No, I did not abandon ship these last couple of weeks. I in fact lost my laptop charger (which is a story in and of itself) and call me old school or a spoiled brat, I prefer to only write my blogs on my laptop. So thanks to Amazon, I now have a new charger and I am back in business.
Today, I write this from my bed. Yes, it is 11ish in the morning and I am in bed, with my dogs, writing a blog. Definitely not my normal Saturday routine, but today, and for the weekend, this is where I plan to stay. This is the closest thing to downtime that I am going to get, and even this is getting me sulky looks from others who reside here, but other than Davids needs this weekend, I am going to concentrate on myself mentally, physically and spiritually.
This last week, some things occurred to me. One of those things was that I am not really a pleasure to be around right now. My body hurts, my brain cannot stay engaged for longer than a few minutes and emotionally/spiritually I am struggling. I am exhausted physically and this exhaustion is playing havoc with everything else. So yeah, here I am venting a bit.
Do not ever get me wrong though. I feel grateful everyday for David and all the many wonderful blessings he has brought to my life, but I also won't lie, being the parent of a special needs child can be tough at times. Add to that, being a widowed mother of a special needs child and you have a new layer of stress, frustration and even loneliness that a two parent partnership doesn't experience.
Also, I think sometimes people think I put my whole life out there for the world to see, but the reality is, there is so much that goes on in my life behind the scenes that doesn't even have to do with David, that I never share. Heck, even my own family and friends don't know my real life. If I am completely honest, at times, David is the least stressful part of my world. I juggle so much in my daily life above and beyond David, and apparently I do it well enough, that even those that live in my home don't always see it, or appreciate it.
On a good day, I can put on a smile, look for the positive and plow through the day fixing this, taking care of that, and putting out small fires before the entire structure of the family succumb to them. However, when something big happens, like the last few weeks with David, it becomes very evident that I am only one insignificant human being in all of this craziness and I am completely incapable of being all things for everyone in my little world. That is when my focus is squarely on David, and this is also where everything else starts to crumble from the cleanliness of my house, to the needs of the others who live in my house, to even the attention my dogs think they need. With all of this, I start feeling tremendous pressure to up my game and do better, until my body and mind just start giving out. This is where I currently am and have been all week if not longer.
The truth is, to be a special needs parent, you have to be built differently because you see and feel the world differently. In David's case, while he looks like a hot mess on paper, he typically does not need or even want a lot of attention from me. Yes, he "needs" me to lift him and do his basic care, but once those things are accomplished, he has his own routines he likes and he is very independent with them. It's not that he doesn't like or love me, because he does, but at times, my overt presence becomes an irritation to him and I can't tell you the number of times he kicks me out of his space. For me, it is a constant back-and-forth of am I doing too much or not enough for him? After a time though, we do get into a routine, until something like major seizure activity takes place, or kidney stones, sepsis, or an abscess rears their ugly heads. Then, that resets us to a completely different mode, a survival mode if you will, where he needs me more and yet really gets to hating my presence when it overrides his independence. Add in the pain, frustration and stress these cause him, along with his inability to tell me exactly how he feels, and by day's end, I think we both want to sit down and cry. There are literally days that I go to bed feeling like a failure to both him and everyone else in my home.
While David has been a lot of my current struggle, he certainly is not all of it. It feels like since early fall, I have been dealing with something. We of course had family situations that pop up from time to time and trying to keep everyone (myself included) calm and focused on the big picture and what is truly important, isn't always easy here. Then there was my brother. While I knew he was very sick, I didn't know that he would be gone before the holidays. That whole situation did things to me emotionally that I still have not had time to process. Then just the normal stress of the holidays and David developing the original abscess. Nov. 26th was the day it all started, taking us to Dec. 30th which firmly planted him in the hospital for almost two full weeks.
