Being a Special Needs parent has been so heartbreaking recently

I write a great deal about being an Autism and Special Needs Parent. I’ve done this for close to a decade now and I don’t plan on quiting anytime soon. There’s a tremendous need for awareness and by sharing our story, it helps others to understand.

One of the things I’m struggling with right now has to do with Gavin, my 18 year old with many serious Special Needs. His needs are both of the physical and emotional variety.

The most pressing matter at the moment is in regards to his physical health. Gavin has several life threatening health problems and they are very consuming for me as a parent.

Currently, Gavin has been having issues with his blood, more specifically, the cell counts in his blood. In a nutshell, Gavin’s numbers have been crashing, sorta recovering before crashing again. There’s no rhyme or reason to it, at least that we can identify with any level of certainty.

We had some labs come back last week in which the results were not good. We were instructed to redo the labs to ensure the results weren’t in error. There ended up being three separate blood draws over the course of about a week.

The results of the first one had his ANC at a level of 1.8. ANC is his Absolute Neutrophil count and has to do with immunity. The repeat labs came back a couple of days later and had his ANC back up to 3.0, which is still low but not as low. The third round of labs came back yesterday and his ANC was at 2.6.

Without going into details that my brain simply can’t handle right now, these numbers should be fluxuating like this.

His doctor had ruled the first results as lab error after the second round came back with much higher numbers. We should be able to finally exhale a bit and take comfort in the fact that his numbers were much better.

Unfortunately, the latest labs have his numbers dropping once again and leaves us with more questions than answers. Which one of the results were accurate? Should we worry or should we be relieved? Which one of the results should be believed or trusted?

We cannot figure out what the problem is or even what’s causing it. It’s really hard not to become paranoid about his numbers because we can only learn about them after labs have been run. We can only do that so often and each time is painful for Gavin.

It’s a fragile balance and one that isn’t easy to achieve. It’s taxing both physically and emotionally. Over time, it takes a serious toll on me and I can’t accurately express how heartbreaking it is anymore.

Rob Gorski

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