I get told a lot, "I don't know how you do it", and a lot of, "I can't imagine..."Yes, it is a lot to take in... Chiari is one of those hard to explain, hard to comprehend conditions, that no one can explain why it happened or how/what caused it to happen. That is why awareness is SO important! There is so much research going into trying to answer those questions... and looking at the genetics of it all.
I don't know how I do it either.... I spend a lot of time, reading, researching, watching video conferences that doctors have done, fundraising (for my daughter, right now).... all along with taking care of my family, and soon starting another semester (low key one) at school. I'm tired, I'm emotionally drained, stressed... and everything else that comes along with it all. But I do it ALL for her. I am doing it for my grand kids... that hopefully several years from now I will have. I do it for all the other parents, that at this very minute are finding out that their child is diagnosed with Chiari 1 Malformation and/or Syringomyelia. I do it for all the adults out there, that have been passed from doctor to doctor... trying to find out why they feel the way they do, or that it has taken so long for them to be diagnosed. That first month of finding out... was the worst!!! I felt like someone had put a huge bolder on top of me, and I had no clue how I was going to get out from under it. And I had to find a way.... because if I didn't .... no one else was going to do it for her.... she can't. She is only 5. This is why I do what I do. This is why I have a blog for her, a Facebook page, awareness bracelets made, shirts made... because once we get past this huge hurdle of surgery... I want to make a difference for the Chiari & Syringomyelia World. I want more chapters started in Oklahoma. I want these well expert neurosurgeons to come to Oklahoma and do conferences here, to help our local doctors learn more about this. I want to fund raise for more research, and especially in the genetics of it all... so that my great, great, great grandchildren don't have to go through all this.
I have been contacted twice through Kaylie's blog from parents that their child was just diagnosed, and told me that Kaylie's blog has helped them a lot. Everywhere from information, to just not feeling alone, and that it made them feel better. Hopefully there are a lot more out there, and they just don't contact me... which is fine, I'm just glad it's helped/helping someone.
So... this is "how" & "why" I do it.... I know every parent would!