Guest Post from Rowan’s Dad/My Husband

A word from Doc:

I thought I could add a bit the conversation here and since I have relative few outlets, I asked my wife for a guest spot. So here it goes:

1. I want it to be very clear that we are absolutely optimistic, but this should in no way indicate that this is easy. We have been trying incredibly hard to reassure those around us, which hopefully in turn will reassure ourselves in the process (I’ll get to that below). When it comes right down to it, a whole lot of bad things can happen when our little man gets here. At best, he won’t need open heart surgery at birth. At worst…well, he could simply not make it or be left without any real life to speak of. We simply don’t know. What we do know is that there is an overwhelming chance that he will have his chest opened before he reaches adulthood, maybe even more than once. The extent of even his most minor of procedures will be more involved and dangerous than anything I have ever been through. He could even need a heart transplant AT BIRTH. So you’ll have to excuse my frustration with my colleagues’ and friends’ responses when they say “Oh, at least you know. It can be fixed. It will be okay.” Yes, it can be fixed. I honestly believe that. We can fix a lot of things that are incredibly serious, including a heart with pieces missing and pipes that are hooked up where they shouldn’t be. It will NOT be okay.

2. We are going to make Rowan’s life as normal as we can. That being said, he won’t be able to do some things (like contact sports, as if he had much chance of that with our genes anyway).

3. My wife is a superhero. Many of her readers are already acutely aware of my wife’s innate awesomeness. It strikes me every day I’ve known her that she is an amazing woman with an astounding amount of strength, whether physical, mental, or emotional. Because of this, she is incredibly good at keeping up the appearance that we are all doing fine and everything is hunky-dory and this is just something we have to do. No person in their right mind would think that what is going on is fine. We have just both adopted a single principle….

4. Fake it ‘til you make it. We are living our lives under the assumption that things will work out in some reasonable fashion. We have no promises. We have been in the position of packing up baby stuff before. If we let the thought of losing him in, it will take complete control of our minds and our lives and we would not be able to function, think, put one foot in front of the other, or remember to take our next breath. We simply cannot live like that and we are not going to allow it. That doesn’t mean that every moment you see us is not a constant battle to keep going, to wake up and go to work so that we can provide for ourselves, Evelyn and Rowan.

Doc