This is one of those posts that some people will complain about for whatever reason. Maybe they feel it’s too negative or that I’m just looking for sympathy, but whatever. I’m writing this because keeping it inside is eating me alive and the only way I know how to process these feelings is to write about it.
I feel like I’m failing my family and whether it’s true or not is irrelevant because it’s how I feel.
As a parent, we all want what the best for our kids. As a special needs parent, there are so many things outside of my control and so many burdens I can’t take away from my kids, it makes everything else feel so much more important.
When I can’t take away my kids struggles, pain or in some cases, actual life threats, doing right by them in every other way is something that can become a focus. That’s especially true in my case because I have three kids that struggle with everyday life. The weight that puts on my heart and soul is unimaginable. There are few things in this world worse than watching one’s children suffer.
I cognitively understand that I can’t fix these things but that doesn’t make me feel any better about it.
As with most or many other special needs parents, I’m way harder on myself than I should be but nothing anyone can say will stop that, because it’s just how it is.
As for who or why I feel I’ve failed my family, there’s too many ways to speak of but they basically boil down to two things, financial and emotional.
The financial side of this is obvious. I can list a few big ones right off the top of my head:
- Loss of income
- Mounting bills because I can’t keep up, especially utilities
- I can’t replace our car that desperately needs replaced
- I can’t move my family to a safer neighborhood or at least make our property safer so the kids can play outside
- I need to replace furniture and appliances
- Random other major work that needs done both inside and outside the house
Those are just the things that are weighing heavy at the moment. As I’m writing this, Lizze and I are streaming a show cause we canceled our cable to save money. As we’re sitting here, our show and my writing was disrupted by gunfire. It’s not like we saw muzzle flashes or anything but it was close enough to make it way to fricking close.
What’s even worse is that we’re used it now. That’s terrible. I don’t want my kids growing up in fear. Hearing gunfire on a routine basis should never be okay or normalized.
All the rest of that stuff is the result of circumstance. We decided a long time ago that raising our kids, especially in regards to Gavin, required both of us. It’s simply too much for one person. Even taking everything on together, Lizze burned out and I often struggle on good days.
I’ve said this before and I’ll say it once again because I just took another hit as a result. The harassment I fell victim to on Facebook, that lead to my site being permantly banned, has significantly impacted our income. I’ve lost advertisers, partnerships and other paid jobs because nothing I do here can be liked or shared on Facebook. If anyone tries to share, they’re blocked from doing so with a message that my site is malicious. I didn’t do anything wrong and there is absolutely nothing malicious about this site but I can’t stop someone who continues to report everything I do as malicious. Facebook seems to have given up on fixing this. They fixed it the first dozen times but I can’t even get a reply anymore.
The bottom line is that I’m failing to provide for my family. I suppose at the end of the day, the reasons why don’t matter.
Even worse than the financial side of things is the emotional side of things.
I’m no longer the rock I once was. I’m crumbling under the weight of everything and there are more and more days that I struggle to keep my head above water. Sure, some of it’s depression related. I’m talking to someone about that and following up with my doctor to possibly revisit medication.
Here’s the reality, there’s no medication that is going to make my life easier to deal with. There’s simply too much to keep up with. In the last few days we learned that Gavin’s IVIG meds are no longer available and we have to figure something out ASAP. He has one, single dose left and then nothing.
I’m reasonably sure we’ll potentially have a working solution after our emergency appointment with his immunologist on Monday, but nothing is for certain. There are too many unknowns and so many things that could go very wrong. I’m a fricking basket case right now.
I’ve got pending utility bills that I can’t take care of and while they’re extremely important and I should be trying to figure them out, all I can think about is Gavin’s current medical crisis.
What can we replace his life saving medication with?
What happens if the new medication isn’t effective?
What happens if his body doesn’t cope well with it?
What happens if it triggers an Autonomic crisis?
What happens if he gets sick?
What happens if everything is good but insurance won’t pay for it?
The questions are very practical and the fears are realistic. Questions like this just keep playing on repeat in my brain. I can’t shut them off.
I’m not as emotionally sound as I should be and it impacts what I have to give Lizze or the boys. I don’t know how to let some of these things go. In talking with a counselor, it’s difficult to make this go away because they aren’t unrealistic fears. They aren’t anything aren’t anything that hasn’t already happened to us at some point and created chaos.
I need to exhale and I can’t figure out how to do that. Until I do and/or until I can better cope, I feel like I’m letting my family down. I’m not emotionally there for them the way they need me or the way I should be. I’m short on patience, preoccupied and not sleeping. That’s not a good combination and to make things even worse, Father’s Day is around the corner. It seems like a reminder of all I’m failing at. I don’t feel like I deserve the day. In a way, it’s almost worse that my family thinks I am.
Maybe this is the depression talking. Perhaps it’s physical and emotional exhaustion. Either way, it feels so real to me and at least for this moment in time, I can’t work my way through it.
I feel like there’s clock in the back of my head and it’s ticking down. It’s like a countdown and I have to figure everything out before time expires.
Look, I know this is depressing to read because it’s depressing to write it. Actually it’s overwhelming to write this because I haven’t put words to these feelings in a very long time. It’s not meant to be self-loathing or an attention grab. I don’t know how else to process these feelings and maybe someone will be helped by this. I hear from people all the time who read something I’ve written and have found comfort in my words.
Being this honest makes me vulnerable but at the same time, it also helps me to process things when I otherwise can’t. I don’t need validation for anything I’m feeling so it’s more about putting this out there and being able to walk away from it. The more things I can find a way to out down, the more I can pick back up for my family.