We all have a path in life. No one’s path is straight. Yet I keep trying to see James’s path, to plan it, as if he is somehow different than me, different than my other children. As if somehow, I can know if I just think about it hard enough, as if somehow I can plan out how this will all end. When I look ahead and try to see James’s path, it is full of twists and turns, obscured, confusing, frightening. In my mind, it”s gray, lined by trees with skeletal arms, reaching out to ensnare me. It’s hidden by dense, cold fog.
We fielded another curve ball yesterday. James went to the cardiologist. He has gained an incredible 42 grams per day since he was discharged from the hospital last. A “normal” baby averages about 30 grams (or about an ounce) per day. So, he’s gaining weight extraordinarily well. They even want him to slow down some, so we have decreased his caloric intake some (less formula in his breastmilk).
The curious thing is that babies in heart failure don’t gain weight. Heart failure is a wasting disease. The marker of well-controlled heart failure is thriving and weight gain. And James is thriving. He is really thriving. It just doesn’t make sense. To further muddy the waters, when we sat to chat with the cardiologist, he explained that a third pediatric cardiologist in the practice reviewed James’s most recent echocardiogram. And this third cardiologist is not in agreement that James necessarily has HCM. In fact, he thinks that it might NOT be hypertrophic cardiomyopathy, but rather a diffuse thickening of his heart. We still don’t know the reason why. We still don’t know for sure that it isn’t HCM. We still just don’t know. That’s the long and short of it.
James is authoring his own book on trisomy 18 – like all of our children do. And as his cardiologist said, it’s a book that we are reading page by page, as he writes it for us.
It’s so easy for me to try to look ahead, to try to know, to try to plan. It’s easy to focus on the individual trees and miss the beautiful forest right in front of me.
Yes, James is more fragile than my other children. Yes, his death is probably much closer than theirs. Yes, he requires a lot of specialized care and worrying. But his path is already set. It was set before he was born, and it can only be the way that it will be.
Again, I must step back. I need to re-envision his path – not see it as cold, dark, frightening. I don’t know anyone’s path. Not mine, not Evaline’s, not Hazel’s, and not James’s. And I can’t know. All I can do is love him and walk along with him, witnessing his life whatever its length, making decisions that he leads us to make.
I have to step back and see the beauty of the forest instead of seeing those trees with their grasping branches. See the beauty in my son’s bright blue eyes, his rosebud lips, his baby coos, his chubby wrists, and fat belly. I need to embrace the beauty of being a mother to this special boy. I need to stop trying to see the path and just walk along it to wherever it ends.