New Year, Same Issues

 

As we head into the New Year, I find that my blog has been pretty silent.

Every time I sit to write something I wonder if anyone really cares. Then tell myself that there is always someone that is out there looking for an answer. I was that person for a long time. I still am. Not only am I inquisitive, I usually ask more questions than I can get answers to. I tend to find the holes or ask a question that some one hasn’t asked before.

A couple years ago we found a hole that still hasn’t been filled.

I want to know why? I want to know WHO can fix this gaping hole in the system. And for once I am not talking about the education system.

If you follow my blog, you know that my son has been deemed “chronically ill.”

It was suggested, that being chronically ill, he seek a support group for “coping” with the chronic illness. I can understand why. These kids miss out on SOOOO much. Their entire lives are disrupted with doctor visits, hospital visits, tests: whatever is necessary to aid in their living. This means missing school, dances, sports or just hanging out with friends.

For Chewy (my son), he ended up having to be taken out of school. This removed him from EVERYTHING that a “normal” teen would experience. Think about your life experiences and imagine taking away ever and everyone associated with your high school experience or time.

Poof!

Huge difference, huh?

I imagine that being a guy and being sick is different than even being a girl. Girl’s maybe more supportive. I have seen more girls with friends that stick around or are more supportive of what their friend’s are going through. Our experience isn’t like that. It may be because our illness had to do with vomiting and the parents and even the kids did not feel comfortable around it.

This leaves us with Coping and our gaping hole.

There is support for Families of Chronically ill. Groups for Children of the Chronically ill. Caregivers and parent support groups. But NOTHING.. not a single solitary thing for the poor kids going through this.

Why not? Where are the support groups for the ones that are ACTUALLY dealing these conditions?

These kids suffer and deal with SOOOOOOOO much. Why has someone not thought to have a group for them? Where they can be with other kids that can understand what they are going through? Not being judged for being sick, or being attached to machines.

There seems to be a void. A never-ending chasm of need that should be filled. Yet very little being done to fill it.

The alternative.. Cognitive Behavioral Therapy. Where you are supposed to learn the pros and cons of what you do and how to handle those or change the outcome.. next time.

No thanks.. We did that, unconsciously as we figured out as we triggers for our condition and taking medications at appropriate times. It became second natural to apply it other places.

What about just plain ole’ regular therapy? Well, we tried that too.. Welcome to the land of Quacks. Not the patients.. the “doctors.” We had one that told us that she couldn’t help us with this life until she had healed his past lives… This is a buyer beware.. And since you can’t be in the session with your child.. it really is buyer beware. Some helped, some sent us running the other way.. Quickly.

So, we once again visit the idea of a support group. Why isn’t there one? I have found articles about John Hopkins starting on-line options for teens. But, a few years out of the gate.. no trace of it. It was for their inpatient group, so I hope that it does exist. If it is like the inpatient that we are used to to, you aren’t allowed to talk about your conditions.

I’ve seen on-line support groups, a few locked down, but for the most part they are open. Kids and teens discussing, openly, information about themselves that, I as a parent, am terrified to know is being shared on-line.

Our kids are looking for a safe place to share and feel support that they aren’t and can’t get.

It’s time that someone stepped up and started doing something.

This entry was posted in chronic illness, Coping, CVS, Cyclic Vomiting Syndrome, health, hospital, invisible illness, MIgraines, Support Groups, Uncategorized, Vomiting and tagged , , , , , , , , , . Bookmark the permalink.

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