Time

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.

A long suffering beginning

I have been contemplating this for a couple of years, have messed around with different blog settings and designs, ideas, etc., but have never been satisfied nor knew how to start. In some ways one can only start where they are and I suppose that is the middle, where we all live. This is the only space where we have any choice, where we can be self determined- as much as possible. The only purpose I have is to tell a story, a perspective and I have no idea what will come of it. If it is only for myself and healing than this would be fine, but I also hope that at least one person would be edified by what I share or link. I am a father of three children, one of which was diagnosed with a rare genetic disorder around 4 years of age. My children are the reason for everything that I write, especially my dear Elias. If I had even a small measure of his strength I would be that much closer to divine. He reveals mysteries that I don't see how I could see any other way......

Most people will never have the pleasure of seeing this strength, because it is subtle and long suffering. It is quiet and unassuming. Elias, my son, is a child full of radiant beauty and he is the closest person to God that I have witnessed in the world. And so I dedicate this blog to Elias and to all who suffer and to those who realize that they will never have the answers but dare to become part of the answer..........

A second beginning, which is really the first, occurring in the middle

(written some months ago)
I have been playing with the idea of writing a blog for several years, not because I am worthy of saying anything important but as a way to hold in my memory the things which are happening around and within me. I want to look back at these times and catch a glimpse of the things that inspired me and the wonderful way that my son embodied love and gave it so freely. He has no choice and never will have a choice, at least not one that I can be certain about, and this is quite hard to reconcile with the idea of free will. I used to think that man had more freedom than I now believe to be true. From the moment we are born, we have either to much or to little, less than perfect genetics and minds and even for the best of us and no matter how much we know or think we know, it is still very little. We have parents and environment to contend with, varying degrees of mental illness, fear, anxiety, war, the list goes on. Elias is a rare gift, a mystery which reflects the beauty of man trapped in a world in which one wants to, hold on to and release simultaneously. For now he is a microcosm of the world, as are we all, but it is all the more clear with Elias. I will never be worthy of caring for him nor am I worthy on my own merit to walk this path which is dark but shimmering with hope.......