Par for the course

As I am writing this Gavin is upstairs having a giant meltdown (has been for a little while) and Emmett just spilled his chocolate milk ALL over the floor. Over the past few weeks I haven’t been posting as much because things are just getting more and more challenging. Finding the time to even post a quick blog has not been easy or honestly, even a priority. So, I’m trying to fix that for a couple of reasons. First, it’s my outlet, a safe place to vent and share my thoughts and feelings. Second, it’s important for people to understand just how “life” can impact a special needs family. So here’s to getting back on track 🙂

Remember I wrote about the van getting “fixed” about a week or so ago? It had been at the shop for a solid week after we were once again left stranded in a busy intersection when it stalled out and wouldn’t restart. The guys at Waterloo are really great and wanted to make sure they got it fixed correctly and that meant witnessing the malfunction so they can identify the actual problem. They are very aware of our “situation” and didn’t want to “nickle dime” anything cause they know we can’t afford it. It took the entire week but it finally stalled out on them and they were able to positively identify the fuel pump as the culprit. We suspected as much and even our friend Marc told us the very same thing. The problem was that when they would test it, it worked perfectly. Eventually they just parked it and let it run till it died. Hey, whatever works….right? We got the repairs done but it was $714. Bringing the total repairs so far to over $4000 in the last 8 months. We split it up over 4 months having to pay the first month up front, which was NOT easy and honestly, won’t be going forward. While they were replacing the fuel pump the Waterloo guys discovered a bunch of exposed wires in the main harness and repaired them at no expense to us. They are really professional and dedicated to getting the car up and running. However, this van has been a nightmare for both Waterloo and more obviously ourselves. Here’s the kicker, aside from the obvious expense, the Van is having “issues” once again. The check engine light came back on the other day, it runs pretty rough and now the drivers side and rear drivers side windows take turns NOT working.  One problem gets fixed only to have another one present itself. The cold hard truth is that the van just needs to go but we aren’t in a position to replace it either. So we’re just kind of stuck. I’ll have to return to Waterloo and see what they can find this time. We have to much long distance driving this summer between Akron Children’s and the Cleveland Clinic to not have this thing be safe. Honestly, long distance driving aside, I don’t want to put my family in a car that isn’t safe to drive.

I woke up this morning to our water being shut off. I spoke with the Canton Utilities office about a week and a half ago. I was trying to make arrangements so this didn’t happen. The nice lady I spoke with gave me the name of a local agency that could help us. She said that she would extend our account out a few weeks in order for us to find some help and avoid shut off. Apparently, someone didn’t get the memo. They also didn’t leave a note or even knock on the door. Typically, they will knock on someone’s door and hand them a shut off notice prior to shutting anything off. I called the utilities office this morning and the same nice lady told me that my account was notated and that this shouldn’t have happened. I wanted to make sure that there wasn’t something else going because no one came to our door and there was no shut off notice. She checked into it and said that someone came out this morning and shut it off at the street. She advised that I call the agency again and ask them for help. I did so and am awaiting a call back. Believe it or not, this is the very first time I have ever had a utility shut off. Some how I have always managed to stay a step ahead but as I said at the beginning, things are just getting more and more challenging. The only thing I have left that I can do at this point is to take our XBOX with Kinect into to Gamestop and get cash for it. That may be enough to cover the utilities but the kids really like using the Kinect so I’m going to keep trying to get some help. At least push comes to shove I have an option.

So there you have it. The transparency has returned. Look, when you are living on the brink of failure every day, it doesn’t take much to push you over the edge. Maybe your van breaks down for the umpteenth time or your child needs to be hospitalized for whatever reason and you have to make 10 or 12 trips back and forth to the children’s in the course of 4 days. Life can impact anyone, any family and at anytime. When you are a special needs family existing on a bubble, it doesn’t take much for that bubble to burst. The really scary thing is that this is only Monday and we have a whole week ahead….but it’s par for the course.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Onyx Panthyr

Same here. I'd hate for you to give up what little luxuries you guys have.