Getting comfortable

I was passing on my blog information for a new parent trying to decide if they wanted to proceed with surgery and I realized how few and far between my posts have been. I was reflecting on why that is, I believe, mostly because we were comfortable, nothing to report.  Sophie had an appt with her surgeon this morning and we were thrown for another loop.  Not our first loop, we have been through many many loops over the last few years, in fact I have started to expect loops, I actually feel comfortable with the loops.  So in all my ponderings this morning I realized that we have become comfortable in our difficulty.  After nearly 6 years of this, it all seems so second nature; the surgeries, the procedures, the shots and yes even the loops.  I remember last summer after her abdomen literally ripped open and the initial shock from that loop wore off, I actually cracked up laughing while praying to God about that one because I literally thought "What next?" Flipped ports, torn incisions, black dying incisions, infections, popped balloons...small problems inside our big big difficulty.  And I am realizing we are comfortable.  Maybe too comfortable.

When you are in the midst of a storm, you bolster your strength, double your prayers and ride it through trusting in God.   Our "storm" is never ending (at least on the grand scheme it feels that way) and I don't have the luxury to allow myself to look forward to the sunshine peeking through at the other side.  I haven't ever felt able to look ahead, so I kept  my head down, and made myself comfortable.  I was trying to give a friend a little "what to expect" advice before her daughters surgery and I realized the surgeries don't even make me uncomfortable any more.  Like I'm numb to the idea of my child having surgery?  I don't like this feeling that I am comfortable in my difficulty.  Our pastor has been speaking on pride the last few weeks.  My comfortableness I believe is a form of pride.  I am not worried about surgeries because "I am an expert at this I don't need to worry, I know what to expect."  We disergarded the surgeons advice early on in this round and injected more than we were supposed to because  "I am an expert at this, we have been through this literally a dozen times, we know what we are doing."  We failed to keep track of how much we were injecting this time because  "I am an expert at this, it will all work out fine like it has in the past."   We have become comfortable in our difficulty.  We have stripped God of his title Savior in this situation because we pridefully became skilled at the juggling that we didn't  think we needed to trouble him with helping us.  And here comes another loop...

It wasn't till I left his office this morning that I could hear clearly all the things the surgeon wasn't saying.  He was not his usual "looks great, going great, everything is great" self.  There seemed a very strong "don't freak this parent out because parents always freak out" kind of vibe.  He tried to casually tell me that I should "definitely stop doing injections" and actually repeated that several times in several ways.  Then he told me to watch her expander for signs it is leaking.  Her back expander is soft. Because I have been too "comfortable" to pay attention to whether it was firm and is now soft (that would be a bad thing) I don't have enough information to gauge the situation.  But basically there is a chance that the back balloon is leaking. During my debriefing with Craig he asked me for "worst case scenario" - it's not great.  If it's leaking we rush into surgery soon (like next week) and try to salvage what we can but it more or less equates to two surgeries and 8 months....for nothing....or least very little mole removal...and that's all if everything goes well and there are no other loops on the other side of surgery.  Yeah, not a fan of worst case scenario.

If the expander seems to be holding it's own, surgery will probably be near Christmas which is much what I was expecting/hoping. Please pray for us.  I am grateful for yet another loop.  Especially this one, because it woke me up to how comfortable I had gotten.  People are frequently telling me how "brave" I am....I'm not brave.  I am probably the most unbrave person I know.  But I had allowed pride to creep in and make me feel like some Mommy superhero and I had gotten comfortable in my difficulty.  I am not a superhero.  God is the brave parent.  I am humbled by his example.  Please forgive me my pride and help me pray we are not traveling down the path of worst case scenario.  A friend recently told me her four year old frequently prays "for Sophie's balloons not to pop"....please Lord, forgive me my pride and my "comfortableness" and please grant Kara's prayer!!!