I thought that since this blog is working once again, I’d get some sharing in while I can… I’m always looking to try and help provide insight and perspective to those in the world that have little or no experience living the life of a special needs parent.
The truth is that everyone experiences stress in their lives and stress is a very relative phenomenon.
I thought that I would share just a few of the things that have been stressing me out lately. Maybe you can relate, maybe you can’t. Either way, you can gain some perspective into my life.
In my life as a special needs parent, I have stressful days and nights.
Some days and nights are better than others but they are almost always stressful. To be completely honest, people seem to think that I handle stress really well. I’m always hearing from people that they “don’t know how I do it.”
I feel that I go through periods of time where I cope much better with stress and then there are times I don’t feel I can go on.
At the moment, I’m kinda in between both places.
I have an enormous amount of things on my plate at this point in time. It’s like I’ve been through the buffet of problems and my eyes were much, much bigger than my stomach.
Right now I have a great many things weighing really heavy on me.
Both Lizze and Gavin have health issues that affect everyone in the house. While Lizze’s aren’t life threatening in any way, she’s living in constant, debilitating pain and currently going through menopause at age 32.
Gavin on the other hand, has very, very serious and life threatening health issues. He seems to be relatively stable at the moment but that doesn’t matter because the bottom can drop out at any time and without any warning.
The other problem is Gavin’s mental health. To put it bluntly, he’s the perfect storm of mental illness.
Gavin’s currently both manic and psychotic. His mental health is a kin to trying to locate something underneath a body of water when someone has disturbed the mud and sediment at the bottom. The water becomes so murky you can’t see your own hand in front of your face. It’s impossible to navigate and you have no idea what direction to go in.
That’s what Gavin’s mental and physical health is like.
Even the very best experts in these respective fields are at a loss as to what should be done because they’ve not seen a child like Gavin before. The combination of issues makes him extremely complex and tedious, if not impossible to treat.
That doesn’t mean we won’t move mountains to try anyway, because we are and he’s absolutely worth it.
This weighs very, very heavy in me and I’m constantly worried about both Lizze and Gavin. I spend many a sleepless night worrying about what to do or if today will be the days that Gavin crashes.
I worry about the other two boys because they both have their share of challenges in front of them as well. Elliott is extremely anxious and has gotten to the point that it interferes with everyday life. His food allergies and fears of having to use his epipen, make it difficult to even feed him, uses its pizza.
Both boys are sensory nightmares and that only makes things more challenging for both them and us.
Emmett, we thought had outgrown his rare fever disorder, known as PFAPA. However, after an 8 month hiatus, the fever flares have returned with a vengeance.
Perhaps this is just a fluke and a one time thing.
He’s just now recovering from the worst flare of his young life. This one was so bad that he was in the hospital because we needed to make sure something else wasn’t going on. It’s horrible and heartbreaking to watch him suffer like that and not be able to help him.
I’m worried that these flares are back again and that this wasn’t just a fluke.
Then of course we have the material worries like our natural gas being shut off. We still haven’t managed to get it turned back on. This means no hot water or stove.
We are in a house that while we are grateful to have, is in a neighborhood that gone right down the crapper. We have gun, drug and gang violence spilling into our street. Isn’t not uncommon to be awoke by the sound of gunshots. From time to time, I can look outside my front window and witness drug deals going down.
It’s not safe enough to even walk the dogs. Recently, a gentleman was walking his dog and was shot in the chest. It was random and for no reason. A van pulled up, and just shot this poor guy, while he was walking his dog.
This is a huge, huge worry for me. I feel like we are trapped here and that the boys will never be able to have childhood where there can play outside and have fun, like kids should.
The list goes on and on and on.
We can’t forget all the headache that’s going into keeping this site up and running. The site is growing exponentially and that’s amazing. However, the downside is that I keep outgrowing the servers I’m on. Every time that happens, the costs double. If I don’t move, than my mission fails and the site goes down.
Lost and Tired is one of the only things that keeps me sane. I was down for a large part of yesterday and some of today. I think it’s fixed now but I’ve lost a ton of traffic as a result of being offline.
In the grand scheme of things, I suppose this isn’t that important but it’s something really important to me and I love being able to help others.
Perhaps this doesn’t seem like a lot. Remember when I said that stress is relative?
Anyway, that’s a brief look into what’s got me stressed out at the moment. Perhaps you can relate. Maybe you can’t. Either way, I hope this gives you some insight into how the other half lives.
This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉
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