The Twins...........

MUTT AND JEFF

A thought...........

This is going to sound really weird but then why should anyone be surprised to hear me say anything weird?

I've been thinking about Levi and the ups and downs we've had and I think that I am a coward in some ways. It is "easy" to think about him passing and what I "think" (because one can not even fathom what one would do unless they actually experienced the situation) I would do and yet facing him living sometimes is even harder. The day to day grind. I thought to myself this morning, "quit thinking of him passing Rachel and LIVE! Pretend he is going to live a really long healthy life and get over the drama of "if he goes..........". In some ways.......that is also hard to face..........it is a lot of hard work. Don't get me wrong. I would have it no other way. I love Levi beyond even my understanding. It is just exhausting and hard work having him live too......and that makes me sound like a really horrible mother...........The longer he is with us........the harder it will be when the time comes.

Today he took FOREVER to get to school. At one point I had to carry him across the street kicking and screaming because there were cars and even though they were waiting for us THERE WERE CARS AND WE CAN'T CROSS THE STREET! How do you explain to him that sometimes it is okay to go in the street when there are cars..........I need to go and lift more weights. He is just getting too big for me to lug around.

Bummer

The neurologist e-mailed today and said that no, these kids never grow out of their AHC...............bummer.....................

Caught in the act..............

Levi and hope

I realize that my next statement will be humorous to those that really know me but here goes.......I am trying to be serious. (I know, I know.......me being serious BUT I AM.)

It has been six months since Levi has had a full blown attack! He has had problems and issues but not a full blown AHC attack. I am trying to be realistic here but there is this HUGE part of me that wants to think, hey, maybe it is over! Can that be possible? Okay, so I look at him and he is still mentally handicapped and he does things like today where when I picked him up from school he came running up to me and said, "hi mom, nice ta meet ya"! (Where in the world did he pick that up from?) It was the darned cutest thing though. Or the other night he was so proud of himself because he'd finally eaten all of his peas and so with a mouth stuffed with peas he spewed them forth as he proudly said, "I eat my peas mom"! At least that is what it was supposed to sound like. Kind of hard when your mouth is full of mashed peas and they are flying out of your mouth while talking. Hard for mom to keep a straight face. Who am I fooling? I didn't. I busted up laughing.

Anyway.........I look at him and I think, do I dare hope? Is it possible to someday look back and say, "ya, remember when? Those sure were tough times but it only lasted for the first six years of his life and he has been normal since"! Wouldn't that be nice?

Would people think me a horrible mom if I admitted that changing his diapers and dressing him everyday and feeding him and bathing him etc. etc. etc. is tiring and it would be so nice if he could do these things himself.......

Today while at the grocery store he started to melt and as I watched him and the concerned produce man came and offered he and his brother who was also melting a banana I thought, I bet he thinks Levi is a badly behaved child and I'm a horrible mother for not having better behaved children. It occurred to me when I introduced Levi to someone recently and he looked at them and said, "I'm handicapped" that I must tell people this often to justify why he acts the way he does instead of shrugging off his behavior and letting them think what they want.

Sometimes people try to engage Levi in conversation and then look at me puzzled when he either doesn't answer or he answers in garbly goosh and then I tell them, "he's handicapped". Do I tell them this to make me feel better? That somehow it is a reflection on me if he acts like oh my goodness!!! A two year old?

I do expect certain behavior from Levi. I don't care how old he is mentally. He can't act naughty. It is interesting though people's reactions. At first they see a big child acting like a two year old and sniff down their noses. As soon as they find out he is handicapped they are all sympathetic. Kind of irritating in some ways and yet eye opening in others. Makes me realize when I see a child acting like a beast with an exasperated mother I'm not so quick to judge.

So, I keep hoping. I want to hope. Dare I hope?

Conversation with Matthew

Matthew: Mom, when I have my birthday we're going to need to have my party on another day than my birthday.

Mom: (Thinking to herself......why? Is your birthday on Sunday? And who says your going to have a party?) Out loud: Why?

Matthew: Because I'd have two cakes in one day and that is just too much cake...............

Mom: Huh? Two cakes?

Matthew: Ya, one for my birthday and one for my party. I just can't eat two cakes in one day.

Mom: (Thinking to herself........you're birthday isn't until NOVEMBER! And when have I ever given you two cakes?) Out loud: Makes sense to me!

Levi lost ANOTHER tooth!

Sometimes Levi gets meat stuck in his teeth and he'll come to me and say, "my tooth is stuck". This translated means, "I have some food stuck in my teeth, will you dig it out for me".......

Today Levi was eating lunch and he got a funny look on his face. He was eating a cheese taco. He told me, "my tooth is stuck". I checked and with a mouth full of cheese and flour tortilla it is a good thing it is the front tooth that is missing or I'd never have noticed. I told Levi, "you lost your tooth! Where is it?" He swallowed and gave me a grin and said, "gone"!

Good thing he doesn't care about the tooth fairy..................

Mom: Levi, where is your tooth?
Levi: I dunno, I lost it!

Duh!