my two states of being

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.


Josh said...

"planning ahead"

hahaha.. good to see you haven't lost your sense of humor!

Megan said...

whore! see i try and plan for things so everything gets done and people say i am crazy!

Terra said...

I just explain to people that you are working one step from a heart attack :)

Also, can I make a t-shirt for Emmeline that has "Don't let the smile fool you- I am a mean spitefull baby!


Don't let the smile fool you - you are almost close enough to puke on, just one more step!

I'll keep my fingers crossed for the new Dr. to work out.

Brittany H. said...

Megan, I feel so much the same. I keep waiting for a therapist or doctor to say, "Just kidding, Claire's fine!" Hasn't happened yet...No one will tell me anything because "every child is different" and crap. I have no idea what to expect! I know our daughters are going through different struggles, but just know that I haven't found a place between the two extremes either. You're strong and I know you're going a good job of keeping your family sane!

Whitney said...

Oh man you are totally living my worst nightmare. I'm so sorry!

It totally makes me mad when the Dr.s look at you like you are stupid. YOU are the mom and you know whats best for your kid. DUH!

I'm totally a pessimist too. I am always thinking of the worst possible senario. I guess its a bad way to look at things, but then I'm not let down when the worst thing doesn't happen.

Anyway...I wish you were closer and then you could come vent to me. I wouldn't have much to say but I'd listen. Hang in there!

Crystal M. said...

I just found your blog through the Kurby family blog, I just wanted to say hi and your kids are ADORABLE. My daughter Eva also has CHARGE and I have a blog you are welcome to read. I am on the yahoo group as well just not as much as I use to be.
I hope everything is going well.
Crystal and Eva