As I am sitting here writing this, my emotions are all over the place…great sadness, feeling crushed, anger, frustration, eagerness to fight on, huge failure, overwhelming fatigue. Many of you have kept up on our quest to get Raymond a way to communicate that uses his eyes….it is called the Tobii Eye Gaze System. It has been over a year since we requested the purchase through insurance…now two levels of appeals later, it was still denied. This fight has been one of the hardest fights of my life. After the initial 5 month trial last year in 2012 which prompted the purchase request, we had another trial with the device this past summer through the high school district, and Raymond did amazing! Even better than last year and he was able to navigate through more complex screen options using his eyes. He proved that his cognitive abilities are higher than previously accessed. But it seems that was not enough to warrant a purchase of this device by the insurance company as they suggested we use a manual eye gaze board. Please understand that what is coming from me right now is extreme frustration, because a manual eye gaze board is completely dependent on someone else presenting options to Raymond, it can only offer a few options and not always what he needs at the appropriate time of that need. That option does not give him any independence in what he “wants to say”; it does not give him a voice or the ability to get someone’s attention. Whereas the Tobii is a speech generating device that would say what he chooses….like for example, one screen that he used a lot at school this summer to greet his classmates by saying “What’s up?” or “Today is Legit!”
I don’t know what my next step will be, or where we will take this fight. And I know it seems weird that I use the word “fight”, but that seems like what this has been. It's been a total fight trying to get others to see the Raymond we know...not these physicians who come in and make an evaluation based solely on medical documentation but don’t spend time with him. He is a very complex kid…but there is a very bright kid caught inside a body that does not work well, a very bright kid who has so much love to give and continually reaches for goals that others would have given up on a long time ago, a kid who has so much drive for life….a kid who teaches us so much.
Our precious Raymond is a gift from our Lord, and I feel it in my heart that God’s will is for Raymond to one day communicate. All of my devotionals and scriptures lately have been speaking to my heart about trials and trusting our Lord. This morning I looked up Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.” As I am writing this down, I am letting go of my pain and I am feeling new strength. I will keep looking into other options, whether it is for funding or devices, and I will keep praying that the Lord will open up doors for Raymond to one day be able to express himself.
