I mentioned in the previous post that I was in a weird place. I also said I would talk about it in the next post because I needed to sort my thoughts and find my words.
Here’s the thing, my thoughts are all over the place right now and the words to describe where I’m at are still elusive.
I’m far from the only person going through this and I’m constantly being told that I express what so many others are feeling but never say out loud. My hope is to help those of you who may read this read this and relate, to take comfort in the knowledge they aren’t alone in their struggle. To everyone else, I hope the insight helps you to better understand how special needs families can struggle.
I could describe how I’m feeling as overwhelmed, exhausted, frustrated, demoralized and even depressed. All of these words are accurate but it’s more complicated than that.
One of the many struggles I face as a special needs parent, is triaging life. Maybe that sounds weird but all I mean is that I struggle to prioritize things.
We all have to have our priorities and thoughout each day, we are constantly shifting things around and re-prioritizing as needed. We all do it because life is constantly evolving around us, and we have to adapt our approach accordingly or be trampled by it.
As an Autism and Special Needs parent, I’m not different.
The problem that I run into, is that there are too many priorities in my life. Sure, some things can be placed on the back burner but many others must remain an absolute priority. That makes sense right?
What do you do however, when there are simply too many things that need to be absolute priorities?
That’s where I find myself, pretty much every single day of my life. I’m overwhelmed because at any given time, there are simply too many things that need my undivided attention.
I have to prioritize all health and mental health related issues. Those aren’t things that can be brushed aside, especially in Gavin’s case.
Every day when I wake up, I see my family struggling in many ways and each day I put each as a priority. Unfortunately, there’s only one of me and four of them. Everyone struggles in their own way. Some struggle in less serious ways but their struggles are no less important than anyone else’s.
Even if I was enough to meet the needs of everyone in my family, which I’m not by a long shot, that would leave room for nothing else.
I always say that context is very important because it helps to frame things in a way that makes them easier to understand. In order to make this resonate or make more sense, I’m going to share some more specific examples of what I’m talking about here.
Here’s a list of my current priorities, in so specific order:
- Gavin’s everything
- Lizze’s, untreatable, debilitating daily migraines
- Elliott’s emotional struggles
- Emmett’s health and emotional health struggles
- My own personal health and emotional health struggles
- Extremely important, out of town doctors appointments are dramatically increasing in frequency over the next few weeks and months
- Making it through the next several procedures Gavin must have done
- Meeting the financial demands of my family
- Our marriage
I prioritize these because they are either critical, life threatening or at the very least, life altering in nature. They often involve physical/emotional suffering or distress and I can’t stand by doing nothing.
At the same time, there are a million other things that are important in other ways and even in some cases, critical to our survival but not necessarily life threatening:
Here’s a few examples:
- Our car is on its last leg and needs replaced ASAP
- We have to finish the guardianship process for Gavin
- Unpaid bills that are mounting because of a recent hit to our income
- Our house is falling apart, both inside and out
- Our yard needs major work
- Our fence needs replaced in order to make the yard safer
- The kids don’t feel safe living in our neighborhood
- We need a new stove and as well as a couple other major appliances
- While I hate the word normal, despite the struggles, we still need to try and normalize our life by doing regular things like sometimes going to a movie or out to dinner as a family
These are just a few examples of things that are constantly pulling at my attention as well. While they aren’t necessarily as critical as the first list, they’re still very important.
What ends up happening is I find myself waging an internal war, as I try to figure out how to make everything a priority and still get anything done.
Back in the Lost and Tired days, I was frequently quoted as saying that if everything is a priority, than nothing really is. It’s true because if everything is mission critical, than nothing can be put on a back burner. If nothing can be put on a back burner, than nothing will ever get done or get done in any meaningful way.
On most nights, I struggle to fall asleep because my brain just keeps shuffling through a playlist of all the things I need to do but will never get done.
The best I can do is never enough and choosing what to take on, often requires me to choose between people I love. It’s unfair and impossible at times to choose. Everyone needs to be a priority in my life but as a special needs parent, that means at times, they each need all I have to offer.
If you’re doing the math on that and realize that it’s impossible to make the numbers work, you’ve just gained insight into my every day struggle.
I’ve struggled with Depression for most of my life and that in and of itself is a constant challenge. I’ve gained weight that I’m working to lose and frankly, I’m not even comfortable in my own skin sometimes.
It’s quite easy for people on the outside to look through the window I’ve opened up into our lives and decide that I’ve made a bad decision or there are things I still haven’t been able accomplish that in their opinion, I should have.
While they may be right on the surface, beneath the surface it’s nowhere near as simple as it’s believed to be. If it was, those things in questions would have already been done and checked off my to do list a long time ago.
It’s exhausting and demoralizing trying to figure all these things out, knowing that I simply can’t make it all work. Someone is always going to be let down. If I do manage to figure something out, life changes and I have to start over.
I’m depressed, overwhelmed and very much wanting the ride to stop, because I need a fucking break. I need to regroup and catch my breath.