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.

Can I just simplify?

I get wrapped around the axle trying to explain the information I get from Ani. I use words like "Ani indicated to me", or "Based on Ani's answers...". I want to stop that. I think I'm just going to go back to before, and say "Ani told me", or "Ani said". I'll deal with the potential questions of "Did she use words?". Like it's going to go unnoticed when Ani gets her voice back.

How could I be more proud?

How could I be more proud of you, Ani?
I'm watching you sleep. Did you know you're beautiful?
You must, I tell you every day.
You are living my greatest fear, yet I see courage, I see strength.
Where I think I would feel anger, you laugh and are happy.
Where I think I would feel fear, you show me faith in our God.
Where I would feel disabling pain, you sing through the sobs.
Where I think I might feel like wanting to die, you look at me and somehow manage to say "I love you", with no words. Directly to my heart, giving me the strength to walk along with you.

"Little things" can really last.

I was putting on my dress shoes this morning, and I finally decided to write down what I feel every time I do this.
These shoes were bought and given to me by a close friend so that I could dress up for Nate's funeral.
Now, I'm not sure what "level of importance" my friend attaches to buying me this pair of shoes, but from my perspective, it's a pretty big thing. I remember the time, and I remember the gesture. Every time I scuff these shoes, I feel a little bit guilty, because they have such importance to me. They're quite high quality shoes, so I expect that I'll be remembering this for a long time to come.

An indulgence

I allowed myself to vent some frustration in the car on the way to work this way.
I was thinking that I just wanted to yell a few times.
"I WANT THIS TO BE DIFFERENT!!"
"I WANT ANI TO BE BETTER!!"
I know my God is big enough to handle my frustration.
I'm not angry, just frustrated.

"Out of my mind" by Sharon Draper

You must read this book. I'm only on page 14, and it's just amazing.
It's about a little girl (written when she was nearly 11, through the very small amount of physical control she does have) who was born without the ability to communicate back to the world. Her parents discovered her mental and communicative abilities after many years.

My VP in charge of global R&D suggested this book to me.

I have to stop reading it at work or I'll be crying.

Here's a snippet on page 14:

Everybody uses words to express themselves. Except me. And I bet most people don't realize the real power of words.
But I do.
Thoughts need words. Words need a voice.
I love the smell of my mother's hair after she washes it.
I love the feel of the scratchy stubble on my father's face before he shaves.
But I've never been able to tell them.


This resonates so much with me and talking to Ani.

Sometimes my muscles fail me.

Sometimes strong emotions make me stumble. I was just clearing up stuff, and ran across a bunch of hand-made "Get well" cards that Ani's classmates made for her when she had her hip surgery. My knees buckled and had to catch myself as I felt all the emotion and affection that the kids had shown to Ani.

Joy replacing sorrow?

There was an article a couple of days ago by one of the pastors at our church. He and his wife had lost their adult son. He went on to say that slowly by slowly Joy replaced Sorrow. I'm not sure I agree with that fully. I believe that Joy can _overcome_ or be stronger than Sorrow, but as imperfect beings, I think that Sorrow will always be here with us. I am still sad about Nate. I am still sad about Ani's injuries. I am happy about where Nate is, and that no matter what, Ani will be perfect in heaven, and she and I (and Christy and hopefully Micah) will dance with Nate in praise of God. Though my sorrow is still there, I laugh in pure Joy with Micah and Ani, and the beauty of this world. In a way, it's probably a lot like how we should treat forgiveness. We should strive to a place where God's love and forgiveness through Jesus should overcome and be stronger than our guilt or shame. Certainly we should remember our mistakes and learn from them to not repeat them, but they are part of us. Though guilt and sorrow are part of me, they do not define me.

I'm OK with being sad in the car when I'm alone, because I know where Nate is and where I'm going.
I'm OK with laughing loudly.
I'm OK with getting lost in my singing to Ani.
I'm OK with forgetting about my missteps when I'm playing with Micah.

At this point, my Joy overwhelms my sorrow most of the time. But my sorrow still jumps out and surprises me sometimes.

Dump the icky, strive for the beauty.

Grace is such a difficult concept to receive. As a parent, I understand giving it, but have difficulty receiving it. A recent sermon points me to think that we aren't supposed to wallow in our guilt over things we've done (or are _going_ to do), but to seek God's grace and strive to give the same to our world. I've also been feeling guilty about not practicing my violin since July.

My teacher took the summer off, and I guess that I did too. I had certainly been improving, but maybe not at the rate I wanted? Maybe I expected too much, being a guitarist already, anyway I felt guilty at not practicing more. You can imagine how guilty I felt over not practicing all summer. It's weird, I feel good playing the violin, but there's this resistance I feel. Anyway, I finally confessed to my teacher, and while not saying it, hinted that stopping might be a possibility. Maybe I didn't even realize that I might have been implying that, but my teacher did. She stressed (pun intended) that the violin can be source of peace. I agree. Also, she told me that she thought I had a talent, and actually had shown impressive progress after having just started it in May. All of this kinda melted away the guilt and weight I had. Now I want to play again. She told me that we could structure my lessons to require less outside practice (Micah and Ani wear me out and I just crash at night).

