Ever gotten on a roller coaster because you felt like you had no choice? Maybe your friends talked you into it and you thought, okay, I can do this. And then you start climbing that hill and you want off. Good lord you want off more than anything in this world, but it's too late. You're already strapped in. You're gripping the rail in front of you so hard that your fingers are turning blue and while your friends are throwing their arms in the air and screaming, you're holding on for dear life, praying the straps are accurately secured, and trying your best not to soil yourself?
That's how I feel this week.
I want off this damn roller coaster.
I've had enough.
My family has had enough.
My son has had enough.
He had to spend his sixth birthday at the hospital. And I'm not even gonna try to sugarcoat that. It sucked. And when he figured out where we were going, he did what he does. He screamed a lot about it, and then when we got there, he asked to be carried in, and then when it was time, he pulled himself up, got poked and prodded, and did what needed to be done. That's who he is. He's anxious and scared.....but when the shit hits the fan? He's one tough kid.
And (please excuse my language right now but this is actually very tame compared to the words I'm saying in my head.....) the shit really hit the fan this week. It hit the fan and exploded all over us. I know; I paint a pretty picture. Right? ;)
He did gain weight which was awesomesauce.
Seriously awesome and much needed.
But we also met with a team of specialists who feel there may be more going on. That means take his already crappy chronic illness and autism and add even more to it. Seriously?! And the more that may be going on breaks my freaking heart. It has to do with possible swallowing problems and nerve endings and intestines and chronic pain. And I don't even know what to say. Literally.
We are not where anybody thought we would be almost two years into the feeding tube.
We are not where anybody wants us to be.
We are struggling.
We are running even more tests.
We are starting new drugs.
We are considering the option of more feeding therapy.
We are learning that, most likely, he has even more pain than he lets on.
We are letting that information sink in and it is breaking our hearts.
And then I look at this picture of him that very night. Playing with his calculator that he got for his birthday. His calculator + that smile + the day we had = toughest kid I've ever met.
This kid is amazing.
His mama is tired.
And she needed to vent.
So thanks for reading about poop and pain.
You're welcome for the awesome imagery.
Please pray for us.