My silent one.

My silent one, look at me, I'll understand.
Your words are still in my ears,
Your song still in my heart,
Your jokes still in my laughter,
Your dance still on our floors.
Never fear, precious one, you still have all of those things...we're just watching over them, keeping them warm for a while.



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The tube

Ani's feeding tube is almost a symbol for her complete dependence on outside help. I cuddle her, I lift her, I laugh with her...But when I have to use the tube, her condition slaps me every time. I both love and hate the tube. It keeps her alive and with me, yet keeps her a slave to me.


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Short sighted

Interesting things hit my brain throughout the day...
I was just thinking about Micah's nite-nite routine...He's just adorable during it.
It's a nice time to be quiet and close to him.

After I thought about that, I was thinking about Ani's nite-nite ritual before the
tornado. It was usually lengthy, she would always want this-and-that, be close on
her bed, and more stories and such. I remember that her ritual had this slight
irritation associated with it, just _because_ she wanted so much time.

How stupid and short-sighted I was.

Now, the biggest thing I pray for is the simple ability for Ani to be able to
direct _my_ actions. To _ask_ me to do things for her. To request more time
from me to spend special time with her.

Wow...

Christy and I went to Mickey's diner in downtown St Paul last night. We had been there a year ago, 2 times ago when Ani had her rods lengthened. We got to talking to the cook, he had been there the last time. He kep us talking, so our whole story came out. He said that our story was one of the most heart-wrenching stories he had ever heard. Wow. Really? He must have heard so many stories, he's right there behind the counter. Maybe I should feel more depressed?

No, I think I'm doing fine.

Praying with Ani.

Since Ani said "Yes", I need to pray with her more. Last night we prayed for others with "Locked-in syndrome" (I explained to her what it meant) that cannot do even what she's capable of doing. She can laugh, others cannot. She can smile, others cannot. Pray for them and their families to be able to make _some_ connection and understand how much they are loved.

Last night's snuggle session with Ani

I got Ani ready for bed, and then lay down next to her. She was so comfortable, and it ended up being the very best session where she was able to do thing voluntarily that I've seen in a LONG time. I had my arm draped over her, holding her hand. At some point she squeezed my hand for some reason. I thanked her for it, and told her that if she ever wanted to squeeze my hand again, go ahead and do it. She squeezed IMMEDIATELY. Awesome. She was able to turn her voice on a lot, and really tried to use her mouth to make words. There were a lot of syllables, but nothing recognizable. I asked her if it was easier because she was comfortable and there wasn't a lot of distractions, I got a fairly positive "yes" to that question. During my singing, there's a Hanna Montana song (I've mentioned this song before), where there's a dramatic 3 strum pattern and Hannah (me) sings "Hey!". Usually I do the strum, then stop and say "What?" to Ani and won't continue until she vocalizes. Last night I wasn't going to stop, because she had been doing so well with her voluntary will. Well, SHE DID NOT DISAPPOINT ME! She vocalized right on time in the right spot in the song!
I have such faith in her. I know my Ani is in there. Different from Ani 1.0, but still Ani.

Micah is now older

Well, Micah has passed the artificial milestone of being older than Nate was when he died. It is still so (explicative deleted) difficult to write the word "died". There's a whole raft of emotions along with this milestone. I actually said something like "when Micah goes to college" to Christy this morning.

When did I start allowing myself to think of a positive future?