Hiding my tears

I hide my tears a lot.
As much as I say that "Life's too short to not share how you're feeling", I still hide my tears.
Men aren't allowed to be vulnerable. Why? I wish my Mom were still here to talk to, to comfort me. If men could be vulnerable,
and allowed to be comforted, would there be less violence in our history?
I hide my tears from my wife.
Just tonight, we were putting decorations on the tree, and I realized just how much Ani can't interact.
I had here there with us to watch, to be incorporated, but she still has lost so much.
I can't hide my tears from her, not any more. I whispered in her ear, and put an ornament in her hand, just so she could feel it, and I
told her just how sorry I was she couldn't physically participate. Perhaps next year she'll have an augmentative speech device, and she
can direct me to where she wants me to put ornaments. THAT WOULD BE AWESOME!
Sometimes I hide my tears from myself, maybe that's how they sneak up on me in the car. Maybe the tears are always there, just waiting
to be triggered.

Those of you that pray, pray for accomplishment for Ani

On February 20th, we go in for an evaluation for augmentative speech computers for Ani. Her teacher at school had seen a new device by a company named Tobii that uses twin cameras on a tablet computer to do eye gaze tracking and speech augmentation. It's essentially the same mechanism that the astrophysicist Stephen Hawking uses. You look at an icon, then blink to "select it". You look at another, and blink. Lather/Rinse/Repeat and you have a sentence that the machine can "speak". I've been reading this book called "Out of my mind" about a girl born with CP and a complete inability to communicate physically, but she has a full fidelity brain and mind. She eventually gets a speech machine that she uses a switch at her thumb to operate, and it stuns all her classmates in 5th grade to find out that she has thoughts and understands. I already know that Ani has thoughts and understands. I know she has hopes and dreams, but I can only guess at them. I WANT TO KNOW HER HOPES AND DREAMS. Of all my prayers for things on this earth...I want her words back. The words won't make me love her any more, but I will be able to serve her better, and have an idea of where she wants her future to lead.
I've spoken to Ani about this possibility, and, given the book I'm reading to her, I think that she's excited about the possibility. I'm asking her to practice first, look at something, then blink, practice, practice, practice.

An unusual and difficult day

I remember that day.
The day we needed to prove we could care for Ani at "home". (Disclaimer, at that time, there was no "home")
The day when we traded in our "Parent" hats for our "Care-ent" hats.
The day when we needed to do more than sing to her or hold her hand.
When saying I love you wouldn't feed her.
When reading a story wouldn't give her the medications.
When holding her hand wasn't enough to change her position.
When a hug wouldn't get her into her wheelchair.
When a road sign next to the Hugo firehall said "Welcome home, Annika".
When I had to try to protect her again.

I love you

Ani,
When I feel the bump on your head as I wash your hair,
and know that it's in your brain,
I love you.
When I see the scars on your left hip from surgery,
and I know that you'll have a matching one on the right soon,
I love you.
When I see your light fade from your eyes during a seizure,
and then it returns to me,
I love you.
When I praise you when your eyes are working,
I love you.
When I remember that the shunt and the surgeries were decided by me,
I love you.
When I think that if I just gave you a little more love, or had less failings, that you would be healed,
I love you.