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.
Amy, Your attitude has always been so positive and I admire you for that. You are a ray of sunshine for me. I am glad that I can read your blogs and keep up on you. I pray for you all the time. Love ya,
ReplyDeleteSharon
Amy, I know exactly how you feel. When we first learned our son had HLHS there were some med students there and even since then when I see my local doctor its almost like we are guinni pigs.
ReplyDeletePeople ask me all of the time how I am handling it so well but the truth is what other choice do we have as mothers but to do everything we can for our babies and believe that God will be watching over them. No matter what happens we were sent these babies for a reason. I still have my down days when I fear for what he will go through but I have to be strong for him and trust that he will be fine. If something happens and he is not well then I will know I tried everything I could and I will probably spend forever making sure people know his story and help to spread CHD awareness.
Keep holding strong. I will be praying for you and your family.
Amy, you're an amazing woman of God and I so appreciate your candor and honesty. There is always something going on that we can't know or understand in God's system, and I'm thankful that you are able to walk through that with humor, trust, and hope in the Creator of the universe, the One who is making your baby and will see you through it all. Thanks for sharing and we will continue to keep up and pray for all these things. Looking forward to hearing how God answers all our prayers! XO
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