As I stated earlier, as a special needs mom, I am built differently. I have people ask, "Why don't you go home at night?" or "Can I come up and stay with David while you go home for a bit?" or the kindest of all, "Can I come up and sit with you awhile?" What people don't understand is that David is non-verbal so he can't express himself verbally if there is an issue. Also, sadly, in this day and age, his inability to speak makes him vulnerable to others with bad intentions or a poor or lazy work ethic. I WILL NEVER, leave David alone in the hospital. In fact, I don't even go to the cafeteria. The fact is though, because he is non-verbal and the hospital is usually short staffed, they don't want me to leave. They WANT me there.
While offering to come up and relieve me is incredibly kind, I can't or won't allow anyone else to do this for the same reasons. If something happened and they don't know Davids noises or signs, I don't want to put them, myself, or David in a situation where there is lasting guilt over an attempt at a kind act.
Finally, when I am at the hospital with David, I am in a very different headspace. I have spent so many nights alone in the hospital with David, that I don't know how to be with others there. It is uncomfortable trying to make small talk and my brain shuts down and it just becomes exhausting. Even my family understand this and other than possibly bringing up some necessities from home, they don't even come up to the hospital. Weird yes, but it is how we roll in the hospital.
As per usual, David's abscess didn't come without extenuating circumstances. Before the abscess was found, David had been scheduled to have his VNS (which is an implant that regulates his seizures) changed out as the battery was about to die. It was to happen on the 29th I believe. Once the abscess was found and he had infection in his body, the surgery could not take place until all infection was gone. It was believed it would be fine though as he was expected to have enough battery to get through until the first of the year. As we know though, he is still struggling with the infection and the VNS will likely not get replaced until March or later. What this means is that he no longer has the VNS to stop or head off any seizure activity he has, so on top of everything else, I have to constantly monitor him for seizure tells that mean his well controlled seizures might start up again and we have no idea how those seizures might manifest. Yes, an added layer of stress. But that's not all.
Davids teeth have never had decay, but he has not been able to see a dentist in a couple of years because he has to be sedated for any dental proceedure and because of insurance, the anestesia team at his usual dentist (and the only one who sedates) would not accept his insurance. Then, in November, I was informed that they would now see him again. We were all set to go in, and just in time, as his front tooth had suddenly developed decay, but guess what? They can't see him until all of the infection is gone. And another layer of stress as I pray the tooth doesn't develope an abscess before it can be taken care of.
Finally, as part of his at home care, David has a PICC line in which he has to be given two IV antibiotics every day. Guess who gets to do that? Yep! That's right! The woman with not an ounce of medical training. Did you know that an LPN is not allowed to give IV meds through a PICC line, but me with no training, is not only expected to do so, but also expected not to set up any knew infection while doing so. Ain't that some sh*t! And it is a process. The meds must be given the same time everyday with saline flush given several times in the course of the process, along with timed push for each med and finishing off with heparin. I literally sweat blood each time making sure I clean the port thoroughly with alcohol before each push and making sure there are no air bubbles in the syringes. To say it is the least favorite time of my day would not be an exaggeration.
So as you see, my stress is still very high, even as David heals.
I don't dislike my life, nor do I regret the path laid out for me thus far. However, I am tired. While most of my friends are retiring and planning on vacations and new adventures, I am fully aware that their lives will never be mine. My life will always be waiting for the other shoe to drop, doctors, hospitals, worrying about how much longer my van will hold out, making sure I can stretch my fixed income to pay the bills, and lets not forget.....good old family drama. On most days, I don't even realize how different my life is from others, but coming off the last few months and feeling all of it clear to my soul without being able to have the time or space to process most of it, may just be getting to me a bit. Thus, my weekend in bed/semi vacation.
It is my hope that after some rest and relaxing my back a bit, that come Monday, I will be back to the usual me who sees things with a positive spin and a go get em attitude.
Thanks for letting me vent and please don't hold my imperfctions in life against me. I am not strong, nor fearless, nor great in any manner. I am just a special needs mom who has no choice but to fly by the seat of her pants and figure it out as she goes along, and truth be told, I wouldn't have it any other way.
Until next time.......
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