heart.

We met with Abe’s team this week and I hardly know what to write about it.  They were so kind, taking nearly 2 hours to answer our questions and draw diagrams.  This Hypertrophic CardioMyopathy is throwing us all for a loop and it is slowly strangling Abe’s heart.  And he has these freakishly large carotid arteries that prevent them from being able to go in and scoop out the tissue to make his ventricles less strangled, which is the only treatment for HCM, besides the meds he’s on, which aren’t working.  So the only thing that can save our boy is a transplant, which comes with it’s own set of problems: where to go and how to make it suck the least for all of us.  We have given our kids the abridged version: that Abe needs a new heart and that we may have to go to California or Boston or Ann Arbor to get it but that we will do it like we do everything: together, us 8 and 2 dogs and a white blanket named Black and a keloid scar named Steve.  We will do it together.  But first we wait for conversations to happen and scans to be reviewed that will tell us if he’s a candidate and then how long we might wait.  And if he’s not or it’s too long, he will go in and they will attempt a very tricky bi-ventricular repair and we will do that together too.  Us and the village that has texted and let me cry on shoulders and given hard and frequent hugs.  Our sweet office ladies at school who saw that the smallest bit of kindness yesterday would completely undo me, so let me be all business as we amended his emergency plan to account for the ridiculous amount of blood thinners he’s on now and the steps that will need to be taken if he falls and bleeds.  His teacher who emailed verses and encouragement even as her own heart is surely breaking.  Our fave principal who called and said, whatever you guys need from us, from us as a school and us as a family, you have it.  Just name it. To the nana and papa who heard me say that we will do it together, the 8 of us and said, make it 10 because wherever you go, we will come too so we can be your help.  Who offered to move with us to California so we won’t be alone if it comes to that.  How to even get my teeth around that bit of yumminess?  To friends and loves who have called and showed up and texted and who will continue to do so because they are our lifeblood.

We know this: that the Father who ordained that Abe be born in Inner Mongolia nearly 7 years ago with a bum heart that gets bum (mer) by the day, knew that where he actually belonged was here, at 9000, with a family who would move anywhere for him.  And who are learning themselves how much love costs, but that it’s always in the budget.  That the asinine rule of love math is that the more you give it away, the more you have to give and if Mr. Scrotenboer can explain that one then I will give him all the tea in china because it confounds me daily.  We are teaching it to our kids as the math you will actually use in real life, because let’s be honest: sine and cosine…almost useless.

So we would covet your prayers as we wait to hear if Abe is a candidate for transplant and then as we hit the ground running toward a new heart and a cure for this kid who would spend all his day playing sports if that was a job.  And as we process what this will mean as a family and work through the hard bits.  For unity in our marriage and protection for us two, who 23 years ago said yes to the good and the hard and had no idea, just no freaking clue, what that would entail.  For spring break.  Three months ago when we planned to go, just the 8 of us, to explore New Mexico for a few days before meeting up with every blessed member of my family at Breckenridge CO, we were given the green light and now they are very concerned about the pressures in his heart at those high elevations.  But they consider the whole child and know that this boy, whose greatest fear is being left behind, would shrink into a ball so small we wouldn’t be able to find him if we tried to make it a party of 7.  So we will go and we won’t hesitate to fly back with him if he can’t hack it at 7,500 feet.  Won’t hesitate for a second.  And ultimately are going with our team’s blessing and the number of Denver Children’s on speed dial just in case.  Would you cover that too?

this is me being real.

 

3 Replies to “heart.”

  1. I can’t stop the tears. They fall for Abe and your entire family. They are mama tears for the ache in your heart. Tears for the grace God is showering on you. Happy tears for the light your family is shining in this dark world.
    A promise to pray for your sweet boy.

    Like

  2. praying, because that is the first and best thing anyone can do. Thanking God again that He chose for you all to be Abe’s family…

    Like

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