I have plenty to write about but it seems that 'time' is somewhat in the way or possibly 'time management' is an issue. I wish I could sit down everyday and write about all of the things that have been going on but it takes me so long to keep my writing compact and succinct. This requires real effort for me and I actually am writing this now as an exercise to keep things moving.
So here we are. Elias will have his fifth birthday coming in February. We really didn't think that we would see his forth. Elias is on more support than we ever thought we would subject him to and we have been faced with impossible decisions lately. Up until now it seems that things have been more obvious such as a feeding tube, medicines to stop seizures, etc. You either did it or you didn't otherwise he would not thrive. Sounds simple writing about it, but I assure you that it was anything but. It's just a more obvious choice. Doctors all have their opinions and they are not all the same. "Surprise", I know! Who is there to help navigate through the world of medicine, science, procedures,etc.? There is no one person that can pull everything together and make sense of it for you. Much of what is being done today is relatively new and with a extremely rare disease like Krabbe, we are left to synthesize all of the information mostly on are own, at the end of the day. We are not doctors so how should we know what is best? All we have is intuition, and I thank God that He gave me a healthy dose of that. But sometimes that is clearly not enough and what we could really use is clairvoyance. We are in a place where there is not exactly a right or wrong, or so I am told. We have been facing the prospects of having a trach put in for Elias. He is doing fairly well for now, and so I gravitate toward putting it off. Not sure how it would help him. At first it seemed to be an obvious choice, but then various doctors and 'experts' chimed in and there seemed to be no shortage of opinions, blatant and subtle. The result; fear, anxiety, confusion, lack of clarity. I want the impossible, I want time, I want to eradicate disease from my life. Instead I receive choice, my own reflection, and illness in its various physical and spiritual forms. And of course 'silence'; lets not forget this. It is about absence and a thing called 'free will'. The answer and the curse. What the hell is 'free will' anyway? I was not free to be born, Elias is not free. Books and theology about this topic help very little at this point. We navigate what we can and understand so little. I think we have misunderstood 'free will' or 'freedom', especially in this country. We are seldom free to decide very much. Free to become what we should, I suppose but With obstacles in the way this seems impossible. But something tells us to try, so this is what I do. Living now, not trying to figure out what the future holds and trying not to regret. and so I gaze and am mesmerized at the beauty within even the worst circumstances.