The doctors say Jack has Mobius Syndrome. It is a rare disorder where some of the cranial nerves don't form properly. Some people have only one nerve affected, some two.... Jack seems to have a pretty severe form.
It explains why he can't look to the side, or really control his eyes well at all. Why he doesn't suck or swallow. Why he seems to have no facial expressions. It could also explain why he can't breathe. The muscles controlling his tongue, throat, vocal chords, could all not be working and therefore they close up or block his airway.
That's aside from his chronic lung disease, which doesn't ever seem to get much better. It's a vicious circle. Being on the vent makes his lungs worse, but he can't get off the vent if his lungs don't get better. Being suctioned makes his lungs worse but he constantly needs to be suctioned because of the secretions in his mouth and nose that he can't swallow.
It's not good. He is possibly looking at a life of being on a vent, eating through a hole in his stomach. Drooling constantly, having crossed eyes, a speech impediment. Maybe even being severely retarded, though there's no way to know if his brain is affected right now.
Never being able to smile. It breaks my heart to think that he can never smile. How cruel is that?
But again - if he can't breathe on his own, nothing else matters. I won't have my child live his whole life with a hole in his throat, hooked up to a ventilator. I just won't. And the chance of him getting off the vent is not good.
The doctors are going to try and get his lungs better and see if that helps, work on his chronic lung disease. If his lungs are better and he still can't breathe on his own then it's because of the Mobius and there's really nothing to do about it.
I am beyond sad. I am heartbroken. I am devastated. I'm angry at everyone and everything. I have lost faith. I will never be the same. I will never get over this. I want my baby. I want him to be healthy and breathing, and able to laugh and smile and LIVE.
He is so sweet, everyone who has met him falls in love with him. WHY would this happen to him? And now we have to try and decide what to do. No one should face the kinds of decisions we are facing. I am so mad at God. If he wanted Jack, why didn't he just take him? Why make him suffer, why make us all suffer. Then I think, maybe he doesn't want him, maybe he wants him to live his whole life like this.
Then I think, really, he did try to take him, time and time again. Jack has never taken a breath on his own. We are the ones who've kept him here. Maybe God is mad at me, I don't know. I just want what's best for Jack and today, I honestly have no idea what that is.
I just want to spend every moment with him. I want to see his little face without a tube or tape on it. I want to hug him without worrying I'm going to knock his tube out. I want I want I want.
I want to go back.
I keep staring at a picture PJ took during the babies' delivery. I never really looked at them, because they're kind of disgusting and I didn't really need to see my insides. But I noticed there is one of Jack, just as the doctors are pulling him out... he has nothing on his little face. His umbilical cord is still attached. It is the last moment before anyone knew anything was wrong, even the doctors. The last moment before everything changed forever. I want to go back and feel that moment again, have him whole and a part of me and perfect, even if just for that moment.
But I can't. All we can do is go forward. Keep going, for Jack and Katie and Charlotte. Maybe keep hoping for that miracle, though it hurts too much lately to hope anymore. Keep loving Jack as much and as hard as we can.