The Vortex

Please excuse my absence, and lack of posts. Apparently, my brain has been scrambled eggs since being hit by that tow truck. I literally couldn’t think straight. But as I am forced to handle the daily monotony, My thoughts and focus are slowly returning.

We have been trying to work with the local College to get Chewy enrolled there for a couple classes to coincide with his Senior year of High school. This has been so frustrating. This is what I am referring to as the Vortex. You are literally stuck in the middle of a mass of swirling information when nothing gets done. You fly around in circles but get nothing done. This started back in MARCH when we started fighting the school to try to get him back in. Which was not possible.

So the anger and frustration begins and leaves be wondering where are the programs that help the “in betweeners”.  It started when I saw a post about a very deserving child getting the Diamond Princess treatment at Disneyland. These programs are fantastic, and my intent is not to demean them at all.

But for once, I would like one, just one program that makes things easy, or just helpful for the kids, adolescents, teens that don’t fit into the pre-designated holes. I always picture the old toy you may have had as a kid that you would match up the shapes to push into the center then pull it apart to release the pieces.To really explain this, I will have to back up just a bit. Having been dealing with Chewy’s Cyclic Vomiting Syndrome now for a few years, we have been through the ringer on quite a few things. Cyclic Vomiting ranks in the top 10 Rare Diseases and because of this, it is VERY hard to get a diagnosis. It also, doesn’t have a cure. Add those two together and you have a very difficult time. Toss in, being a teen, school, growing, hormones, and you have a very complex mess.

Once you get a diagnosis, you try to lessen symptoms with typical meds. This is a process in itself, as you have to be on most medication for a certain time period in order ascertain the meds ability to work on the symptoms. Besides the actual diagnosis. This was the biggest struggle for us. Some of these periods we 60-90 days. 60-90 days for the average person going through the everyday tedium can go very quickly. When you spend 60-90 days in Infusion centers for up to 8 hours a day, nights in the ER or days on end admitted to the hospital, even a week seems like a life time Especially when you can’t do anything to help or comfort your child.

That brings us to the beginning of the vortex.

You start with the running around from appointment to appointment. The juggling of medication and schedules. Then toss on the occasional argument with the school that can take up a week or more of you time. Toss on what the Doctor would now like you to add to the schedule. Stuff begins to spiral out of control pretty quickly. But a controlled spiral. Starting the vortex.

Now, because you are such a helicopter parent, being that you have thus far felt completely inadequate at being able to help your kid, you tend to research everything. Isn’t that how you came across the Cyclic Vomiting information to begin with?

The doctor wanted Chewy to engage in Chronic Illness coping therapy. Here is where the vortex spirals out of control. And bitterness takes over the speed of the vortex.

After having fought the school to KEEP Chewy even attending, now we have to try to add even more classes. But we agreed that he needed something to help. Every thing in his life had been taken from him. His health, his school, his friends, social interaction, FUN, excitement. SO lets’ bore the kid by having him talk to a therapist that can help him cope with it. My suggestion is to have a program that would actually help them get back into school, without a fight so they can have all of the above. But that isn’t available. At least not to families of moderate means.

So coping it is. At least until you CAN’T find a therapist that treats teens. This is where I started finding that our struggles would most likely continue for the next few years.

You see, Chewy is in the hole. The hole is the years between pediatric and Adult. Not only for healthcare, but apparently this holds true of even getting help at the college. I expect that the care we are going to be getting is going to change. Especially since we see a Pediatric Specialist now. But this terrifies me. I have been fighting this fight now for more than 4 years.

I can tell you from experience that this needs to change. But how? I at one time was SO motivated to make things change for schooling- You know, make them name a law or motion or something after my kid, that I sent letters- emails, any contact I could think of to any one I thought would listen. Here is the kicker. No one cared. Even groups supporting Student rights.

But motivation dies a slow painful death when you realize that there really is no one that cares to help.

Is it a sign of the times? Over the last few years, I have been observing the steady decline of customer service. I feel that this is the result. IF there are people out there that are supposed to help. Whose JOB it is to help. They don’t. So, we will spend a few years in the vortex in between being a kid and an adult.. and cope with that being Happy that we aren’t stuck with out direction Like we were before looking for a Specialist to help us. See Our Specialist Saga here. Because every day brings a new adventure.

(I had actually started penning this before my rant of yesterday about the college dilemma)

This entry was posted in chronic illness, Cyclic Vomiting Syndrome, education and tagged , , . Bookmark the permalink.

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