10 Things Your CVS Child Wish You Knew......(updated)

There are things that CVS kids wish that our caregivers knew. I am blessed to be both a former CVS kid and the parent of CVS kid. My husband on the other hand had no prior experiance with this.. and I'm now learning that there seems to be some common mistakes NON-CVS sufferes make while caring for their children.  CVS is a whole different world and type of vomit....and many well intention parents make rookie mistakes....Here's some things they wish they could tell you:

1. I don't do this on purpose. I get excited about birthdays, holidays, field trip and overnights. They sound like so much fun. But for some reason my body processes this differently. The signal misfires and sets it off. Or for some of us hormones set it off. whatever it is I do not chose this.

2. I don't mean to miss the toilet. The need to vomit and the pain is so intense I can barely move, open my eyes or even listen to your voice.... so forgive me if puking into a towel is the closest thing I can do. Lifting my head it too much for me at times. Thank you for keeping a bucket near my bed and cleaning up my messes.

3. I wish I could swallow my own saliva...between the taste of it from mixing with bile and or bloody mucus I cannot do it. I'm terrified it will trigger more vomit since... well everything does, any sound, movement, touch, breeze is too much for my nervous system. The one thing that would help the most hydration is at the same time the biggest aggravation to this cycle I am stuck in.

4. I may need IV fluid to get me through it. It's not because I don't want to swallow, Its that anything that goes down will come back up. Oral med are the biggest joke if you are actually in a true Cyclic Vomiting Cycle. Its not gonna happen. I may even ask for suppository, or yes even a shot to make this pain and cycle stop. Listen to me. and Help me please.

5. I need a bat cave. QUIET, DARK and NO MOVEMENT! I love a weighted blanket to comfort me. Possibly a white noise machine or fan pointed in another direction. Please don't wash me up right a way, turn on lights, talk to me to see how I'm feeling or flush the toilet near me. Any of those thing will cause me to vomit so chose which you need to do wisely. Once I start it hard to stop...so please just stay near by so I know you are there. I get scared and feel like I'm dying and I might faint. Actually I might wish I'd faint as that would mean less pain for a short time.

6. I'm hot I'm cold. As the urge to puke gets more intense I get hot, blotchy and sweaty. I may throw off covers suddenly. After I throw up I tend to get the chills and shake....and then repeat over and over again. Don't put a lot of clothes on me to keep me warm....just a blanket will do. After I throw up is the best I'm going to feel so only ask me questions at that time. otherwise I'm too busy trying not to throw up to have any energy to answer you.

7. I love you! I hate this just as much as you do. Thank you for helping me through this. Thank you for seeking treatment when needed and not seeing it as a failure or that it is because either of did not try hard enough. It's just the nature of CVS. We will figure this out together. I know you are there to help me. Listen to me when I talk and I promise to do my best to do as you ask.

8. You are my rock. No matter how bad I look, quietly cheer me on. When you freak out, I freak out. So stay calm and then you can freak out later. Take advantage of online support groups so that you don't feel so alone. We may not know too many people near us that have this battle, seek them out. It will help all of us feel more normal and validated.


9. If school is too much for me, that's ok. It is not a failure. It's just an alternative lifestyle. There's never been a better time for homeschooling since Internet, charter schools and co-ops are on the rise in the United States. With some many parents opting for this, we are hardly a lone and it need not be just a curse of CVS, it could be a blessing of it. Check out this video on "hackschooling" its amazing, just look at what this home school kid does. This could be me!Together we can do this!~

10. And remember cycles do not happen all the time (typically) and no matter how many hospital admissions we have which often complicate family events and holidays, we still have a good life.Our life looks different than others.... but I would not change it. I also don't know it any other way. To me this is normal. :)