Life aint always beautiful, but its a beautiful ride...

When I was a child, I remember the feeling of there being marbles in my head.  I remember feeling like someone was in my head hammering.  I remember my stomach hurting constantly, and having the feeling of something in my throat all the time.  I coughed non-stop.  I remember going into the bathroom and standing on the toilet with the hot shower running so the steam could help my cough. I never wanted to go to school because my teachers got so annoyed with me “disrupting” their class with my cough.  As I got a little older, umpires at softball games would pull me off the field, Gym teachers would make me sit out of games they played.  I was tested for whooping cough three or four times.  At 12, I was told I was allergic to milk.  The cough got a little better after that.  At 18, I had my tonsils out.  At 22, I was diagnosed with dystonia.  No one will ever know which of these three things was the major reason but now, at 26 I hardly ever cough.

I have been doing pretty well lately.  I find myself to have a lot of anxiety, which sometimes makes the dystonia worse.  I saw the neurologist on Monday and he did a small adjustment.  I have been having severe pain in my feet but he doesn’t think it’s related.  He gave me flexeril to try to help with some of the pain but I haven’t had a chance to pick it up yet.  He noticed that when I am just sitting there my left hand and left foot are often curled in.  If I think about it, I can straighten them but when I am just relaxing or talking, they are curled.  Today, my neck got stuck.  I don’t know if this has anything to do with the adjustment or not but it’s the first time in a while that it’s happened.

I have never really been too religious but I think that God had a plan for me.  When I was growing up and I was sick a lot, at the doctors a lot and then had 6 shoulder surgeries and 2 brain surgeries, I think he was getting me ready to have a child who also needed to be at the doctors a lot.  I have learned so much from going to so many doctors and it has taught me to be a compassionate and loving mother.  Although Cody doesn’t have the same disability as I do, I can relate to him and know how he is feeling.  I feel like I know questions to ask and what to do in this kind of situation because of my own experiences.  I also feel that Hailey will grow up being more compassionate and also know more because of Cody and I. 

It is very hard for Hailey to watch Cody go through so much but she is such a wonderful sister at only 3 years old and always asks him if he’s ok and if he coughs or anything she tells me he needs to go to the doctor.  She is such an amazing little girl and Cody is so lucky to have her as his big sister. 

It is very hard to raise two children.  It is even harder when you have one with a disability.  I have learned though, that no matter what it takes and no matter how hard it is, you do what you need to for your children.  We go to Boston almost every week, sometimes more than once a week.  I have to leave Hailey a lot and it’s very hard but look how well Cody is doing.  I think that Cody is doing so well because first of all he was diagnosed early and I fight for him.  I call and email the doctors daily to update them on Cody and when I feel like something is wrong, I do everything in my power to get him better. 

The same thing with Hailey.  I didn’t think it was normal for her to snore the way she does so I talked to her pediatrician.  They didn’t think much about it.  I also strongly believed that her behavior is not just because she is three.  I also brought that up.  With these two things in mind, he took a look at her tonsils and said they were HUGE!  I also talked to Cody’s ENT about her and he said it is not normal at all and she needs to be seen.  I am bringing her there next week to be checked out.  Her teeth also look awful so the dentist referred her to Boston Children’s Dentistry and they are working on fixing them. 

When it comes to your own kids, you do what you can to make things perfect. 

I learned this from my mother fighting for me.  Although I hated being at the doctor all the time, she brought me to every kind of doctor possible until they figured out what was wrong with me.  And because of that, I am doing great now. 

Yesterday I was talking to a friend of mine who I met through this blog.  She also has dystonia and is one of the nicest people I have ever come to know.  I was feeling pretty down and in a lot of pain and she talked me through it and made me feel like superwoman.  She seriously made my day so much better by telling me how much I’ve changed her life and what a wonderful mother I am.  She made me realize most of what I wrote above and now I strongly believe that I am doing the best I can at raising my children and sometimes I need to take care of myself too (which I need to start doing!)

I wish that I could find a job to do part time but it’s really hard to find any time at all.  It’s also hard to find a daycare that would take Cody and it’s hard to find a job that would give me that amount of time off along with paying me enough to cover daycare and have an income.  It’s nearly impossible.  I have been trying to sell Pampered Chef so if anyone is interested please let me know!  Even if you don’t live near me, you can do an online show!  We have some great products! 
If anyone is interested in following Cody’s story, you can find him on Facebook at Prayers for Cody.  Thank you to everyone who reads this and follows my family, I’ll try to write again soon!