At this moment, I’m hiding in my bedroom pretending for a few minutes that I have the luxury of quiting. Quiting everything and just running away..

Of course, I don’t have that luxury and even as I sit here, trying to be invisible, it’s clear as day that I can’t run away from anything, even if I truly wanted to.

I’m feeling so incredibly overwhelmed today.

What people just don’t seem to get is that there is no break. There is no end to any of this struggle.  There are no easy solutions to anything in our life.  In fact, I’ve said it many times before, but all to often all I can do is pick the best of the bad ideas and try to make something work. 

Please know that I’m not throwing a pity party for myself.  I’ve made it my mission to help people better understand and that requires transparency on my part. 

I’m committed to that transparency, even if it makes me look like a raving lunatic.

To get people to better understand our situation  and how I’m feeling, it’s important to relay my feelings in a way that allows others to step into my shoes for just a few minutes. Hopefully, the insight that’s gained by doing this can be applied by a reader to someone else in their life. 

With that said, there are a great many things weighing on me right now.

The following is a list of the most pressing issues that I’m facing as both a father and a husband. I’m listing them in the order they’re coming to mind because I think that lends to how they are impacting me, personally.

Here’s what’s on my plate right now. If you have a question about anything, please feel free to either ask for do a search on this blog to find the answers.

1. Everything Gavin and funding all the trips we have to make for his worsening fragile health.

10. At some point getting a break.

These are just the first 10 things that came to mind and it’s a pretty heavy list. Unfortunately, there simply isn’t an easy or even possible solution to address the majority of these things.

It’s really easy to sit back and say just do this or you’ll just have to do this. I assure you, if it was that easy or even possible, I would have done it already.

Every single day, I live with the knowledge that my son could, at literally any point, go into the hospital with an autonomic crisis (as he has many times since last year) and simply not come home. In order to even attempt to limit this risk, I have to stay on top of everything that he’s doing, all the time.

This is just one piece of the puzzle for him. There’s a million other things that are all consuming about his mental and physical health.

Sometimes people, families, fall into these grey areas where they can’t seem to escape from, regardless of how hard they try. We live smack dab in the middle of one of those grey areas and in truth, it’s a whole lot more like a friggin back hole than a grey area.

I’ve mentioned before that we are involved with community services via their wraparound program. We all kick around ideas from multiple perspectives and multiple agencies and there’s simply no answer.

The amount of stress I carry with me every single day is indescribable.

I can say that it’s crushing, suffocating and riddled with this thing called guilt.

Guilt is a bastard. A merciless, heartless bastard.

Ask any special needs parent and I bet you they could talk your ear off about guilt.

Not only do I carry the weight of all I mentioned above and more, I feel guilty about everything and I mean everything.

I feel guilty for it being able to fix Gavin’s health problems. I try to do the right thing with him but the things he has are so incredibly rare that no one knows what the right things are. I feel guilty about all the restrictions placed on his life due to these health problems. I feel guilty because we honestly don’t know how much time he has left. It could be a lifetime but most likely not, especially at the rate things are going with him.

As I said, I feel guilty for everything even if I have no control over it. It’s not rational but how much of parenting ever is?

Not only do I feel the stress of fruitlessly trying to save our home, I live with the guilt that I failed to maintain and not only does that impact my wife and kids but also my aunt and uncle from whom we are in the land contract with.

I could go on and on but it’s a pointless waste of energy.

There are so many times that I wish I could just quit fighting. I mean, it’s not getting us anywhere and it’s eating me alive.

The problem is that I have this innate sense of responsibility and I would never quit on my family. I suppose that’s not really a problem per say. It just makes quitting impossible.

I’m not in the frame of mind to listen to anyone tell me how I’m making big deal out of nothing or I’m just looking for attention. If those thoughts are present in your person after reading about my pain, please resist the urge to share them with me.

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