Warning: This is awful. I would do anything to keep it from being awful, but I can’t. Read, or not.
We have spent this last week having a great deal of testing done, and we’ve met with the genetics team several times to go over our results. Our Puddin, the wiggly little guy keeping me awake at night with his gymnastics, is missing several important parts of his brain. There are additional issues of blindness and malformation of his face. The doctors feel that this is likely the tip of the iceberg and part of some larger syndrome, a horrible roll of the dice in development. It seems to be totally unrelated to my own neurological condition; just simple bad luck.
I don’t know what to do with all of this crushing horror. Never, never, never could I have imagined this. This is the worst that I’ve ever felt, and just for reference, I once found my mother’s dead body on the floor of her apartment, so that’s saying something. It’s so hard to reconcile the stark reality of the MRI images with the fact that yesterday I watched as, for the first time, the outline of a tiny foot or elbow tented the skin of my belly and slid slowly across. The baby was sucking his thumb during my last ultrasound, but he doesn’t have the parts of his brain that he needs to see, or hear, or crawl, or toddle along holding Lauren’s hand, or call me “Mama”. He may not be able to breathe on his own.
And you know, I wasn’t going to write this post at all because of what I have to write next, because I know that some people will not understand or approve of what I’m going to say. But this morning as I lay in the grey dawn of our bedroom feeling my son roll lazily within me, I thought that if nothing else, someone, someday will read these words and it might help them feel less alone. Someone else with a hurt and oh-so-wanted baby who wishes that they didn’t know what to do, but does.
We have made the agonizing decision not to carry our Puddin to term. The cost is too high, a short life filled with pain and suffering. There is so much about this that we may never know, but we know enough to know that we have to make a choice. That for our family, as his parents, doing nothing is not the right thing for us. That as much as I was unable to protect him from whatever interfered and altered his development so badly, I can and must protect him from this, no matter how much it breaks my heart. So I will be admitted into the hospital next week so that labour can be induced, we will have a chance to see and hold and say goodbye to our baby, and we will begin the long process of grieving and healing. And our hearts, I’m told, will one day feel less shattered than they do right now.