Wednesday, January 25, 2012

Reality


These past few days have been so hard on me. I have cried more than I have cried about any of this in the past 3 years. Reality has set in that I will never be 'normal' and I will deal with this for the rest of my life. There is NO CURE! There is a long list of things I will never be able to do....like ride a rollar coaster, go sky diving (not that I would, but still). It hurts!!  Now being a senior I realize how much I have missed out on. I realized that if I would have felt better maybe I would have wanted to go to the friday night football games, winter formal, prom and be more involved, but I wanted to do what I had to do, nothing more and nothing less. Seeing my sister get to do everything I did not, really makes me sad. I am so HAPPY she gets to do it, but I wish I had felt like doing it too.  I realize I dont get a second chance and this should be the time I am having a blast, but instead I am in and out of doctors offices and hospitals. I realize it could be so much worse, but it is hard to compare situations because everyones situation is BAD TO THEM. Everything seems to be gettting to me latley. It is hard there is no doubt and I think I am finally getting at peace with this and realizing all of the things I STILL CAN DO!  I wish this on no one, not even my worst enemy and blame no one for me having it. It is what it is and I hope with my experience, I can help save someone from suffering as much as I did.

Thanks for the support!

12 comments:

  1. I am so proud of you, Emily. Sure there are lots of things you can't do now and lots of things you have missed, but you make a difference every day. You have already helped so many people. I love you so much!!!

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  2. Just think about ALL the lives you have touched, Emily!!! How many people can say they have been an inspiration to the amount of people you have been an inspiration to? I still believe God has big plans for you coming up! I pray you get to feeling better soon. You are an amazing person!!

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  3. Thank you so much! I mostly think positive. Its not really like me to complain, I just try to accept it. It has just been a hard road latley.

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  4. Oh honey, I don't think you're complaining at all. I hope this blog is a good outlet for you and you feel that you can get ALL those feelings out. You have gone through more in your young life than most people go through in a lifetime. You deserve to freely reflect on all your feelings, both positive and negative. Nobody is going to begrudge you that. I just wanted you to know how amazing I thing you are. Blog away freely, sweet Emily! ♥

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  5. Thanks! I feel writing it and getting it out is better than holding it in. :)

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  6. Sweet emily, I pray for a cure and healing peace for you. I havent had the pleasure of being with you while you have grown up, but i grew up with your sweet mom. She holds a special place in my heart and you are right there beside her.

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  7. Emily, How in the world did you stay strong for three whole years through this? It's about time you let those tears out. I can only imagine how frustrating and life changing this has all been and I don't know that I could have held on for that long myself. As I said to you once before, it's okay to cry, okay to miss things in your life you wish you could have done. It's perfectly normal, acceptable and OKAY! It's scary not knowing what the future holds and the roller coaster you'll experience will not be a fun one. Go ahead be angry about that, I would be. But don't hold on to the anger and the sadness. Release it, surrender it to the heavens and know that you've just opened another spot for light in doing so. The one thing I know for sure is that it'll be okay, whatever it is, whatever your own reality becomes. It WILL be okay.

    All of this difficulty comes with a gift, the gift of gratitude for the smallest things, things most people never realize. While it might not seem an adequate trade off right now, you'll find out just how important it is. Great big hugs, young lady. You are a beautiful inspiration.

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  8. I think this was a great idea. I will definitely be following it. Have to look and see if I can get notifications, like I do for caring bridge when it is updated. I will never know how you feel going through all this, but I have been here to read about it pretty much from the start. It is amazing how close to your family I feel, even though we have never met. I know when I saw Baylie's formal pictures, I thought of you and how hard it must have been on you to know you have not gotten to do those things. Maybe things for you will never be 100% normal, but I pray that the day comes where you get to enjoy some of the 'little things' we all take for granted. I know when Brianna had her surgery, her big concern was whether she would be able to ride the roller coasters when it was all done. Lucky for us, her surgery was a one time deal and now she has no restrictions. I really wish it could have worked out that way for you, but you are so very strong and you will get through this all. Hugs to you!

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    1. Thank you! There is a link where you can put your email address in on my page that will notify you when I update. :)

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  9. Emily, honey, I signed up to receive your blog via email. I am excited!! Hi, honey, and nice to meet you =). I'm Valerie from central PA. I'm in my mid-40s and have had decompression surgery and have a shunt. I also have EDS and a few other health problems. I wish I had known that I had Chiari when I was in school. I was sick all the time and didn't know why! I missed out on so much, too! Thank you so much for having this blog!! It is so important to educate others and I am sure it has been therapeutic for you! Emily, it gets better! And where you lose out, you will become stronger in other areas! I am sure you are already noticing this =). I will return. Take care, sweetheart! Val xo

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  10. Thank you! I'm very fortunate that they found it early even though it seems so late since I have suffered my whole life. Glad you are doing better. This blog is totally for awareness! I want to save someone all the pain and suffering I have been through. Thanks for reading my blog and subscribing.

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