B's Experience project - be forewarned it's long | gdgtgrl's Blog

In response to some of my friends, here is my daughter’s story.  
My husband was a paramedic working out of the hospital she was born in on the day she was born, in fact I remember him telling me that the stench of alcohol permeated the delivery room. At that time, we were just beginning to determine the cause of our infertility, and the thought of something like that absolutely incensed us. Her first ride in an ambulance was with him the next day to a larger hospital. She went home with her birth mom, and we thought nothing more of it and continued our lives.
Flash forward about two years or so. We were about to discover what the cause of our infertility was and take our first steps toward assisted conception. One November day in church, a friend of ours brought the girl she was fostering to church. I fell in love the moment he picked her up and briskly swung her back and forth – she giggled one of her infectious giggles. This friend also mentioned that the worker felt that a new life for her was best. She would likely be adopted out of the county since our county was small and to maintain confidentiality, she would be switched with a child from another county.  Boxing day, this friend asked us to do relief fostering as she was going for surgery. With our backgrounds in paramedicine and developmental services, we agreed without hesitation. Later, when we approached her social worker with the prospect of adopting her, the authorities saw what our friend did; the process of adoption began.
From the day she moved in, until just following her 7th birthday, life was good for her. She discovered many new things. Swimming was a must as we have a cottage on a small island. Her first trip to that same island that summer became known as the summer B woke up. Up to that point, she was growing but not a lot. After her first cottage trip, she grew by leaps and bounds. She found 3 grandmas and 2 grandpas to be spoiled by, learned how to sign and count and discover new things. She fell in love with Bananas in Pyjamas, Veggie Tales and Little House.  She found music and therapeutic horseback riding and loved both.
We noticed in the spring before she turned 7 that she wasn’t using her right arm, and was possibly losing some skills. The September after she turned 7, she was on her way to school on the bus, when she threw up. We didn’t think too much of it. She returned home, and slept for four hours. In those four hours, without knowing it, all our lives would change forever.    During that time, the unknown stroke she suffered on the bus would take her vision, memory of sign language, and other sensory related areas of her brain. 
She has Moyamoya syndrome, a rare syndrome that causes the arteries receiving blood to the back of her brain to narrow to the point where no oxygen is received. That September, her brain simply shorted out. 
This syndrome is so rare; it took 4 months for anyone to figure out what was going on. Once we found out though, there was little time to grieve. We began the process of rehabilitation and orientation and mobility and teaching our now blind daughter how to be blind. Two brain surgeries to re-establish blood flow would follow.  During that time though, it was hell on earth. Not able to say she was scared and frustrated, she bit her and repeatedly and took awful tantrums. She was put on a popular anti psychotic which helped but took her giggles and personality.
Then, one year after her live changed, it changed again. From the point that she lost her vision, the prospect of going to a residential school in my own hometown was a possibility, but how could I someone who was against instutionalization, send my only child away. Once we visited the school though, we knew it was right. There was a lot for her to do there. She would have a life. She would have to return every weekend since the school closed for students Friday at 11:30. She would also be home Christmas, March Break and all summer – the school ran basically on the same schedule as local schools. Since her needs couldn’t be met in our local board, she would be bussed each week. Because she didn’t use her own hearing functionally, she was labelled deaf/blind. 
To say that the first 4 months at that school were difficult would be an understatement. Stories are told of staff being assigned her 1 -1 each day. They worked only with her, and provided an insurmountable foe to her stubborn ways. A child of the system, she learned very quickly that it was easier for someone to do things for her. Not so now – she was blind and had to adjust to that.
After her first Christmas at home again, things evened out though. She became the same girl we loved before.  By May of that year, she was weaned off the drug, and our girl was back. Stubborn still and blind for ever but back.  
Each day she continues to grow. She rides again, still loves music and has developed a love for woodworking and roller coasters. She now uses her hearing quite well, and only has difficulty in large situations.  She is a typical teenager for the most part – developmentally about 8 or 9, but happy, giggly and ours.
When I say she is my hero – this is why.