No, I did not just misspell "be" in the title. B is what we call my daughter. She is 11 years old and is the point around which this blog shall focus.
If you met my daughter, you would think her to be very sweet, regular child, perhaps a bit young for her age. There is no fault there, that is what she seems like, and even people who come to know her often fall prone to forgetting that she is a sweet and irregular child (I say this with love, I am an irregular Mom). You cannot see her disabilities. She is not in a wheelchair, she does not use a cane, she is not missing an appendage. Like millions of other children and adults, her disabilities are invisible, and although to her and I the disability is as real and palpable as a wheelchair, I have grown to accept, if not appreciate, that others can't see it.
My daughter had a stroke about four hours before birth. Infant stroke is a rare occurrence, however, it happens more than you are likely aware of, about 2.4 out of 100,000 children a year suffer from a stroke.
The causes are not always identifiable, but in B's case it is thought that a blood clot that formed in a vein near her liver is the culprit, and that a piece of that broke off and travelled to her brain. Why she developed this clot is not clear, as neither of us has a clotting disorder. She did, and now that is all that matters, because it cannot be undone.
The result is a large area of brain damage, in the right occipital lobe and surrounding areas. Here is a complete listing of the resulting conditions: severe and poorly controlled epilepsy, anxiety, impaired gross and fine motor skills, cognitive delay, missing sight and hearing on the left side, ADD, symptoms similar to Non Verbal Learning disability, sleep disorder, and a younger emotional age.
I will make an entry about each of these, or else this post will become a novel. Before I end this post, I want to list her strengths: she is strongly empathetic, has a wonderful sense of humour, and she reads voraciously. She started reading at two, when she could name her alphabet randomly from magnets on the fridge. She still spends hours playing with the letters on the fridge. As a result she has an amazing and appealing vocabulary.
My hope is that this blog will help educate people about children like my daughter, can be a way that I share all that I have learned with others, and that others will share what they have learned with me. I hope to do this with humour and compassion. Please join us.