So we went to catch Kadyn up on his shots AGAIN today. This is the third time. Oh, do you think Kadyn would behave himself. Of course not! He started seizing as soon as the nurse walked out to get his shots. So down to the ER we went. It took them 45 minutes until they got his seizure under control. He has been oxygen all day. They have too much ativan in his system so he begun to have a hard time breathing at one point. He has been sleeping all day long. They came up to my today and said something about having surgery to remove the part of his brain that is causing seizures. I think I over reacted because I jumped up out of my seat and yelled are you kidding me, are you serious. My sons brain hasn't even come back all the way and you want to remove a piece of it. I was yelling and yelling, and then i calmed down and just said, I am sorry I have had a long day and that was too much to handle, can we talk about this another day. So I don't know.
Wednesday, February 4, 2009
I hate cussing but right now I want to stick my face in a pillow and say all the naughty words!
Anyways. I was reading my fellow bloggers blog and I came up with a little rant on my own.
I am always hearing "I don't think I would be able to do what you do" or "I don't know what I'd do if that was my child"
Those says really bug me. What else could you do but be there and help your child out. I mean Seriously, if you're a real parent you would do anything to make sure your children are safe and as healthy as they can be. Being a parent isn't about raising your children, it's about being there for them, being their friend and their parent. It's about doing everything you can to make sure they are safe. So if you get thrown a disease or a condition, you take it head on and handle it. Yes, you will have your grief, and it will be awhile before you accept it, but what other choice do you have. No matter what you love your child for who they are, not what their condition is. Before Kadyn I felt sorry for children who were "different" now I embrace it. How boring would the world be if everyone was the same, if there were no challenges.
Kadyn has been a blessing in my life, and even though we are going through a rough time in our lives we are both happy. Kadyn is a happy baby no matter what.
I also get tired of my family feeling sorry for me. I don't want no ones sorrow, i have enough of my own during these hard times. I just want support. I don't want people to say "things will get better" because it seems like right now they are not, and it's not that I don't want to believe them, I just don't want to hear it. If you don't know what it's like to be in my shoes, they best thing to do is just not say anything. It's gotten so bad that I just don't want to call anyone anymore. It's frustrating.
Also when my mom says, I just wish they could do something, if they could, they would. There isn't anything they can do to stop him from having a seizure. He is going to have them and the only thing I can do is give him his Diastat and call 911 if that doesn't work. I want to tell her to not say those things, but she is my mom and I feel as though they are disrespecting me.
When Kadyn was first born I was scared to take him out. The last thing I wanted was people to look at my child wrong, but then I just thought, who cares what they think. I have the strongest little fighter in the world and I don't believe I should hide him from the world because other people have to be Ignorant. Kadyn doesn't go out much in the winter due to everything that goes around. Summer time i flaunt him. I mean how can you not love that precious face.
Well, I guess I have a ton of frustration in me right now. I am going to go to bed now. I have a long night and a long couple days in this jail :-)
Goodnight
Posted by Sara at 2/04/2009 09:43:00 PM
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4 comments:
It's very understandable that you would feel so frustrated. Kadyn's seizures are such an ongoing issue it must feel like there's no end to it. I don't know what your finances are like, but we take Cayman to a Naturopath in Adrain, MI that I believe is a healthy alternative to medicine that could help stop seizures. It's expensive and insurance doesn't cover it. I just cringe at the thought of them wanting to remove part of his brain! I agree with your reaction....ARE YOU KIDDING ME?
Poor Kadyn. I am so sorry I hope he is well soon.
I hear too hear "I don't think I would be able to do what you do" or "I don't know what I'd do if that was my child" all the time. I don't know if people say it because they mean it, or if its all they know to say or what.
But honestly, this is how are children are. We love them the same as anyone loves their child. Just because they are diffrent and more "difficult" doesn't mean anything. You just pull yourself up by your boot straps and go. Your life and your childs life is what you make it, so why not do your best?
That's always bugged me, when people say that. Like what are we supposed to have done given our kids away because they are diffrent. We do extra things, but first and formost we are parents just like everyone else!
You wrote such a simple yet profound statement: "Kadyn is a happy baby no matter what". That is so apparent in all the pictures and throughout everything we read about him - how you handle him and all the other aspects of your life continually amazes me. I personally think you are the very best mother by which that precious little boy could have chosen to be born. I hope you find comfort in the knowledge of that.
I understand your frustration. I hear the same comments from member of my family and even some friends. I have to deal with this. I dont want anyones pity for Madelyn. She is such a joy to have in our lives.
They have never mention surgery to remove a piece of Maddy's brain,but have realized her seizures only happen when something is wrong with her shunt or something is going wrong with it. It so hard to see our kids going through this. I will be praying for Kadyn,you and Harvey. Keep me posted.
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