Tuesday, April 12, 2011

Hot Mess

Not sure who is the Hottest Mess around here. Me or the boys. I just spent an hour and a half with Sam in my lap, and half the day dealing with Chris's problems. I guess I don't just plain Vent very often here. But I am just so full of anger and frustration at I don't even know what, that I feel like I'm going to explode.
They say journaling is therapeutic, so here I am.
Chris fights me, on everything. Getting dressed, getting undressed, diaper changes, meal times. The therapist said it was everything transitional. Maybe, but it feels like he's as mouthy as a teenager, and not remotely willing to listen. He has 5 jobs: Listen, Obey, No Tantrums, Be Kind, and Respect Others. Sunday he did a monster offense at church disobeying all of them but Be Kind, tearing out of Grandma's arms, shrieking down the hall during prayers so loudly I heard him in the sanctuary. He made both Grandma and I very mad. And we left church. That's how he behaves daily, but most people don't see it, most of the time it doesn't happen in public. It feels like in any given situation he has to be the loudest, craziest kid in the room. As long as people are watching he's happy. I hate to throw out those stupid letters, the diagnoses that they gave us. My head and heart don't agree that they are right. Something isn't right, but if I say, he's got PDD, ADHD, and ODD, people change their tune, like oh my that's a lot. Not that their more sympathetic, and as much as I dislike the letters, they are show stoppers. If I want attention, if I want someone to listen and help, dropping those like a knowing a celebrity. But they are crappy d-list celebrity names.
The whole thing is so crappy. I can't even tell you. It's so awful some days I just want to run away, cry. But then I escape for a couple hours, and I miss them. Or Chris takes a nap after fighting half a day against it, and he wakes up all loving, and in a sweet mood. And it's like, why do I want to leave, then moments later he's acting snippy with me.
Speaking of snips, Sam is picking up brother's bad habits. He tells me to "Hushup". With his wonderful vocabulary, he actually told his brother today, "Bao (brother) no bumbee (bumblebee) ka (car), you in my gow (timeout)." That's 8 words, man. And the context, Chris has fallen in love with Transformers, and he's begun this game every time we're in the car, he's calling out BUMBLEBEE CAR whenever he sees a yellow car. I imagine Grandma Willman giggling hysterically because she hated yellow cars, and now we all laugh and call out Bumblebee car whenever we see one. Today, Chris got a timeout, and 5 minutes is a long time in the car for him to be silent. And he started to call out a yellow car, but caught himself mid-bumble. And Sam yelled at him. Oy. I've got trouble. And that's just what he's saying. Today he napped maybe 1/2 hour, kept crying, wouldn't let me put him down, just kept crying. Not sleeping. Making me crazy. Doesn't take much lately.
I took Chris to play therapy today. Chris loves it, he loves playing with Miss Lisa, she tells me what kind of worlds he created, today it was one of astronauts. I'd love to take Chris down to Florida at the end of June to see the last Shuttle take off. But on the other hand, I think we'll be stranded here, clinging to hospitals all summer long. I'm so frustrated. And jealous. Everyone I know is plotting great vacations, things to do this summer. And I'm like, Chris is having surgery. Oh and the money pit, we may actually move into it. Not seeing the joy there. I want to run away. Just a weekend, just Away. But where would I go, what would I do? We're broke, we've sunk every spare cent into the new house. I joke that once we're in, we'll never leave, not because we won't want to, but because we'll never be able to afford to. If I could pick up that house and move it to Guam right now, I would.
In my head I know God works in his own time, his calendar doesn't coincide with mine. But my heart wants to fast forward the next three months, and just have it all be done, and be able to plan my own summer. I bought Chris a swimsuit this past weekend, and I don't even know if he's going to be able to use it. With his feeding tube, he had to have a button on it, because they considered it an 'open wound'. This won't have a button. I guess we should consult with Dr. West. I booked an appointment next week with her today. I've been playing email and phone tag with her and the staff. I wanted to see her before Chris's next therapy appointment, which just happened to be the day Sam has his swallow study. So I thought Chris will go to school, Eric doesn't need to sit in on the swallow study, and Eric could grab him and bring him to Riley, where he'd see his autism therapist and Dr. West. Nope. She only sees folks in the morning...so I took the first available that day. 8:30. So he'll likely be missing some school. And after I made the appointment, I realized that is their Easter Party. Ugh.
I'm so peeved at myself, and the system, and everything. Everywhere I turn, nothing goes the way I want. In my head, I realize it won't, it doesn't have to, it goes according to God's Will. But there's a part of me going Blah, Blah, Blah. Just FIX MY BABY!
And I don't feel like anyone understands, not my family who has not been there, not the specialists, who want to put him in some autism labeled box, and friends who don't understand why I just don't think it's worth it to leave the house. Even with therapy there are times I feel so lonely. And I'm not writing all this to seek attention, I just realized that I haven't been getting Deep and Honest lately, because my deep feels so dark.
If anyone else out there is feeling deep and dark, just know you're not alone.


Stephanie B said...

Cathy- no, I cannot claim to have walked in your shoes or remotely understand. It sounds cliche to use all those "Sunday School" answers, doesn't it? Still doesn't stop them from being true, though. I know you know Who to turn to, even if it's hard. Find hope in the Cross- if any time was hard... painful... desperate... it was then. He knows. Even when the rest of us don't.

Love and Prayers,