Since HLHS is such a rare defect and Cedars is a teaching hospital, I have had at least one person observing/learning at almost all of my appointments. At my cardiology appointment this week, a Fellow came in to observe. I jokingly said "what, you want to see the HLHS baby, too, huh? Never seen one, right?" He smiled and said that no he hadn't. During the course of the echo, he asked me when we got the preliminary diagnosis and I said at about 17 or 18 weeks, with a final diagnosis about a month and a half after that. I could see the wheels turning in his head. A few moments later he says "Can I ask you a really difficult question?" I say "sure," assuming he's going to ask me why we chose not to terminate.
But no, instead he says "your baby has been diagnosed with a REALLY SEVERE defect. But you seem to be coping so well - how are you doing that?"
Ah, the million dollar question. I had 3 immediate reactions, in this order:
1. What the heck business is it of yours and why are you judging my decision? (This was actually Dusk's first reaction when I came home and relayed the story to him.)
2. Ok, so I've been working really hard at trying to stay positive and you have to ruin all of that effort by asking a question like that. Gee thanks.
3. WOW, maybe God's not going to give us a miracle after all - but instead, HE wants us to use this as a witnessing opportunity. How often do you get an opening like that???
I have to admit that the 3rd reaction should have been my 1st, but what can I say, I'm only human. But the reality is that the ONLY reason I'm able to stay so positive and so at peace is because of my faith in God and Jesus Christ. I think I did say something like that eventually, but I honestly stumbled through my answer because I was so taken offguard. But the truth is that HE is what is getting us through and enabling us to face this really scary situation. I know that HE will either heal this baby (I know God still performs miracles all around us, even if we as humans want to explain them away - we're hoping He will do one here) or give us the grace to face whatever lies ahead. I know that because He promises it to us. And our faith rests in that.