There are a lot of Doctors out there who claim to know a lot about Hydranencephaly. The papers they write about it go to show that they have no idea what they are talking about. I can’t seem to find the site again, but I stumbled upon one last night that said that all children with Hydranencephaly are blind and deaf. Holy mother of god, where did you get your information? Even though there may not be any kids like Carsyn that I can find in New York State I have found some spread across the country. So guess what? More than half of the kids are neither blind nor deaf. I’m sure some of them have vision problems, like Carsyn does but Carsyn is not completely blind. His hearing is 100%. So not ALL the children with this disease are going to be blind or deaf. You can’t assume things it only makes you look like a moron.

                Then there are some doctors who have told me that Carsyn will never recognize me. That he would just sit there not doing anything. Guess what? Carsyn knows who I am. He watches me walk up to him when I get home from work with a little grin on his face just waiting for me to ask him if he missed me as much as I missed him all day. Because he knows that’s how it goes when I get home.

Carsyn also knows that sometime between his fourth and fifth feeding of the day (feeding tube, remember?) that Todd is going to come home and the first thing he is going to do is come around to the back of the couch and say hi to Carsyn, or as we like to call him, Bubs. Bubs is a nickname my mom gave him when he was a baby and it’s stuck ever since. This kid hardly knows his name is Carsyn, thanks mom. But my point is that Carsyn KNOWS this stuff. Just like he knows his morning routine, his bed time routine and his feeding schedule.

                Pneumonia. That one word scares the hell out of me. If Carsyn ever got this, it would be the end. This one word causes my blood to freeze and my stomach to tighten in a knot. Most kids that get Pneumonia don’t make it back from it. Any cold that Carsyn gets has the potential to turn into Pneumonia. So when I tell people to stay away from Carsyn if they are sick I mean it. I would rather have teeth pulled than have Carsyn get sick. Just the slightest cold and my world could fall apart. The thing that scares me the most is that Carsyn get that sick and doesn’t bounce back from it. He’s sick right now and you don’t know how nervous I am. Paranoid that someone will bring an even worse bug to him. Paranoid that this cold will take a turn for the worst. I’ve become used to hospital trips, I can sleep in the uncomfortable fake leather recliners at any hospital you put us in. I’ve done it that many times. I will never get used to the beeping of the machines though. That is one thing that gets me in the hospital. One wrong beep and I’m up out of bed checking on my little boy.

                Every parent with a special needs child gets used to hospital trips. We don’t do play dates, we do doctor’s appointments. We don’t relax. We can’t. Ever seen me and I’m really uptight? Then there’s something going on at home. We have to take it day by day. We can’t plan what our child will look like when they get married. We plan what they will look like tomorrow. Sometimes I stay up at night wondering if Carsyn will be happy or sad. If I’m not working I’m with Carsyn all day. I think parents with a special needs child pay a little more attention to the little things. Where one parent is excited about their child’s first steps, we are excited for our child to hold their head up without help, or track a light in vision therapy. Every smile is noticed. Ever frown is noticed more. That child’s happiness is your happiness. For all the parents out there with a special needs child, you know how it is.

                This fact sheet is more realistic than the one I mentioned at the beginning if anyone wants more information on this. http://www.hydranencephaly.com/hydranfactbrochure11.pdf 

I know a lot of people won’t read this. But I also know a key few people who will. Just because that’s how they are. They are so close to Carsyn that they want to read more about it. Half of those few people have already done their reading on this :P

So until next time <3

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." 
-- Albert Einstein