There are moments that I am just so angry with the cards my family has been dealt. Why do we deserve this? We’re good people, not perfect but good. My kids never did anything to anyone. Why are we so unlucky? Why do my wife and kids have to suffer? I look back and wonder what we did so wrong that we deserve this. My wife survived a very abusive ex husband and 10 years in court protecting Gavin from that same abuse and worse (you can use you’re imagination there and you wouldn’t be far off) . We eventually won but at what cost? Lizze’s health is a complete disaster and we all know about Gavin’s quality of life. We went backrupt and still owe over $25,000 in legal bills and insurance refused to pay for a “medically necessary” surgery that Lizze needed (and is still recoverying from) regardless. If there where ever two people who earned the right to a better life it would be them.
I was a paramedic. I ACTUALLY SAVED lives at the risk of my own. I wasn’t a hero like the soldiers defending our country but there are people here today because I saved their lives. I destroyed my back (and have spent almost everyday since October 2001 in excruciating pain) carrying a pregnant woman (who was bleeding out) down a flight of stairs.
Shouldn’t there be “good karma” floating around out there with my wife and kids name on it by now. We’re good people… Doesn’t any of this count for anything? Why is it that ALL three of my kids will have to carry the burden that is Autism for the rest of their lives and so many others don’t?
There are times like tonight when Emmett is just screaming and Lizze is literally being assaulted that I just get so angry and frustrated at how our lives have turned out. Don’t we deserve the same chances at life as the next family? Don’t my kids deserve the same chances at life as yours? Why us? Why my kids? Why my wife?
A really good friend of my parents told me something a few years ago (she helped guide through the legal and social system while we were still fighting to protect Gavin). She told me that if she hadn’t witnessed these things first hand she would never have believed this stuff could actually happen to one family.
Anything bad that CAN happen to us DOES happen to us. No matter how remote the chance’s may be. Having 3 Autistic boys is just one example of that……
Rob,
I've had moments like this myself in the past couple years as they try to figure out what neuro muscular thingy-ma-bob (medical term) I have.
I recall a line from a Clint Eastwood / Gene Hackman movie called Unforgiven, near the end of the movie hackman says to eastwood. "I don't deserve this; I was building a house". Eastwood says "Deserves got nothin to do with it".
I refer to that line in my head often; trying to put logic around such medical/life/"karma" events just doesn't work and will just drive you more insane
I (like you) am very lucky in that I can work from home, so the increasing movement challenges are less impactful. You have an adoring throng of ROM followers who give help in anyway we can. It is hard to see the on days like those; but your worse day is someone else's best day and there are literally billions of people on this planet that would trade for your life in a heartbeat.
I try to focus on those thoughts. You have many people pulling for you and your family. We hope and pray things turn around for you all.
I hope this doesn't come off as a soapbox moment; I have the REALLY??!!? .. now .. REALLY???!!! days too and wanted to let you know that we know and we care.
not in that don't ask don't tell way though 😉
Jon