It's been awhile since I've written. Sometimes, when shit happens - I need a place to park it. I need to purge & process the emotions, the situation, the grief. Our CHARGE Syndrome family has collectively come together in ways I hadn't seen before to rally around a family in distress. Their son was recently rushed to the ER, and been in the hospital for a few days. They did exploratory surgery and relieved pressure in his abdomen. The prognosis wasn't good. He was fighting for his life. The CHARGE family turned into The CHARGE Mafia before my eyes. We all took pictures of our own CHARGErs holding 'Get Well' signs or iPad's lit up with encouraging sentiments. The whole community turned into a protective circle of encouragement, energy, and prayers. It was unprecedented. Did you know that there's a 15-20% chance that a kid with CHARGE Syndrome will not survive to the age of 5. That's around 1 in 6 kids. 1 in 6... how incredibly jacked up is that?! I guess I live with blinders on most of my days, because I can't even grasp that. I always heard and believed that if they made it through the first year - they'd be okay. Revise that number Momma, the age is five, not one. Andi's not even four years old yet.
As for this family in distress, the Dr's went back in this morning and concluded that the damage to his organs is just too great. He will not survive. So here's this incredible family having to say goodbye to their 15 month old son.
The CHARGE Mafia has started a collection or fundraiser to help this family. While money doesn't help with grief, it does alleviate financial worry and strain at a time that no parent should have to endure. We're asking people contribute what they can, even $1. will help. If you can donate, please go here: http://www.youcaring.com/medical-fundraiser/connor/124026
And because I have no where else to park my own grief, worry, and overwhelming emotions - I have to say it here. I absolutely HATE CHARGE Syndrome. It breaks my heart to have these kids fight for their lives, harder than most of us fight for anything, and 1 in 6 don't make it. 1 in 6 lose the battle. Yet, all of us, me included, waste our health. We yell at our kids to be quiet. We lose patience when something or someone isn't fast enough, or the way we want them. If only we used that energy toward something positive, like supporting those fighting hard to live, fighting for health, fighting to survive. Good God, stop abusing your own health. Stop when you start to lose it, and reflect on others and what they might be going through before you utter anything negative. And to my beloved brother whom my baby girl loves more than anything... stop smoking. Stop using it as a crutch. Stand on your own two feet, tall and proud... I love you, she loves you, and we need you here. Be healthy and free of the negative shit that holds you back, holds you down. Sorry to single you out, but damn-it... you're too important to us and I love you. To the rest of you, you too have been challenged, find ways to improve all our lives. Educate others about CHARGE Syndrome. Remind others to cherish their health. And as you go out your door, go through life with gentle hands, gentle eyes, and an open heart.