2020 10 02 Friday Franciscans Day 4
Our lives during Covid Rules and Regulations. The invisible walls
Note from Friday Evening.
I have a knot on my stomach. I want and need to sleep but the anxieties dont allow for the restful, peaceful sleep that one needs. I have a knot in my stomach. I want and need to eat but my teeth clench down so hard that they wont allow me to.
Google maps says that there are dozens of places to eat near me, but I lay here in the back of Belas car and have no desire to take a step in any direction other than the direction that leads me to my kids bedside. Unfortunately I cant (by law) take those steps yet because its not yet my turn (I count the hours before I can relieve Bela). I have several bags full of snacks, microwavable meals, water, coffee, tea and sports drinks, but no desire to have any of it...I usually enjoy food, real food of course...not the kind of food that I can pull from a target bag, but right now I have no desire to eat nor drink. I know that I have to, and I will force myself to, but I have no desire to. It is not for lack of having stuff...it is lack of having the desire. I lay in the back of this car as if I am homeless, but I am not... I am very far from it. Materialistically I have everything that I need and too much more. I lay in the back of this car as if I am alone, but I am not...I have a huge loving family and a very large circle of friends that are at my side in spirit and would be at my side in person at the drop of a hat. I am blessed. I am. Very very blessed to have all that I have. I am blessed to have the love and the support of so many. I am so blessed to have all of the stuff...but all of it right now feels so useless. What good is all the "stuff"? What good is all of my cool, solid stuff when these invisible walls keep me from holding my childs hand or receiving that hug that at the same time is his physical therapy homework for sitting and standing ...but he doesnt know it. At this moment none of the stuff nor family nor friends can change the situation that I and my family are in.. Stuff is useless...friends and family however keep my hopes up and encourage me, lift me, keep me focused on the long term picture...yet the Invisible walls continue to keep me from being by my kids side to help and see him progress. We currently have these invisible walls set in place by the very important covid 19 CDC guidelines.I inderstand the rules, the regulations, the guidelines....they kist now make a truly truly fucked up situation so so so much worse. We have a health situation. My sons health is in need of medicine, physical therapy, occupational therapy, speech therapy, music therapy, professional care and most of all the love and the support of his mom, his dad, his brother, and family. Currently the rules say only 1 parent at a time and we can swap out 1x im the day. Only one parent can stay the night. We can have all types of cleaning crew, doctors, nurses, janitors, etc. But 2 parents cant be in the building at the same time. If moms in the room, Dads out in the parking lot and vice versa. It is such a tough time. I can handle Alex physically and his mom can handle him mentally. I could get him to work and cooperate, but moms the one with all the book smart degrees in all the schooling and special needs stuff. At all tomes now, one of us is stuck in a room with Alex independently, frustrated about how to help our child because the other cant be there at the same time to assist with normal day activities. The simple activity of bathing my son who currently cant do it for himself is now daddy and some stranger nurse who hides behind mask, goggles and full body gowns. This was a mom and dad thing, yet "from here on out" during this "forced stay", my autistic, special needs son, who just had traumatic brain injury due to unforseen, unpredicted issues in surgery and that was in a medically induced comma for well over thirty days, this is now how he will relearn life. He will begin to wake, he will again learn to sit, learn to walk, learn to talk, he will begin to see these walls that we are within as his new normal and this weird mommy and some face masked people or daddy and some face masked people will be this kids new normal. Well....in my mind, in my heart, in my soul. THIS BULLSHIT IS NOT NORMAL!!!!!!
They have psychologists on his team, the psychologists cant see that this goes against everything ever written?? studied?? researched??
I havent seen my sons soul nor charecter since before his surgery almost sixty something days ago. Today I lay in the back of a car (one of my stuff...so I guess that I miswrote earlier...this is one piece of materialism that is pretty damned important right now, if it wasnt for this car ide be sitting on the broken down rottwd wood, carpenter ant infested rail road tie wall with an umbrella unable to type this note on my phone because i need two thumbs to type, but one would be holding the umbrella). I lay here listening to the rain and praying harder than ever for my sons recovery, Im praying for his strength, praying for his courage. I need him to sit up, get up, walk, talk so that we can get out of this place.
I mean no disrespect to this place. I mean no disrespect to the people here, and I want nothing more than for us to all succeed together as a team. But right now this fucking place is just so dark and so lonely...It doesnt have to be...but it is.
There is that saying that "home is where the heart is". Anything or any place can be a house or a shelter. I am studied in Architecture and studied as an Architect. My business and profession was to make the spaces...the spaces are all great if you have a healthy happy heart, a healthy happy family. Try this...sit at your dining room table with your happy family, eat drink, tell stories...feel the space? It is a happy space. Now sit in that dining room alone...sit in silence...feel the emptiness...that space means nothing without the healthy happy family to fill it. When the room is filled with family the colors are brighter. Pull the families apart and the colors seem to fade.
I live for my boys. For me to be well, they need to be well. If They dont eat? I dont eat. If they hurt, I hurt. If they laugh....I laugh...
We are in a place. Due to covid there are invisible barriers. Invisible walls, social distancing, these guidelines force the businesses to follow CDC guidelines. The people here state that only 1 parent can be with the child and that a visitor may visit but
Only once a day and when visitor comes the parent needs to leave the building. They state that never can 2 parents be in the same room at rhe same time. Mom and I need to share time, swap out when convenient and communicate through notes on a bulletin board or by phone.
Right now Alex needs to make this place a home. When he is happy, I am happy. He isnt doing well with all of the strangers that come at him with masks, goggles and safety gowns, he is a kid, a scared kid, a kid in pain and know all this adds visual fear and trauma.
Alex needs to get better. We need to make things work. We are now pulling all stops and coming at this from every direction but need to wait. I lay here in this car, praying, begging for the answers that will make him what he needs to be.
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