Yesterday's fetal echo confirmed what the first doctor suspected. I'm not going to name the diagnosis here because I don't want it to show up anywhere on a Google search (even if it's the 10,394th page listed). There is a whole range of fetal heart defects that exist, and this one exists on the side of the range that, if your baby has to have a heart defect, you definitely don't want to land on. It is severe. There are holes in places there shouldn't be. There are vessels a mere fraction of the size they need to be.
Unless a miracle happens between now and his birth, Ewan will be spending the first weeks of his life in a hospital. He will need multiple tests and operations to deal with these abnormalities. Defects. Whatever you want to call them. Whatever the label, I hate them.
I can't tell you how much it hurts to know that I won't be able to take him home with us. That I will need to leave the care of my midwives more than halfway through my pregnancy and deliver in a hospital. That within hours of his birth, he will be transferred to a different location while I recover from labor and delivery. That in his first weeks of life, I will need to get in my car and drive to the hospital to see him, to touch him. That after he's born, he won't immediately occupy the room we have set aside for him.
I know he will be well cared for. I know these steps will be necessary if he's going to live and thrive. I know we are fortunate to be so near a facility that can handle this, and that we live in a time where babies who wouldn't otherwise have a chance of making it can grow and thrive thanks to some extraordinary advances in modern medicine. I know there is nothing I could have done to change this. According to the doctor, these things "just happen." No one really knows what causes it, only that it's something that likely started within the first three or so weeks of my pregnancy.
None of this makes it any easier. Believe me, I wish it did. It would make things easier on all of us; we wouldn't be huddled and weeping in the corner, and you wouldn't be shifting in your seat, searching for the right words or wondering if it's okay to hug us. We are walking a path no parent wants to walk, and having to make choices no parent wants to make.
I know that our feelings will continue to shift, change, and evolve. I know we aren't the first to experience this. I know that we will experience substantial hope, and that we will find peace and laughter in unexpected moments. I know that our son is a gift and a blessing, and already a joy to his parents. But it still hurts in a way no earthly tongue can describe, and only a supernatural and heavenly power can change or heal that.
This is a portion of what I wrote to my dear friend Christianne this morning:
I am jealous of every parent who's never gotten bad news, of every parent who has had a healthy, normal baby, of those who have never had to navigate this path, of those who have not had to weigh the sometimes tremendous cost of choosing life when its beginning looks so bleak and challenged. I've heard some of the traditional platitudes that inevitably come forward in the speech of those who mean well: things like "God doesn't give us anything we can't handle." Pardon me, but what a load of bull. Maybe He allows these types of trials precisely because He already knows we can't handle it -- that we would need to lean on Him chiefly, that all our dependencies would be on Him and not on what we could do, that we would humble ourselves and ask for help from those friends and family that surround us and stand with us. If there's one thing James and I are strikingly aware of, it's how completely helpless we are in this place. We can do nothing to effect the change we desire.And so here we are, at the head of a path we did not expect, wondering what kind of story will be told in the steps we take.I'm confident of God's infinite love for this little boy. I know His heart for children. I know this news does not surprise Him. Sometimes this knowledge is a tremendous comfort, and at others, it makes it all the more difficult to reconcile with the truth that I'm waking up in a world where babies are born with severe heart defects and don't get to go home with their parents after they're born. And somehow, inexplicably, the world keeps turning and the birds keep singing when the sun comes up.
Lord, have mercy.