Two years ago we were telling Victoria that the reason she needed brain surgery was because her brain was too big to fit into her skull. Yep-That came back to bite us but we were completely new to the whole let's explain brain surgery to a 6 year old thing. Although two years out and part of me would still stick with that explanation.
So where are we after two years? In my opinion still in a really good place. Is Victoria headache free? Nope. She still deals with the occasional headache. Sometimes we know why sometimes we don't. Does she still have leg pain, insomnia, exhaustion, swallowing problems, or eye issues? Nope. Does she still have the occasional bouts with brain fog, memory lapses and neck pain? Yes, but they are so infrequent that we just note them and move on.
Two years out and Victoria is finally talking about brain surgery, her scar, her memories and her feelings about surgery. In my mind that is progress. After two years Victoria is more aware of her body and tends to listen to her body instead of ignoring warning signs. That is a huge step for an 8 year old.
At the end of the day my little Chiari Warrior has her life back and she is enjoying every minute.
Where are Mom and Dad after two years? Hmmmm .... We are in a good place. Will we ever be able to relax and forget about Chiari? No we don't have the luxury of forgetting but we are learning to let go and trust Victoria and everything she knows. Hard lessons to learn to let go and not hover ... To trust her, her doctors and ourselves ... To let her just be a kid and try not to base every decision on her medical condition. The best I can tell you is that we are making progress in our areas-we aren't perfect but we are learning to appreciate what we have been given, count our blessings and live in the present.
Happy Belated Anniversary Victoria!!! Here is to many, many, many more outstanding decompression anniversaries!!