for the past year and a half i have had two ways of thinking that i use.
1) Holy crap my kid has special needs!!! What the heck do i do now!!
2) This isn't so bad, i think maybe i can do this.
i have found that i don't use what would obviously come between these paths. there isn't a transition from one to the other but more like a violent shove. i can feel OK one minute but then i realize how fragile that moment of "OK" is when i get shoved to the other side by something that probably shouldn't be a big deal. it doesn't have to be something big though. just something, anything. i think this is because i never feel really, truly safe in any moment of happiness. i am always waiting for the next "thing" to happen and so far it has. i have just reached a point where the pain is so consistent that it doesn't hurt. i can live like that for a long time. thinking the pain has stopped. but then something little happens and all the pain comes back.
i know, i know. it sounds so dramatic. let's take the last five minutes as an example. Emmeline climbed over and wanted me to hold her, which i did. then she wiggled and her extension unplugged. leaking stomach "stuff" all over me. twice. did i mention that i just showered and put on clean clothes? i try and regroup. em is playing with a paper on the desk. she grabs for the keyboard and almost deletes my post. i say no. she bursts into tears like i just slapped her so i try and calm her down and what does she do? yep. pukes everywhere. but of course waits until i have her in a full cuddle. that is just my last five minutes.
i will admit it is easier to deal with crap from Emmeline because after all she is just a baby. a mean spiteful baby but a baby none the less. this morning, however, was filled with yet again with medical "professionals" who thought i was annoying and uneducated for questioning their orders. it makes me sad that more people don't question their doctors, but it was evident with the way they "handled" me that this wasn't something they were used to.
hopefully i will soon have a doctor to back us up instead of question everything i have done that has successfully kept Emmeline alive, happy, and growing for the last year. the pediatrician i have been begging to see has agreed to take Emmeline in his practice. now we only have insurance to stop us. see, planning ahead.