an listened to the doom and gloom of doctors for one child after another.  I know my sweet daughter that was to be is smiling down from Heaven, happy and whole.  I know God has my back and though bad things happen, I also know he's not making them happen.  He's pulling us through the shortcomings of this life.  He loves Sergio and doesn't want him to suffer but that's the world we live in, the answers just aren't here yet.  So he'll hold me up as we make choices to give my precious boy both quality and quantity and wait for the "answers" to come.

Nettie has proven that we've made some good choices.  I signed two DNR's (Do Not Resuscitate) orders for my baby girl.  Each time they were to be activated, I look at her and just knew it wasn't the right time.  She'd give us the signal she's ready to go, it wasn't my call to make.  The same for Joshua.  Despite the grim statistics and the side effects of the meds, and the life long disabilities that may occur or the chance he may need to battle another cancer caused by the treatment of the first. . . once the info was shared, we told the Dr. we'd only accept positive reports from that day forward.  We were going to live like it was all going to work and he was going to survive.  If we had to face another potential outcome, we'd cross that bridge when it appeared.   And Trayvon, we decided it was the wrong time to move to transplant, despite the misgivings of the transplant team.  We had hard decisions to make, and harder ones to live with if we were wrong.  In all of these cases we were right.

Our luck, time, whatever will run out one day.  We'll be faced with such an impossible Hail Mary it won't be realistic to hope for success.   Until then though, I think we'll just keep throwing them up and praying they're going where they need to be to make us a winner and not a loser.  I just hope God isn't keeping score.  :-)

With love,


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