I find myself in the weird position of repeatedly telling people, “It’ll be fine.” “It’ll work out.” or even “”things will get better soon.” I have tried to change my outlook on things over the last few years. So being positive about things is almost second nature for me now. It hasn’t always been. But even when things we pretty bad, you have to look for the good or the happy, or the positive to keep yourself sane sometimes.
But lately, I have been hearing a lot of “But it seems like he isn’t getting any better.” This being in reference to Chewy, Who has Cyclic Vomiting Syndrome.
Let’s start with… I talk about my son.. A LOT! For a multitude of reasons. The big one being, raising awareness of his condition. Most people including 98% of the doctors and nurses that I have encountered have NOT heard of it. The more I talk about it, the more people will hear about it. Hopefully I will eventually talk to the right person. That is my hope anyway.
But because I talk to SOO many people.. everytime I mention that he is going in the hospital or struggling, the reaction is the same. “It seems like he isn’t getting any better.”
First, Let me assure you.. He is “better”
We are down from 8 Hospitalizations a year with daily IV infusions to 2 hospitalizations a year. THAT is huge!
This is his level of “better”. We try and maintain his periods of stability and cope with it when we can’t. That for us, is dealing with a chronic illness.
This is his better. He may never get “better”. Because Cyclic Vomiting Syndrome is Rare and Unknown. Research at this time claims that people should out grow it. But having grouped with several other individuals and caregivers, it seems that there may be periods that it can go into remission, but not necessarily out grow.
We look forward to those times. I hope that he does get better. That we will find cure. Because this condition has taken so much from him already.
Until then, He is better. Anything is better than where he was. We are only taking steps forward. Because I can not go back to the days that he can’t remember where he slept for more than 20 hours a day, and we drove from infusion to hospital to infusion to ER to infusion to yet another hospital. I refuse to be in the position I was in before where they were going to send him home from the hospital because they didn’t KNOW how to treat him. He would not have made it.
So to each person that says he isn’t getting better.. This is his better. I pray that you never have to know and will never understand our situation.