too tired

Ok, so we've been playing the  triangle game for a few days now. Basically we take 3 foods and put them in the shape of a triangle. Then we just touch the foods and applaud, clap, earn points, cheer, whatever after each touch for a total of 15 touches. When Adam does 12/15, we move on- but not till the next day. The steps are: touch, give it to me, hold it, touch your cheek, touch your lips, touch your tongue,  put it in your mouth and spit it out, put it in your mouth and hold it for a second then spit it out, then swallow.

We are only on step like 5 or something, but we are getting there. 

I'm also ridiculously tired and feeling a bit drained from all this. Maybe it's being around so many normal kids and the complaining stay at home mommies I am surrounded with by having summers off. I'm not sure. I wrote about this in my last entry and still haven't really shaken the worn out blues feeling I described. 

It's tiring always smiling with strangers. Saturday, I was at the town pool and Adam was playing with another little girl. They had the kiddie pool to themselves. I was sitting in the pool with them both and the girl's mom was away from the pool in the shade, I was watching them and the mother came over to me at one point thanking me for watching her daughter, but she couldn't sit near the pool because of the new baby. She was holding like a 3 or 4 month old baby.

She said, "It's so hard when they are at this age, I mean I just hate it, I can't take her anywhere in the summer, since they can't wear sunscreen at this age. It's ridiculously hard, you know. Well, thanks for watching Kaitlen"  

Me, 5 years ago, was like, yeah cool, whatever, I know what you mean. Me on Saturday faked it and said, "Yeah, no problem, I don't mind watching her" and I ignored the complaint.

Inside I was seething. Over dinner I vented to Phil, yelling and asking him if he knew when it would get easier. Like when will I not be angry. When will I not have to stop myself from turning on this mom and shouting at her, "Really, really? It's so f'in hard because you can't put freaking sunscreen on her? Try  3 summers with a hole in her neck, where you have to learn to take care of her, try never hearing her voice for over two years, no laughter, no crying. Try never leaving the house because of the tubes and monitor and nurses. Try feeding your child through a tube. When my son was her age, I had to insert a tube down his nose and check for placement with my stethoscope before I force fed him. Haven't you ever seen children in the hospital? Do you know how freaking lucky you are? You hate the summer because of  SUNSCREEN? " 

 And then to top it off, the insurance company denied a claim again. I can't even tell you how many times over the last four years they have denied claims, how many times I've had to contact doctors, file appeals, argue with them. It's ridiculous and very very draining. There really isn't anyone out there to help you with this. Last year was really bad with the feeding appeals and it really makes me upset. 

Well, in spite of the fact that Adam has been the same for years, I need to file another appeal. I am  honestly, really really worn out. It's not even a crazy denial, like it's not like the ones for his surgeries or extended hospital stays, it's just the denial that is breaking me. This is the one, the one too many, the one that is making cry. Enough already. You won. You won, insurance company.  I am done.  I am just too damn tired. 

Today I took Adam to a Bug Museum this morning. I was surrounded by more normal moms, normal kids.  Adam touched: a millipede, a tarantula, a scorpion and  a hissing cockroach.  I am wondering why he won't touch lasagna, tomatoes or corn on the cob. 

It's funny and ironic and I'm on the edge between laughing and crying... because I'm tired.