I have been trying to read up on other blogs written about other families who have children with CHARGE Syndrome. Honestly, I don't get very far, because frankly... I can't allocate the time! However, what I am able to consume, I am completely amazed and humbled by what other Mom's deal with. It puts me in my place, and keeps me from going batshit crazy. People have said things to me like, "I can't believe how strong you are!" or "I don't know if I could do it!" and I can't help shake my head in kind of a lost confusion and think, 'yeah, you could, as you do what you have to for your kids. If you wouldn't, then you shouldn't have kids!' I also think that we're only as strong as required. Most of the time, I feel like I'm in a deep fog and just dealing with each day to day goal.
But, seeing all these families, just like us - even, uhm, *cough, cough* younger than us, dealing with the ten levels of hell that comes with having a kid with CHARGE and the multiple issues, hospitalizations and surgeries it entails. It makes me mad to see what all these kids are dealing with, yet, no one outside of us affected by CHARGE, know what CHARGE is. It's insane. Before Andi was born, I'd never heard of it. It makes me pretty curious to know what other CHARGE Mom's knew or didn't know. I mean, were you classified high risk pregnancies and seeing perinatologists? Did you know your child had CHARGE before birth? Did you have the genetic test prior to delivery? [The one that costs only a couple thousand dollars... mere pocket change for those of us with multi-million dollar babies!] What was your experience, ...if you're willing to share it?! If you would rather share your story personally, our email addy: abean528@gmail.com Please contact me, because I'm sitting here pretty pissed at what you're going through, let alone us. Plus, I keep having dreams about the book I envision writing. I'm not the strong one, Andi Bean is the strong one. She'd take down Hulk or Superman, no sweat. I'm sure your kiddos could too!
Lastly, I think us CHARGE Mom's should unite on our own and give each other ears, e-shoulders, and whatever support we need. I've always said when things settled down, we'd probably lobby for awareness of CHARGE Syndrome. I'm not there yet, but I'm pretty upset that 1 in 8-10,000 children are born -- WORLDWIDE, and yet no one knows about it. I'm getting fired-up, fueled by a crazy love of a kid who has been through a lot of ridiculous shit in only ten short months.
Is there a national awareness foundation or organization for CHARGE? I had never heard of it before the Bean arrived! Is there a ribbon color? :) You know how my pregnancies went, since I called and whined to you every day through the first one! Hugs as always!! ~Emily
ReplyDeleteYou couldn't have said it better! I feel the exact same way! Thanks for sharing your feelings and concerns. It really helps me to read other CHARGE blogs and realize that we are not alone.
ReplyDeleteP.S. I had never heard of it and we didn't find out Laynie had CHARGE syndrome until she was 2 months old.
ReplyDeleteamen sister. we didn't find out til M was about 1 1/2 months old as well...after a heart cath, open heart surgery, and severe feeding issues, she wasn't able to go home and they knew there was something more. after some idiot opthamologist came and looked at Moriah's eyes, confirmed she had bilateral colobomas (the C in charge) and told us she could possibly be blind, they clinically diagnosed her with the syndrome. that's how i found out. had no idea what they were talking about...
ReplyDeletewe''re with you on raising awareness.
on raising awareness...and getting rid of awful doctors who break the news to you in such a way - this dr. ended up getting fired thankfully!
ReplyDeleteYou're my own personal, one woman awareness raising organization! I hadn't heard of CHARGE before Andi but I'm noticing folks in our community with CHARGE now. Are guys going to the CHARGE Syndrome Conference? Sounds amazing.
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