I suppose that when reading about parenting B it is easy to feel overwhelmed by the large scope of her disabilities. It is quite a lot, with the doctors and the meds and the difficulty we face in accomplishing even day to day things. For instance, most twelve year olds have been doing things like washing and dressing themselves for quite awhile, and B doesn't do those things without direct supervision and considerable help. Largely, that's a memory issue. You can't say to her, "Go get your clothes and put them on," because most of the time she can't find the room she needs to be in, doesn't remember what she was supposed to get when she gets there, and needs constant prompts to do what she needs to do even when everything has been arranged and provided. That's just our life.
Every single day, no matter what is happening, I feel overwhelming joy in being her mother, and I am always keenly aware that she is really doing remarkably well. The area of injury to her brain is very substantial, over half of the right side of her brain. It is not exaggeration to say that if you or I suffered such a loss we would be suffering a much greater loss of function with truly significant impairment. Babies have an advantage, they have a clean slate of a brain, whereas we, as adults, have mapped our neural pathways. It is much harder to remap those pathways than it is to map them the first time, even if you need to map around a large injury. So babies can fair better after having a stroke than adults.
But not always. B's pediatrician told me that he has patients with smaller injuries that are worse off, and ones with larger ones, like B, that do better. There is no way of predicting what the outcome will be, and I have always felt, although he has never said outright, that B is doing way better than anticipated given the size of her injury. This is due, I suspect, to the fact that her injury is from roughly the middle of her brain to the back. If it was at the front, where the higher cognitive skills are, I think she would be more delayed.
There are areas that are just gone, and no amount of mapping around them will replace them. The occipital lobe is at the back of the brain, and she will never have full vision in her left eye (the right side of the brain controls the left side of your body and vice verse). Also, the areas that process sensory and motor control, which affect spatial reasoning, well, their injuries will be permanent. While I expect we will always TRY to help her develop these areas, I also accept that adaptations must be made. I have become really good at letting go of expectations.
So, all things considered, I absolutely know on a daily basis just how lucky I am. She lived through a terrible health crisis when she was born, grew and hit milestones when she was a baby. Perhaps later than most, but she hit them. And she continues to grow everyday, developing insight, and knowledge, and a really keen sense of humour. And I am thankful to her, because being her parent has been an extraordinary challenge, one that has made me grow up, become kinder, and learn when and how to let go of expectations.
And none of that means that I don't experience stress from having so much to deal with, or sadness at realising the space that has grown between her and my friends' children as they pass her by in development. It just means that it is absolutely worth it.