Yesterday we removed a comment from a stranger from near Clarksville, Tennessee that was hurtful and a bit crazy. This person suggested that Benjamin isn’t progressing, that he will likely be disabled and asked “when is enough enough?”. Ignoring the fact that this person is suggesting that we murder our child, and ignoring the fact that Benjamin has made so much progress and what we are looking at here is a minor setback, and finally ignoring the fact that this person obviously wanted to hurt us – it brings up good questions, ones that Amy and I ask ourselves a lot. Are we being selfish? Should the pregnancy have been terminated when Carol’s water broke at 19 weeks? Is it fair to Benjamin to fight for his survival?
When his water broke and the question came up of whether we would consider termination – the three of us quickly agreed that as long as there was room for a miracle, we would aim for miracle. We knew the risks – the doctor explained that even if the pregnancy reached 23 weeks, the baby would probably not survive and if he did he would have a high chance of disabilities. At that point we were focused on reaching that 23 week mark. But even before this, even before we were pregnant, the three of us agreed (in writing, notarized no less) that we would not terminate unless there was a deformity “incompatible with life”.
Did we feel this way because we wanted a child “no matter what”? Is it selfish to want to share your love with a child or an adult no matter how different their quality of life is? Or would it have been more selfish to say “No – we cannot take the risk that our baby will have disabilities.” Yes, part of the factor for our decision was that this would likely be our only chance to have a baby of our own. In order to reach this one pregnancy, we had to use 5 of our 7 embryos we froze before Amy’s cancer treatment and we could not make any more. Maybe we really didn’t understand the risks involved. But I can guarantee if we had decided not to go forward with the pregnancy the three of us would be dealing with a guilt of a different kind.
So what did we do? We fought. We did everything we could to give him the best chance possible. Carol was amazing – she was on bed rest most of the pregnancy, she suffered through a million tests, she spent weeks in the hospital away from her children and husband. Her family was wonderful and supportive every step of the way. And as she says – if the doctors told her it would help Ben, she would do it without any explanation needed and no matter the effects to her. In the end, Carol even risked her own life in order to give Benjamin a few extra days to grow before she was rushed to an emergency c-section that we know was tougher on her than she even let on.
But now here we are – Benjamin thankfully did survive. And we love him more than we’ve ever loved anything. Yes – he will likely have one or more disabilities when all is said and done. Will he have the life we would choose for him if we could? Not likely – but do you know what? No one gets the life they expect. Life is hard no matter who you are. Amy and I have been through a lot together and it has only made us love each other more and appreciate life more.
Even through all of what Benjamin has been through already, I have seen him smile in my arms like a kid who’s won the lottery; I’ve seen him melt in Amy’s arms like all his troubles have disappeared; and I’ve seen the excitement on his face when he gets his bottle. This kid is going to be fine – in fact, this kid is going to be great!
How can I be sure of this? Our lives are now focused on it: Making Benjamin’s life the fullest, loving him with all our might and surrounding him with people who love him. I know this isn’t any different from what any parent does and that is what makes it wonderful. And it also, despite any challenges he may face, makes him a lucky kid.
Benjamin will lead a full life. He will have challenges, no doubt, but like it says on the top of the page – he’s one tough kid. So yeah, we wonder if we made the right choices, but we don’t wonder for very long.