If you had the power to change any one thing about your life right now, what would it be?
As I considered the question, I surprised even myself by not wishing Ewan's Tetralogy of Fallot away. It depends on the day you ask me, of course. There are plenty of days when given the chance, I would wish (quickly and easily, without a thought) to have it all taken back. I would still want Ewan, just with a healthy heart, and with the knowledge that we could take him home and not worry about all the things we are going to be worrying about once he is here.
It's not that I like the fact that he has Tetralogy of Fallot, or any heart defect for that matter. It's not that I would wish for it, for us or for anyone. But if I had the power to undo the diagnosis, I assume that I would also being undoing all the good that's come from it already.
I would lose the people I have met who have been so encouraging -- the people who have been through it before and who are going through it now. I would lose the knowledge and the experience of what it is to open myself up, to say that this is scary as hell, to be surrounded by people who can encourage, pray, think good thoughts, and offer experience. I would lose, I think, some of that deeply piercing and poignant love that I have for my son. Mama Bear would not, perhaps, have as much of an edge as she does. Life is precious and delicate even without complications like these, but what we learned about his heart made this particularly weighty with us. Not a single moment is taken for granted. Not a single kick, nudge, or roll goes unappreciated. The obvious presence of life is deeply treasured.
I know as I say all this that his birth will change everything -- that is when the real difficulty will begin, when we throw all those numbers and all those other stories out the window and wonder what our family's story will be. Right now, it is all preparation -- doing all we can to get ourselves ready (and our medical team doing the same) and anticipation -- not knowing what to expect, wondering what it will be like when we are immersed in the waking, breathing reality of CHDs and NICUs and surgeries.
I know I'm going to weep. I know I'm going to sit and wait in hospital waiting rooms more than I want to, hopped up on equal parts dread and hope. I know I'm going to have days where I fall apart completely.
And I know you are going to be here. I know that you're pulling for us, and that you're pulling for this baby. The only thing that will make this journey even remotely bearable is that we don't make it alone.