This was just a incredible show of grace. She's certainly not getting rich off of the lessons (they are really quite cheap), she really has a passion for teaching.

So, I don't need to fixate on the ugliness of my mistakes in life, or some of the "ugly sounds" from my violin. I just need to keep going forward.

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Sadness and shadows

There is a place of sadness and shadows in my heart, in my soul.
When I look into it, it feels cramped and dank.
There are forgotten things scattered on the floor, things lost and mourned.
Though cramped, this place seems infinite, accepting everything thrown into it.
There’s a one way door, with a window.
I observe what’s in there, but I can’t get things back.
Into this place spills my unheard “I love you, Nate”.
My heart bursts with this phrase, unable to give it to my son.
With him gone, my un-shown love is pulled into the shadows, lost on the floor.
And my heart goes on filling with my love for my son.

Ani, I am still with you.

Ani, though you've only been at camp 2 days, it's felt like years.
I am with you right now.
I still whisper my daily prayer to you as I pass your empty room these mornings.
You are with me right now.
I try to sense in the empty space, what can I do to serve you, to comfort you, to strengthen you.
I see you through the eyes of my heart.
I have pledged you to God, I have pledged myself to God, I have asked God for the job of caring for you.
I wait to hear your words to release me.
I want so very much to pay back my failure to protect you 5 years ago.

Ani at camp

My dear daughter, you are at camp and I am almost beside myself because I feel so out of place. I’m not serving you, nobody in your family is serving you, and though I trust those around you, they’re not your family. The conflict within me between “she needs to have her own experiences without me” and the “I need to serve her” is difficult. The camp called and she is uncomfortable and did not sleep well. Is she homesick? Is it actual pain? This was not the call I wanted. The only call I wanted was after a few days to be told that she’s having a blast. Well, she’s a complicated child, and I talked with the consoler and gave her some advice, and now Ani is calm and comfortable. I hope she naps and gets back some sleep. I feel so guilty for leaving town while she is at camp, but I think things will go better as they “learn Ani”.

How did Micah get like Ani?

Christy was telling that Micah was doing a sing-song sort of prayer the other night.
Kinda looking up with his eyes half-closed, fluttering, with this "over-emotive" sort of look on his face.
Singing: "Iiiiii loooooovvvveeee myyyyyy familyyyyyyyyyyy", waving his arms dramatically.

I can close my eyes, and perfectly picture Ani behaving EXACTLY this way. Micah has started to sing (better than Ani), and is very interested in the instruments that Christy and I play. We have this "March around the house" game we play, but before we start marching, Micah makes us all get instruments (percussion). It's so cool that he considers holding an instrument just a natural part of expressing yourself. I am so excited to watch him grow. He has such emotional depth, and so much to say.

Ani has touched so many...

I just found out, in a roundabout way, that Ani's pediatrician at Gillette "Has a special place in his heart for Ani". I've spoken with him many times, and he is a great guy, and a great doctor. He is an incredible "active listener". He fully believes that "Ani is in there", and he has complimented us on being a big art of her recovery.
We've gotten notes from Church and school on how they love Ani being with them.
I am humbled by how Ani has affected and enhanced people's lives. I am truly grateful for her. I am truly grateful to be able to tell her directly that I love her, and see her big smile. She is so much more than how she looks on the outside. I know that she'll continue to affect people throughout her life.
I really want to stay by her side and see how she changes this world.

If you could see inside me, my children.

My children, if you could see inside me, see just a part of my heart, you would understand.
My words are inadequate.
My songs are inadequate.
My hugs are inadequate.
If you could peek inside my heart, you would see the love and warmth there that would surprise you with its intensity.
You would never feel cold inside.
You would never feel alone.
You would never feel like nobody cares.
You are, in a way, an extension of my heart.
You take me with you wherever you go.
Having said that, it's not me that I want people to see when they meet you.
No, your own heart is what is apparent.
And I am immensely proud when your own inner warmth shows to others.
Proud to be a partner with you.

Enemies

I just heard a coworker talking to another coworker about the Boston bombing.
This man had fought in the Iraq (2nd) war.
He kept going on and on that that we have enemies that want to kill us.
He said that as much as the "liberal bumper stickers want to say otherwise", this is the reality of our situation.
That we need to remain vigilant.

Well.
That's all as may be, but I would like to interject a little rational thinking.
We currently have no idea who performed the bombing.
What purpose does it serve to even begin down a path like this?
It furthers only fear and hatred. What would he say if it was a domestic terrorist?
If a domestic terrorist, what if this person is conservative or liberal? Or just anti-government?
I'm not saying that we should lighten our search, or that feelings of anger are not to be expected...
I'm just saying vigilance can coexist with love. Vigilance does not require hatred or fear for fuel.

