Don’t tell anyone, but I tattled

As I mentioned in my last post, Chewy (my son and CVS’r) has not been doing well. The inpatient has been scheduled. But, we have to get there. That is a struggle.

Chewy has been taking his maximum amount of meds a day. Still trying to maintain school and college classes. He’s behind in school which is stressful and there was a deadline that added more pressure and stress that incurred more issues for our already struggling CVS’r.

The college class is an energy drain. When you have Cyclic Vomiting Syndrome, you most likely already have energy issues. But, we were encouraged to work on rebuilding the muscle that Chewy lost a while back when he was very, very ill and his body used the muscle to survive.

So we did that.

But, I will admit that we chose the wrong time.

See, we should have done the muscle rebuilding closer to the time that he has been in for the DHE treatment.

Having done the class on the tail-end of the time that the medication is effective, he is struggling. Big Time. It has been more challenging than normal when we are ending the DHE. His stomach pain is much higher. His energy is way lower. Nausea has been more than 4x what it normally is. Or what he normally shares with me. Maybe because I told him he needs to take the meds. There isn’t a reason to stock pile them. If he needs them.. take them. So it could be that he is taking advantage of the meds.

That brings me to the tattling part.

See, when he started the class the teacher asked each student to provide information about themselves including medical issues that could affect them during class.

Chewy opted to NOT disclose his condition.

I allowed it.

Here’s why: The teacher is a chronic illness sufferer also. I hoped that Chewy would see that although you are ill or chronic, you can still A) have a job B) function in society with out too many negative opinions C) be a positive role model about your condition. I hoped that having a positive chronically ill role model, he would be able to corroborate about it. But, I also knew that he wanted to be “normal”.

As the class has progressed, and the severity of Chewy’s symptoms have increased in frequency and severity, it became apparent that the teacher needed to be told what was going on.

Chewy had missed three classes. With the inpatient adding another 2 classes to the absence list, he needed to be told something.

Chewy had sent the email telling him about the three and warning him about the two upcoming. But with little to no  explanation.

Being the interfering/helicopter mom that I really try not to be… :).. I felt I needed to contact the teacher and let him know what was up. I had wanted to in the beginning of the class, I even had the entire letter typed up still in my document history.. But Never sent it. I had to respect Chewy’s wishes to want to be “normal.”

But things changed.

We are a few weeks out of the end of the college semester. One of which he needs to be hospitalized for.

So I sent the letter. I TATTLED.

With the “my kid is still a minor” so I can interfere mentality..I sent an email with the subject line Interfering /helicopter mom:).

I explained why I had let him with hold the information, and what was happening. We did take the fitness class as recommended by his doctor. But really should have let the teacher know that he would struggle. But, as this was really Chewy’s opportunity to reemerge from isolation. I did indeed feel it was best for him to make the call. I did not agree with him with holding the information now that he was struggling. But he was doing what he was comfortable with. And so was I.

Being that he is Chronically ill. He completely understood and now knew why he wasn’t connecting with Chewy. He felt like he had been holding something back. He was happy that I had given him the information.

I wasn’t. I felt guilty. I was worried that the teacher would do what he said he wouldn’t and say something to Chewy.

But, it has been a bit. So far so good.

But, I still feel guilty. I feel Like I did what was best. It will truly help the teacher understand. Chewy isn’t hiding behind his invisible illness. He’s fighting it. Fighting to be “normal”.

I’ve told the family that, that is the new curse word in the my house. “Normal.” I have never been, nor never claimed to be “Normal.” I don’t understand why people strive to be. Embrace who and what you are. It is YOUR normal.

 

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

2 Responses to Don’t tell anyone, but I tattled

  1. VironBob says:

    Normal and Average. Two words that frustrate that irritate those of us that have to deal with a label that tries to define us. Why be normal? Why be average? You are right: be you and be your best! Good luck to Chewy and family with the next round!

  2. Reblogged this on kneedeepinlove and commented:
    We are never alone in our struggles. It seems though all CVS’rs and their families are different, we are also very much the same. The same in the constant fight for awareness and in the advocacy we feel we owe our loved ones and others with CVS.
    I think this mom did great. Her son is still a minor. Furthermore, she will always be his mom.
    I think about these things as my now 5th grader gets older. She doesn’t mind my intervening on her part right now, but I know one day she will want to make that choice on her own. God knows, I hope she outgrows CVS as some kids do, but I hope He also grants me the wisdoms to teach her when and where to stand up for herself and when it’s ok to let others help do it for her.
    To this CVC momma: I think you are doing great. Thank you for sharing!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s