Getting ready for another sleepless night. It is the time of year again for sleep deprived EEG‘s and MRI’s. We try to get them all done at once and just get it over with. The brain is such an amazing organ. While we see daily the devastation that prenatal exposure to alcohol creates we also see the resilience of the brain and the person. For people who have FASD (Fetal Alcohol Spectrum Disorder) life can be hard but they persevere in ways that some days seem truly miraculous. I watch as my children work through things that the world never thought would be possible for them. They not only find ways to accomplish these things but they discover new ways to do it. Like my daughter whose CP (Cerebral Palsy) is so severe due to her withdrawal causing a seizure that lasted over 25 minutes and caused even more brain injury. She has found a way to prop herself up to “sit”. Okay so to the world’s definition of sitting she isn’t doing it right or well or whatever but who cares…she sits in her own way. She is happy that she feels she accomplished this and so we are thrilled for her. She also has a modified crawl/swim. She can get around using this. So what if it isn’t the most coordinated movements…she is moving and we were told she never would.
The fact is that while I hope that other children will be saved the pain of the disorder that is FASD I know that my children are still fighters and that every day I get to watch this. Some people ask my father if he wished his grandchildren were “normal”. He laughs at this. He asks what is normal anyway and then reassures them that he feels normal would be entirely boring. After all who knew that screams and grunts could be a language all its own as he discovered with our son “A” who was shaken during his withdrawal as his parent could no longer stand his screams. He now communicates with his papa and they have a great old time. I know that some people question why we would adopt children who aren’t “normal”…well I guess in the beginning this isn’t where we thought we would be honestly but I also have to say that now I truly cannot imagine being anywhere else. Our children show us everyday what it really means to love and be loved. They love us with all they have to give and then some. They remind me that they are by far more than a diagnosis or any “disability” that the world defines them as. They are teaching me day by day and I am so glad to be here to learn it all.