There are two chiari patients in NY right now getting treatment... one of the moms I have become very close with... I feel like sometimes we have to back each other up, because we chose to see better doctors (in my opinion). The other one is new, and I'm just getting to know her. The newer one's daughter had surgery today... there was a complication, where they ended the surgery, to get a handle on this other health issue.... I have been reading her Caring Bridge... and everything she wrote brought back so many memories... ones we faced literally almost a year ago. I have been struggling a lot lately, I would say for the past 4 months, being so emotionally involved with some of these patients.... mainly the kids, and parents... probably because I can easily relate, and remember being in that position. I feel like I go through these highs and lows with being involved in the chiari community. Something good will happen, for an example: we have a new neurosurgeon coming to OKC, that has worked with the TCI docs in NY... so he will really know chiari, and I have been in contact with him... so I have this "high" of things are going to change in OK, and other neurosurgeons are going to understand this condition a lot better. I have a doctor willing to get involved with ASAP here in OK.... it makes me feel great, that a difference is really starting to happen... that putting on all these meeting, are not for nothing. But then a "low" will come ... where I will watch friend's child go through the ringer dealing with this condition.... or like today, the problems with the surgery with that child being so out of whack... that I just wished I was not involved anymore... so I wouldn't be emotionally attached to these people. No one tells you that part of all this.... the part where you worry about other peoples kids... worrying that it could be your child one day, or sometimes the guilt you feel because your child is doing so well, and others are not. I know I should never feel guilty because Kaylie is doing well.... but it upsets me to tell others when they ask... yes, she's having a great day, or has been doing so well.... when their child or them are suffering so bad. I'm a fixer... and when I cant help, or fix the problem... it frustrates me, I feel like I am in limbo with things.
So... with all that said, I am going to try to start blogging more... I'm serious this time, I know I have said that... how many posts??? Let's don't count! Tonight I am going to start with my anger about a post that was in a FB group.... how a doctor told a parent that children under 6 grow out of chiari.... I didn't even get through the whole post, b/c I was so mad. Not at the parent who posted it, but at the doctor that said it! I am really hoping it was a miscommunication, because if it isn't... just means awareness is that much more needed! All I could think about was all the littler kids in my groups that have all had surgery... one as young as 18 months.... it just kind of sounded like we as parents put our kids through this horrific surgery for no reason... like we should have waited for them to grow more. I know I can easily say, along with the rest of the parents I know... if we would have "waited" I don't know where we would be at right now. How much more Kaylie's brain would be damaged, or all the nerves that are dying off, because they are so compressed... or even brain tissue, from being overly crowded. It's a scary thought... but that where I as a support group leader urge patients to get more than one opinion, regardless how well you think a NS knows this condition. But... I don't know why I am so surprised... b/c one of the biggest things I hear from adults in my groups, is how long it took for them to get diagnosed, or correct treatment... b/c it took them that long for a doctor to figure things out. And this is a scenario where it gets my blood boiling to a "high".... to keep doing everything I am doing... this is why awareness, and support group meetings are so important.
P.S.~ if you pray, say some extra ones for the two chiari warriors in NY right now, they could really use it!