Why is it so hard to hear that his heart is put together so wrong? It's been six months since we found out; you'd think I'd be used to it by now, especially after seeing it beating away on the screen in the darkened room where I lie curled up next to my son, praying that I'll be enough comfort for him to be able to sleep through it.
But it's still suddenly hard to breathe when she starts talking, using words like stenotic and smaller and November.
November.
He's going on the schedule for November, and we still don't know exactly what they're going to do but I can't pretend any more that my boy is fine.

We've been in such a blissful, beautiful honeymoon stage. Granted, there are things that remind me daily that he's not your average newborn. I weigh him and check his oxygen saturations, I text his stats to his team and massage his scar every morning before we come upstairs for meds. We don't take him out in public and no one really comes here, either, but for the most part our day-to-day life feels so normal right now.
Except that it's not. And it's brutal to be reminded that underneath his perfect exterior is a tiny ticking time bomb, a heart that's only going to work for a few more weeks before it needs to be repaired again.
I've seen it written that being a mother is choosing forever to have a piece of your heart walking around outside of your body. But what if that piece of your heart got damaged when it broke off? What if you have to live with the very real possibility that forever isn't going to be very long at all?
My head is all over the place right now. I know that he needs more surgery if he's going to have a chance at life, but the thought of handing him over again, this time for something far more complicated, is almost more than I can bear. And there are still two more months to go before it will actually happen (provided he stays stable); am I going to live with this rock in my gut until then, the tears threatening just below the surface and a throat so tight I can barely swallow?
These are the days I'm just not sure I'm cut out for this. If just the mention of a surgery schedule with my son's name on it is enough to make me feel like this, how am I actually going to watch them wheel him through the doors?
I just need to trust that the One who has brought us this far will continue to go before us in these days, too. It's so much easier to type that than to actually live it, but even the strongest faith has to start somewhere. I'm not brave enough to surrender my baby to His plan, not ready to admit how scared I am about what's coming. But I can choke out the truth that I cling to, my salvation as I drown in all this uncertainty. He is faithful, He loves my boy, and He loves me. None of this is happening outside the shelter of His strong hand. Nothing ever will.
I will speak these words until I believe them. This is my mustard seed today.
I'm an old friend of Phil's (one of the Brown's from haliburton) and have been hearing about your story through my family. We are praying.
I don't know if you've heard of him, but a well known blogger Tim Challies would likely love to share your post. I believe many would be impacted and encouraged to pray for you all and your son. Please let me know if you'd like me to share your last blog with Tim; I can appreciate that you may like to keep this private. With love, Jill
Believe me when I say, I know exactly where you are. We (my husband and I) are God-fearing people and know that His will is bigger than ours ever will be. Owen (our 2-yo with multiple CHD's) was unequivically easier to hand over the first time because we knew there was no other way we were going to have a life with him. When we got him home, very few visitors were allowed and visits outside were few and far between. Then six-months cones around and I have to hand him over to an anethesiologist...NO! My heart screamed but again, if we want more life, He must have all of us. Now it's 2 yrs later and I'm preparing to do it again. What have I learned? It's not easy but His yolk is light. He has a perfect plan (regardless the circumstance and our faith), but most of all, He is always for us. Ali, you are doing an amazing job and God sees that just like everyone else. Know He is your strength and guide and know He only wants good for you and little Ethan. You got this! I promise because I know without Him all I have is nothing.