Friday, September 2, 2016

Hide and Seek

I'm a huge fan of sugar!  I love sugar in all its various forms- straight up, pure, unadulterated, cane sugar, the 'herbal' natural sugars and even the sugar substitutes.  Corn Syrup...love that too! Sugar makes everything better! I love to sugar coat my life.

I have made sugar coating my life an art form really...I've been doing it for decades and it really has worked out well.  It worked especially well when my kids got sick when they were little, when I could still manage their life for them and everything was made better with ice cream, match box cars and new barbie dolls.

Until recently...

I avoid writing because I have seemingly run out of sweet things to say.  I have lost my perspective and I have had to come to the uncomfortable conclusion that life for this little weary family is hard and even bitter- I would be happy saying it is bittersweet because even a little bittersweet isn't bad.

The low blows are happening at alarming rates.  There are blessings too...don't get me wrong but even those are becoming hard to pick out from the line up of intruding problems.  It never use to be so hard to see the blessings.  Now, they come disguised.  The kids are getting tired of the way I try to sell them on the blessings- like a bottle of Snake Oil with huge promises.  You can't blame a mom for trying to feed them a steady diet of hope when all they have been noshing on is despair.

"Look at that!! We didn't lose one single sock in the washer today!"  That is about what I get excited at these days.

OR

"Hey, no one lost consciousness today!  You kids rock!"

That is always met with eye rolling- which they are really good at!!

I got the official report on Spencer's 'incident' last week.  I love that they didn't just say he 'died'.  Instead they said, "11:22 the patient was without a blood pressure or a heart rate.  At 11:24 a blood pressure was detected."  It doesn't sound so bad when they put it that way.  Like he just misplaced his blood pressure and heart rate...no problem, we found it again in no time!

And that is where part of the problem is.  It was a dramatic moment.  For me.  For Spencer.  For all of us.  The few people who have heard of our tale say things like- "Well, he's okay now."  and while I realize that is the obvious thing to say and the well meant thing to say, he is not okay.  Not one part of what happened was okay. It wasn't okay last week and it's not okay this week.  And so there is this huge gap between what each of us are feeling and how people around us respond.  A complete disconnect, a different realm and a total breakdown in communication and that, in some ways, feels even harder than the actual event.

Not only is this the case from outside of our home but even with me!  I don't know how to treat Spencer.  I don't know if I should act the way I feel inside or do what I always do and sugar coat it and say things like, "Well, at least it happened in the hospital and not while you were driving!"  You know, come up with all these other observations, which really only serves to distract from the one thing that feels terrifying and too big to approach.  So, then Spencer feels a disconnect too and this in- congruence is mind numbing and it doesn't validate his complete fear and overwhelm either.

So, we in a fumble, not very good at life right now.  We are stumbling and tripping over ourselves and there is an undercurrent of despair and extreme fatigue both physically and mentally.  And every time he leaves my sight, my insides churn but I know I have to keep him in God's hands and trust that he will be taken care of.  So, it's business as usual.

Last night, along with the final reports came the final diagnosis- basically, Spencer's natural 'pacemaker' is failing to respond to his heart needs properly.  He also has what they call an ST Elevation and Early Polarization.  This condition is the one you see on an MSN headline when the seemingly healthy young adult drops dead on the basketball court- sudden cardiac arrest.  It is the worst of the electrical heart problems a person can face.  Spencer has that.  Can they fix it...not sure.  Our pacemaker consult is still 2 weeks away!!

Sam's heart is struggling too- more increased pressure in the right side.  We have watched this steadily increase over the past two years.

The most frustrating news of all?  Both Spencer and Samuel's immune system panel came back looking as bad and worse than Shelbie!  We are waiting for our Immunology consult for the boys but I am assuming they will both have to start the same transfusions each week that Shelbie does!!  All that to the tune of nearly $40,000 a month!!!

Let that sink in...$40,000 a month to give my kids a little better quality of life. I am a little worried and overwhelmed.  It's getting harder to see how I can keep doing this.

The blessings are there...just hard to find like a really good game of Hide and Seek.  I'd like to say I will keep playing but honestly, some days are hard.  Some moments are harder.  I sure hope that this heaviness lifts soon.



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1 comment:

  1. I don't know how it could possibly be gracefulike to go through all of that. Tripping or stumbling through makes a lot more sense. I, howevwr, find grace in your honesty and in the truth of your words. I just wish I could make things better.

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