When it Rains, it Pours

Chiari Carnvial 3
When it Rains, It Pours
Dealing with difficult people in addition to dealing with a difficult illness

As you all know by now, I'm 12 years old and in middle school. Well, actually I don't get to go to school right now because of my condition so the school district sends a teacher to my home twice a week (who is a very, very nice teacher by-the-way). Anyway, I hate having a condition that prevents me from going to school. I never thought I would say that but school is where I got to see my friends everyday. Sadly, my friends are moving on without me.

So, I'm still wearing this dang halo. And it sucks. It sucks because it is uncomfortable and awkward. But it also sucks when I'm out and about with my mom. Kids always stare and stare and stare at me and in their loud kid voice, "look at the strange boy, mommy". But the moms usually try to hush their kid and force them to move on. Please, look at me! Ask me why I have a halo. Take the time to understand what I have gone through.

I can't say that I have really dealt with anyone difficult. My parents take care of that for me. But I am dealing with a difficult illness. And I hope life won't always be difficult.

The Ides of Madness

Blog Carnival 2
The Ides of Madness
Alternatives to Breaking Down, Falling Apart or Cracking Up

Shalunya chose an appropriate topic, The Ides of Madness, for this month's blog carnival because March is widely known to be linked with 'madness'; linked in ways we may or may not be aware of. And by-the-way, March madness is not only about basketball. I believe the changing of the seasons and March equinox contribute to March madness. But this post is about Kyle's Ides of Madness with Chiari Malformation, the alternatives to breaking down, falling apart or cracking up.

Kyle is the one living with Chiari and I am the one supporting him. Sometimes, I can feel his madness, or maybe it's my madness. One of the most frustrating madness is when people look at him and are not aware of his pain. They are not aware of what he has gone through, what he will go through. They don't know he is trying his hardest to live with his discomfort. They don't know that he is heartbroken to never again be able to do things he use to such as ride roller coasters or continue with his Karate studies. But Kyle doesn't want people to pity him. He just wants people to understand him.

Kyle is strong mentally. He is not shy or afraid to speak his mind. He is not embarrassed of his scar or his halo. He doesn't care that people stop us in public and comment about his halo. But people feel like they have to say something that makes everyone laugh. Most people joke about it and Kyle goes along with it even though there is nothing funny about Chiari.

Keep Moving Forward

Kyle's alternative to breaking down and falling apart is just being Kyle. He is a 12 year old kid that loves to tease his sisters, avoid house chores, and play Xbox and Minecraft online with friends. He still plays with fire (yikes, I know). He still makes dinner for the family when it is his turn. He still helps out his dad at the shop.

I think he doesn't fall apart because he believes he will be ok. He believes everyday will be a good day. He doesn't concentrate on his pain or discomfort. And even though he often tells me his head hurts or his pin sites hurt he never takes any meds. I think he just likes me knowing how he is feeling. I think he likes me hugging him and letting him know I am here for him for whatever he needs.

Yeah....A Good Sign

So we took Kyle to see his neurosurgeon today for a follow-up and to get the results from the CT scan from last week. Kyle's doctor was impressed with how well Kyle is managing the halo, and he said his pin sites look very good and clean.

The doctor assessed Kyle's strength and expressed Kyle has definitely improved even though Kyle is slightly weak on the left side of his body compared to his right side. Which is a bit strange because Kyle was extremely weak on the right side of his body before his surgeries. Anyway, the fluttering in Kyle's eyes are nearly unnoticeable now...which is a good thing. Two disappointing issues are Kyle's voice is a bit hoarse again and his swallowing is a bit labored again. Those two things may not improve.

So, the results from the CT scan did show 2 very small areas, where they grafted in bone for the fusion of his cervical vertebraes, has finally started to grow. Yeah! And there was no change (no movement) in the 2 bones (I can't remember the name of one of them but it is next to C2) compared to February's CT scan. Yeah! The downside is that Kyle may be in his halo for a bit longer than the original plan of 6 months. But I think he will manage.

Thank you everyone for keeping Kyle in your thoughts. It helps!!

Shannon's Hope Foundation

Please take a moment to read about Shannon's Hope Foundation, a non-profit organization devoted to increasing awareness on Chiari Malformation.