When I took these pictures in my parents' garden, I had no way of knowing what was coming our way in terms of diagnoses and therapies. I didn't know that he couldn't see clearly, or that he was functioning at a thirty decibel hearing loss.
I didn't know that he had profound muscle weakness, or that every movement felt, to him, like the entire earth was shifting. I didn't know that everyone sounded like they were talking under water. I didn't know that the way he liked to lean on people and lie sprawled on the floor were signs of his inability to maintain his posture, as opposed to signs of him being a laid back kind of kid.
I didn't know that in a few short months, we would find out that he needed glasses and that he desperately needed his ears fixed. He also desperately needed speech therapy, and, the biggest surprise of all, he needed immediate occupational therapy.
I didn't know that when he was six he would have already spent half of his life in therapy, or that he would be diagnosed with Asperger's Syndrome, Sensory Processing Disorder, and other unexplained and unnamed neurological problems.
I am so thankful I didn't know. I am so thankful.
Maybe it sounds strange to say that, and sometimes it feels strange to articulate it since, as a general rule, I am not favorably disposed to not knowing things.
I've always thought that I would definitely want to know if my unborn child had some kind of genetic defect or developmental problem. I was sure that it would only serve to make me prepared and strengthen my resolve.
Now I'm not so sure. I find that happens more often the older I get.
I know that a prenatal diagnosis can be very helpful in a case where the problem can be treated or corrected after birth, but what about a prenatal diagnosis of a condition that cannot be fixed?
It seems, at times, to offer a false choice: There is nothing to be done, so you can live a life of hardship with a defective child, or you can opt not to have this child. What does that do to a parent?
If, during my pregnancy with Fiver, my doctor had said:
Look, Aimee, I just want you to know that this baby will be delayed. This baby will regurgitate all of his food for the first ten months of his life because his esophagus is too weak to push the food down his throat. He won't sit up until he's eleven moths old. He won't walk until he's two. He won't like swings or slides, and playgrounds will be a nightmare. For years. Every time you go over a bump on a car ride, even a speed bump, he will scream. He won't say your name until he is almost three. He will hum and sing and flap his hands and stare at pulsing lights. There's more, but I don't want to scare you. And school . . . well, let's just say you will cry. A lot. So good luck to you.
I would have been terrified. I would have been immobilized. I would have dreaded Fiver's babyhood. It would have been a disaster.
Because there are things that no test can ever tell you. Things about what might happen when you open your life to having any child, especially one who might require extra care.
You never know how it will all pan out. Even with children perfectly formed.
And there is a secret, too.
These kids who require more -- the ones that can often be thought of so compartmentally, so statistically, so clinically -- they bring us more. They are the ones who are gifted . . . to us, if we are willing to be the recipients.
There are graces that come, unbidden, into your life. There is a deep well-spring of joy to balance the difficulty. There is the love that bubbles up, unheeding of hardship and exuberant.
It's the hand of God changing your life, and that is the thing that tests can never tell you, and for which you can never be prepared.
Fiver drew this with his own little hand, and I could cry for looking at it.
The hand that was born weak has made our family strong.