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.
2. Everything Lizze and again funding the many out of town trips for health related issues.
3. How everything Lizze and Gavin is impacting the other boys.
4. Elliott’s emotional and physical health.
5. Saving our home, which we are currently losing.
6. Saving our car, which we are currently losing.
7. My own health related issues
8. Not letting what’s going on with the house, affect the family members we are renting from, anymore than absolutely necessary.
9. Getting the house organized and the laundry/dishes caught up.
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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I’m so sorry that you are in the situation that you are in, I’m just writing for support. Clearly, only you can truly appreciate your difficulties and I’m not even trying to pretend I can understand what it’s like to be in your situation. I just wanted to write with respect to your feelings of guilt over things that are out of your control. I totally get that, however, I think you need to let go the guilt feelings as much as you possibly can. You clearly didn’t cause any of the issues (health, autism, etc) that your kids have and you are trying to do your very best. I think the common thread here is that all parents only want the very best for their children and the bar is impossibly high and no matter what you do a lot of things are simply out of our control. Kids aren’t born as completely empty slates, perfect in all respects. They all have their innate issues, problems, dispositions. It has helped me as a parent to realize that the best I can do is accept the predispositions my kids have and help them along in their lives. There are things we will never be able to change. All you can do is lead your kids along on their path, and I really think the kids own their lives and their paths, all we can do is chaperone them along, we cannot alter things beyond our control and change them fundamentally into different people, and that’s ok. We are basically along for the ride and we can help, but they have to develop according to their own predispositions. Good luck!
VM thank you. 🙂
I second the pp’s questions and want to add some of my own. Please know these are only out of utmost concern and not judgement and also that I live in Canada so I’m aware services vary. Here we have something called “affordable housing” (right in our neighbourhood, in fact). As a family with so many special needs and health issues, you’d be accelarated to the top of the waiting list. You are granted a place to live (a town home, based on the size of your family) and would have to pay an income-based rent (or disability pension, etc). You would also have access to a social worker to help you navigate paper work and apply for all the services you need to survive comfortably. A family is not left to starve like this. Please excuse my ignorance, but is the “wraparound team” not have similar goals? Where is the disconnect? Oh and also here a family with documented special needs gets financial assistance for various things, including transportation vouchers for appointments, (you have to apply for this too).
I wish you all the best, but are wondering if there aren’t any community programs you could tap into.
Sophiestrains here in the US we have section 8 housing, as well as a program called HUD, both are income based.
Sophiestrains I’m aware of the section 8 housing options and when we’ve checked into them in the past, it’s been a very, very long wait list. The problem for me is that we seem to fall in between agencies. Essentially, no one knows how to help us if that makes sense.. I truly appreciate your help and I didn’t take it the wrong way. You were very well spoken, thank you.
When you write these heart-wrenching posts I wonder two things. What good is the wrap-around group? Near as I can tell those meetings just take up time, but don’t really help you. Secondly, does your family realize just how badly you need financial help? Emotional support?
This week Oklahoma is in the news due to the tornado catastrophe. Rightfully so, people all over the country will open their pocketbooks and send donations. Why don’t people help their own families? I just don’t get it. (I’m referring to your extended family.)
hudginsvicky you raise a good point. The wraparound is more to help us with the Gavin stuff. Unfortunately, we need way more help than that. Our parents help out as much as they possibly can but no one has the means to fix the problem. I will say that I’m the oldest of 6 kids and I’ve been there for each one of my brothers and sisters, every time they’ve needed something. We don’t even get a phone call, unless they need something.
Sometimes, giving of one’s time can help in ways that money can’t.