Soap box, sorry

So I understand not everyone is looking out for my feelings. Nor should they have to. But wow, some of the posts that I scroll through on Facebook are insensitive. I’ve had to delete two “friends” recently because of derogatory remarks, I did not even comment on their posts although the one today I wrote a long explanation why I was deleting her then I erased it . One used a gun pointing at a girl with a ‘boom’ emoji series and the other flat out said they wished they could blow their head off if they had a gun. Nice. Both clearly know, the first friended me right after because of what happened, the other just knows. Like I said before, not everyone should walk on their tippy toes because of me but really? Also, the second one is a fellow chiarian. I understand her pain. I understand completely. I am in pain EVERY single day but no one knows. I do not blast it all over social media for the world to know.

Speaking of chiari, and a different subject, most had forgotten Zane even had it. He seemed to have been doing so well after his brain surgery that no one asked. Sometimes I think he was fooling himself. He wanted to feel better so bad. He wanted to feel normal. He wanted to be pain free. And I know he was depressed about not being able to play football. Before surgery is when his anxiety was at an all time high. Zane would have a panic attack before even going to school for fear of having a headache in class and getting sick. That’s why the beginning of his sophomore year we decided online school was the right thing to do. After surgery he felt so much better and when he was ready, back to LHS he went. My smart, bright, super intelligent, whitty, quiet young man was doing great…so we thought. As with any teenager Zane had his ups and downs but was generally happy. Especially after he got Mia, his black lab. They were perfect for each other, both were ridden with social anxiety and loved to be in a dark room. Perfect. In March we were able to buy him his first car, a Dodge Challenger. He loved that car. Him and Joe had plans for it. Joe is planning on finishing it with Daniel and the boys and showing it eventually. The beginning of the summer was going well too. We took a family vacation to Ruidoso. There was 13 of us staying in a cabin and had a blast… hanging out, talking, ziplining, shopping, eating, hot tub, playing cards, and hiking. Zane, TJ and the rest of the guys went fishing. He was so excited to fish with Pawpaw. That was his main objective on the trip. The trip was a success.

After that his sleep habits changed and I didn’t see very much of him except when he would have a drs appointment here and there or when I made dinner. Zane mentioned to me that his anxiety was giving him a bit of a problem so I told him I would get him an appointment with our family Dr. I had also just talked to my neurologist about him taking him as a patient even tho he was considered pediatric and he agreed to if I could get a referral. I was literally in the works of doing that because his pain was coming back with a vengeance and I wanted to get it under control. I felt like we still had good communication tho. We talked EVERY day, he just seemed to be sleeping more. Maybe the pain was worse than he let on, I don’t know. He was good at making things minor, just like me.

All in all chiari malformation sucks. I hate it. It’s devastating. There is no cure. Surgery does NOT fix you. Surgeons will tell you that you’re fixed but you’re not. Mine knows I’m not cured that’s why I’m seeing a pain specialist and a neurologist. Headaches are not the only symptom. You see the school should have done their research on Zane’s condition before labeling him back at homecoming. He did not die by suicide for attention. The pain from chiari causes anxiety and depression, especially in teens (and seeing his picture on the wall would not have promoted suicide btw).

5 thoughts on “Soap box, sorry”

  1. I agree with all of the above. I love you, friend and I’m always here if you need someone to talk to. So many people are carrying scars/pain that nobody ever knows about and social media has made some people so insensitive to others and how other people might perceive them, or maybe they don’t care. I don’t know. I’m sorry you had to go through that. I know in may not have seemed super supportive, but in truth, I just don’t know the words to say. I can’t imagine the pain, both physically and emotionally, that you have to face every day. You are so strong and always know that I am here for you. Love ya!

    Liked by 1 person

  2. I am still shocked the school would not let my cousin hang her precious Zane picture on the wall. I love u and the rest of the family (excuse my language but fuck everyone who don’t like to read your post I love reading them it makes me feel I’m beside u and we’re talking keep up the good memories sweetie love u so much and Zane is missed by a lot of people.

    Liked by 1 person

  3. I love reading your blogs, Carrie. I can not begin to imagine how you’re feeling. The pain. The loss. I just can’t fatham it. You are seriously one of the strongest most beautiful (inside and out) people I have ever met. I am truly sorry for all you have endured. Please know that my thoughts and prayers are with you. Love ya girl. Oh and don’t forget to take care of you too!

    Liked by 1 person

  4. Carrie you are strong in the Lord and the power of His might, you overcome all the fiery darts of the enemy and nothing shall by any means harm you , In the name of Jesus ! I am so proud of you! You are a warrior! I plead the blood of Jesus over you and your family. Set your eyes on things above and not on the things of this world. Our citizenship is in heaven where we will rule and reign with Christ Jesus forever. There will be no more pain, only joy unspeakable and full of glory! Until then , you are a light in a dark place. The love of God grows mightily and prevails in your life. I love you.

    Liked by 1 person

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