The neurologist took a bunch of notes then ordered MRIs of her head and spine (for the spina bifida occulta). It was quite an experience, she hated being sedated. They did her brain first, then had to move her around to do her spine. She stayed asleep for both. Her brain was very normal looking, but her spine showed that she indeed had spina bifida occulta. The neurologist said that the damage was significant for that type of spina bifida, and if it was the next vertebrae up, that she might not have walked. Her bladder and bowel sensations are reduced, meaning that when she says she has to go, that means now. Other than that there were no physical findings from his testing. Here's the fun part. The hypotonia and intellectual issues are symptoms of a neurological disorder. But they can't find it or explain it. We might not ever know the cause.
Let me just stop here to say I was disappointed. During the years that she recieved negligable medical care, I had built up in my head that things would be different with a "real" doctor. They would find her problem and fix it. Like magic. Well folks, there are no fairies and unicorns in this story. After all the doctors and all the tests, her diagnoses are just mostly symptoms. It was explained to me like this. All it takes is one light on a string of 200 to be burned out to keep the whole string from lighting up. You may never figure out which lightbulb is out. That's how neurological stuff can be, only times a thousand. And that one little bit of offness can change everything.
I became an angry person at this time. She still had a mixed bag of problems. It seemed like they were connected to each other somewhere but no one knew how. The genetecist couldn't figure her out. Tests had been done by an assortment of doctors that knew what they were doing, but still no real answers. My anger wasn't directed at the ones that tried to help. It was directed at the doctors in the military. Two things happened that set me off. One doctor told me that there were tests that should have been done within the first couple of years of her life that might have given them more to work with. Another told me that she should have had "medically relevant" therapies from birth. Hearing those things brought out the mother bear in me like never before.
There wasn't an attorney that would sue them. According to the law, I could make them pay as a civillian dependant on behalf of my civilian dependant child. But the military has endless resources and because we weren't dealing with tangible injuries there would be no lawsuit. I still wanted them to pay, and to never do this to anyone ever again. God was out of this equation for me. I didn't seek Him, ask for grace or peace or mercy. There was no forgiveness in my heart for those doctors. None at all.
One day I felt so heavy with it all that I finally prayed and asked God to help me deal with it all. I had always prayed for my children and especially for needs that they had, but not to ask for help in dealing with this all. You aren't going to believe me about what happened next, it sounds a little corny and made up. I was praying at my computer. When my prayer was over I opened my eyes and focused on a photo next to me. It was of my three children when they were babies. They were literally babies all at once. We had three in 37 months, our two girls first then our son. At that moment it hit me. If we had known everything there was to know about our youngest daughter's issues we would have made the decision to not have anymore children. We probably would have done something permanent. At that moment I focused on that picture I saw my son. The one we would have never had if we had known then what we knew now. If those doctors had done what I wanted them to do, we wouldn't have had him. My anger was gone. Just gone.
That was an awesome moment and an awesome realization for me. It's when I" let go and let God" for the first time in a long time. He had given me so many gifts and I was unable to appreciate them fully because I was wrapped up in months of anger. It was still going to be hard. Days came of sheer despair, we still have a few of those now and then. The difference is that He's in it with me. God has come through with that grace and peace and mercy. He's given us so many gifts along the way that are clearly and miraculously from Him alone. Oh, and I've never sued anyone.
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