The Craniocoaster

At first I thought this term was a bit dramatic - but it pretty much sums it up quite well. I go days, sometimes a week without an appetite, next moment I'm munching on everything. I'm happy that we make progress, nauseous that we're one step closer. I hope for the Children's Hospital to say, "it's mild, he doesn't need the surgery" (although both doctors here have already said otherwise) but terrified that it will be left and he'll develop ICP or Trigon or Chiari or become bipolar, or heaven help me - some incurable syndrome caused by brain malformation....and then death? Now I feel I am being dramatic. It's all around me - words of what can happen.
I dreamt last night that a little girl died from her cranio and one of my teacher friends had posted their sympathies on fb over it. I don't think you can "die" from cranio itself, but cranio can lead to other more severe health issues that can be fatal. It felt very real to me. I woke up crying. That was one of very many cranio dreams I had. Cranio is in my thoughts all day - all night.
I have so much pent up emotions, waiting for a phone call. The phone just doesn't ring. Nobody calls. I asked my mom why no one calls and she says maybe no one knows what to say. I guess she's right. What is there to say? I don't know what I'm expecting - maybe just to not feel so lonely in my fear. I don't know. I know Mike feels what I feel - he just manages differently, probably better. My family is very supportive but obviously can't make it disappear. Although, I have had some people say to me, "oh I've heard about that. It's not that bad". I told Mike that, and he told me to ask them if they'd like the sign up sheet for their child. How true. Cranio happens to 1 in 2000 babies, yet there is so little known about it. I didn't know anything about it until now. Sometimes I wish I didn't know as much as I do now. The surgery for example, it's absolutely sick. Horrific. I wouldn't wish it on any child or living being for that matter. I doubt I'll give details on here - too graphic (and some of you it may affect too deeply, it would have me at one time) but I will say Sam will have one heck of a scar running from ear to ear if/when he has the surgery.
During my research, I stumbled upon another mommy's blog. She posted photos (most of the moms do) of her son after surgery. He had on the sweetest Small Paul jammies. It said "Chicks dig scars" with the Small Paul logo of course. I think I might look for it or something similar. I looked for that picture of that boy, but couldn't find it again. Here's a photo of Sam jumping instead, while Mommy blogs. Have a good day!