Monday, April 16, 2012

"Bee"-ography Monday

Ok, ok... it's been a couple of weeks since I have found the time to post. But I've made a commitment today to post every single day, even if it's only a photo or a quote! So, stay tuned as there is so much to catch up on!

But first, since it is Monday... must start with another edition of our "bee"-ography series, this one from hydran-mommy to Carsyn, Paula, who shared her story via her own blog that you can link to on the right of our page by clicking on Carsyn's photo:

From the Start..

My name is Paula Kelwaski. I am a mother of a special needs child, one with a disability that is not very common and one that I haven’t found around New York State so far. He is four years old (five in May, God help me) and is the light of my life. I’m new to blogging so in order to really tell you our story I would have to start from the beginning. This won’t be an everyday thing, more than likely a once a week thing since my life consists of work, online college, my son (Carsyn) and my boyfriend (Todd) who might be the single most difficult yet best thing that’s happened since Carsyn came into my life.

 So here it goes..

            At 14 I moved back to my hometown in Ashville, New York and met a guy while at a roller rink with my friends. This guy was the first and only guy to show any interest in me at all since I moved home. Looking back this is probably one of the reasons why I felt like I needed to continue seeing him. You see, at fourteen you think nothing will change, that if you don’t do something it will be the end of the world for you. I don’t know why I felt so into him, he was a jerk to say the least, but we’ll get to that part later. My mom HATED me seeing him, which is the second reason why I kept seeing him. I thought I was in love and at this time I guess I was rebelling a little. After a while this guy got pushy, he said his mom kicked him out (he was 19) and he needed to stay somewhere. I wanted to save myself for marriage, I was convinced that I would be that girl, I would fall helplessly in love and get married and have babies and live happily ever after. I’m a romantic, sue me. I gave in to this guy he moved in and I got pregnant. I didn’t know I was pregnant. I had people at school whispering about me. I even had the school nurses take me into a room in their office and ask me to pull up my shirt! People thought I was lying and I was a whore. I was doing neither. Now you’re all probably wondering how I didn’t know, how I didn’t see the signs. For all you guys out there that are reading this and don’t like hearing about a girls monthly time, suck it up, this is the only time it will be in here, don’t be a baby. To answer your question though, there were none. I got my period every month; I didn’t get sick, I didn’t have a single sign to tell me except the fact that I was gaining weight. I thought I was going to be a chubby girl. Not everyone in my family has a small frame. So I went home to tell my mother about people harassing me. She had me take a pregnancy test to shove in the school’s face, but that backfired. I was indeed pregnant, and when I went to the doctors I found out just how pregnant I was... Seven months. For seven months I hadn’t known I was pregnant! The doctor informed me that this is rare, but does indeed happen. For all the non-believers have you ever seen the show I didn’t know I was pregnant? Those stories are very much real.

We had my first sonogram the same day and now that I think about it, the technician was acting a little funny. She wouldn’t let me see the screen. She said he was just too big to see all of him. She sent us back to our doctor and without any feelings at all for us said that my baby had no brain. His exact words were “it’s not compatible with life” Just like that my world crumbled. I remember sitting down with my mother and crying. I remember telling her how unfair this was it was my first baby and I was going to have to start planning the funeral.

            We had a second opinion done and they confirmed that my child had no brain. Although they didn’t tell us outright that it was a boy they said the heart rate of the fetus implied that it was a boy. I was so happy. In that time I had a glimmer of hope. Maybe I could do something. My hope was shattered when they told me he wouldn’t live past birth. We had the doctor do an amniocentesis (they stuck a needle in my stomach to see how mature his lungs were) because if the baby wasn’t going to live my mother and I didn’t want to go through going full term just to lose him. My nerves were shot. We scheduled my C-section for a couple days after that appointment. I went home that night having the worst cramps I have ever had in my life. I was crampy all day that day but I thought it was my nerves. The doctor said I was having mild contractions but that was a result of the amniocentesis. I couldn’t get comfortable that night and realized that I was going into labor.

Around four that morning (mother’s day) on May 13th 2007 I had my little boy (With a little resistance from the nurse who told me I was having him natural, which in the end had my doctor flipping out on everyone) and was informed that my baby boy just might be better off than everyone thought. I cried. It’s all I could do, I didn’t care if I was getting my hopes up, I just wanted SOMETHING, some glimmer of hope that I could hold on to, anything. The both of us got shipped out to Women and Children’s Hospital of Buffalo where I met nurses who gave me even more hope and doctors who shot me down. They said he would be a vegetable, that he would never recognize me, never do anything and that he would die before his first birthday.

            Carsyn was released from the NICU and was able to come home with me a month later. A month of everyone playing guinea pig on him and he was finally able to come home, Only to return a couple weeks later. He had to have a surgery on his stomach because he wasn’t keeping food down. He came home a couple days later. Just to return AGAIN that August. When he came home the second time Carsyn wouldn’t stop crying. He wouldn’t sleep, he threw up all the time and I was completely exhausted. This time when he went back they informed me that he would need a shunt because of the fluid building up in his head. You see my son has a rare condition called Hydranencephaly which means that more than half of his brain did not develop. This isn’t something that can be stopped. It just happens. So in result to that his head filled with fluid.

He has been diagnosed with a seizure disorder; severe reflux (he has a feeding tube now) and cerebral palsy. This kid keeps getting hit with something new, but he keeps beating the odds. 

We celebrated his first birthday in 2008. (Take that hope crushing doctors.) One blow that almost killed me happened on November 13th 2009. I got a call at work telling me I needed to come home.

Carsyn had stopped breathing...

The ride to the Emergency room seemed to take forever and all I could think about was how could there be a God if he let me have all this time with him just to take him away now? In the end Carsyn recovered very well and came home.

Carsyn has had several surgeries since then, several different doctors, and met so many people who love and care for him that it seems crazy to me that we’ve come all this way. My little boy will be five in May. He kicks, he may not be able to talk or walk but he makes due. He coo’s and babbles and screams when he’s in a good mood. He lets you now when he’s upset and if he goes too long without seeing someone he really likes he gets upset because he MISSES THEM. Now tell me this kid doesn’t recognize people.  

I know I am going to outlive Carsyn. It’s something I have had to come to terms with. I still have that hope; he gives me more hope every day, every time he smiles at me. His moods can make or break your day. When he smiles your whole heart feels as though it may burst from happiness, but when he’s sad.. When he cries it breaks your heart, and it’s hard not to cry with him. I don’t know how many times I came home from work to him crying and have had to sit down to cry with him. He is that much of an influence on everyone’s lives.

            As for his father, he is no longer in the picture. I got rid of him after two years of emotional and physical hurt and exhaustion form the relationship. He never wanted anything to do with Carsyn, which is fine by me. I met Todd in October 2009, and can’t be any more impressed with him. He treats Carsyn like his own, treats me with respect and love. He is the one thing we were missing. Although my mom was always there I needed something else, SOMEONE else to be exact. I can now say that I feel 100% whole. I have my family.

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. 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.

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.

1 comment:

  1. Paula, You put it perfectly when you said "That child's happiness is your happiness." Carsyn has a brilliant light, thank you for showing me and each of the readers fortunate enough to find your post His story and yours have certainly touched me. Stacie
    PS He's adorable too:-) love the pictures.


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