New Years Eve, Feat. Fireworks Through The Blinds

We had some plans for News Years Eve. Like many of the plans we make, they changed.  I’m not sure how the ‘constant change’ will eventually affect Elias’ older siblings but I don’t think they enjoy being pushed on to other people at the last minute. My daughter can’t stand it when we rearrange the furniture in the house, so one can imagine how she feels when the ‘rug’ is pulled out from under her feet. I suppose time will tell how things will play out, but not without many prayers for the best outcome.

Elias was breathing heavy all day. He’s bounced back many times before and typically breaths heavy every day, but not for this long and we can usually get him to settle down after some good suctioning and a good cough or two. This day nothing we could do would help and eventually we made are way to the hospital. It had been seven months, at this point, since the last visit and we were all feeling pretty comfortable with the consistency of being home, even if we couldn’t get out of the house together much, as a family. In these times, I can feel the control slide off my body into some unknown place and become replaced and infected with anxiety. I know this feeling too well and there is nothing I can do. I am the guardian and protector of my son and knowing that something will come between me and my son fills me with anxiety, fear and doubt. Many things already come and will eventually come between us; medical equipment, nurses, doctors and even the ground. It’s true that I have to live in the moment and I mostly do, it’s the only way to survive and keep pressing on, but I know that the future will be a ‘moment’ as well, even if it doesn’t exist now. I suppose that is why many people are anxious.

We arrived at the hospital some time in the late afternoon or early evening and went through the trauma room, mostly to be able to get up to the PICU faster rather than going through triage. A lot of the doctors and nurses know Elias by now and we called ahead, so there was somewhat of a preparation before we got there. The last time we were in the trauma bay, back in May, there was a teenager one curtain over that was screaming profanities and idle threats. I don’t know what was physically wrong with him but mental illness may have been the bigger issue. The doctors and hospital staff tell us all the time that they wish all the parents were like us. We don’t do anything special other than love our son and learn what he needs and then try to meet those needs to the best of our abilities. This makes me wonder what kinds of ‘hell’ they see everyday, but I think I have some idea. There are kids that live at the hospital, abandoned by the parents because no other facility  can hold them or is equipped for their needs. Unfortunately, the hospital is probably the best place for many of these kids, since the nurses here are pretty caring people, generally. At least they’re not being neglected or abused by their parents and there is some measure of stability. And if they were put in to a home, if one even existed for children; what kind of care would they get? People making minimum wage to take care of the most vulnerable and fragile children in our society will never be a situation that ends well. Comparably nurses are paid fairly well and have a higher level of education than people that work in group home settings, so it follows that the care would be better.

So here we are waiting out the storm of the affects of pneumonia on our poor child’s lungs, wondering when we can go home and how long he can stay at home after that. We are always reminded that one can not hold on to anything forever, but we do our best to forget this cruel fact and live where the present unfolds in a room, where once a year one can see the fireworks at the zoo. But now this is the past…….

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.......