My last image of you.

Nate, what was my last image of you?
Did I see you after I shooed Ani toward Mommy?
I remember you at my right side, looking out the back window at Ani's swing set.
Wondering if it would need rebuilding again.
I remember you going around the other side of the couch when I went to the front window.
Why wasn't the couch against the wall? It was spring, no need for the fireplace anymore.
Why didn't you take the same way as me?
I saw it.
I yelled.
I shooed.
I turned around to get you...what then?
Within a second there was blackness.
Did I see you after I turned around?
Am I blocking the memory?
I remember blackness.
Blackness, rolling and tumbling like some evil waterfall.
I wish I had known to yell goodbye.
I hope you knew I was near you.
I hope you knew how much I loved, and still love you.
As complete as my life can ever become again here on Earth,
I can never achieve as much as I could have, were I still to be your father.

Nate's jammies...

Just last night, I got one of Nate's pajama tops from friends of ours that just discovered it. Christy didn't want to see it, but I did. I took it, and now it's in my picture box at work. I'm just wondering if anybody has a suggestion on what I should do with it. Anything creative from somebody?

Ani's wish

A few days ago, I was playing for Ani during bedtime, and I had my electric guitar, but it wasn't plugged in. I played close to Ani so she could hear the guitar, since it wasn't amped. I noticed that she seemed quite interested in me playing closer. After a few questions, I got the indication that she wanted me to play close to her. I did this last night, thinking that she was interested in seeing me play my guitar, but she wasn't. She spent most of the time looking into my eyes. It kinda made me make a few mistakes as I realized that she wanted ME closer, not my guitar. All this time I was telling her that every note I play and every note I sing says "I love you Ani", she wanted to tell me she loved me by looking into my eyes.

I'll be playing close to her from now on.

Dark stuff

Hey all, I know that I post some pretty heavy poems and stuff here. I'm not trying to bring anyone down, rather I'm trying to express them in a way to get the feelings out of me. Kinda like I'm expressing them to myself, putting them in the light of day and examining them. I can't stop the sadness, but I can look at it closely, acknowledge it when it surfaces, and take it out of me and put it on the page.

Thanks for mudding through all this with me.

In the time it takes to yell

In the time it takes to breathe,
my house is gone.
In the time it takes to yell "Nate!!!",
my son is gone.
In the time it takes to stand up,
my daughter is paralyzed.
In the time it takes to cry,
100 prayers are sent above.
In the time it takes to grieve,
well, anything, for I'll never stop grieving on this side of heaven.

Ani giggling

From Christy:

So, Ani was giggling to herself after I had put her to bed and as I was giving her meds. I said, "this is a weird question but is someone in this room with us?" and she raised her hand! I asked if there were angels in the room with us and she twitched her hand and then shook her eyes. I think I made a comment about whoever it is, are they telling jokes, what was so funny… and she giggled. After more meds, I asked again if there were angels in the room and she did not respond. Then I asked her if Nate-Nate was in the room and she raised her hands right away! I asked if she could see him - no response, or hear him - giggle giggle. Oh My!

Nate's hair

We just found out that there's a lock of Nate's hair that the Funeral Director kept, but forgot about.
We're probably going to take it back.
I know exactly what it will look like.
I know exactly what it would smell like.
After nearly 5 years, I know that hair so well.
I also know what it isn't.
It isn't Nate.
It's not a symbol.
It's an opportunity to honor him with a physical presence.
We'll put it behind a picture of him, and put our hair behind pictures next to his.
We'll kind of be together until we rejoin him, one by one, where he is now.


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Percy

Percy, why did you survive?
Percy, you are ever in front of me at work.
Reminding me of my precious son so far away from me.
I can't let you go.
Were you too small to be blown away?
How was Nate too big?
I was all of 12 feet away from him.
My arms are too short.
Too short to have kept him safe.
Too short to have held him to say goodbye.
Much, much too short to touch his hair now in heaven.
But, sadly, long enough to touch his casket.

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?

Micah's brother.

It feels normal to differentiate which brother I'm talking about to Ani.
It feels normal to tell Nate about his brother Micah.
It somehow feels odd to talk to Micah about "his brother".

I'm not going to stop.

I wasn't mentioned.

I don't know why, but I went quickly to the tornado date in Matt's blog. There was no mention of us. I felt disappointed. I have no idea why I would feel this way. I never knew of him until a couple days ago, why would he know of me? Emotions are strange.


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Just write

After reading Matt Logelin's blog, I kinda got inspired to write a little more of a daily diary, though I'm pretty sure I won't remember every day.
Christy and I were discussing grief yesterday, and how everybody's so different. For some reason, I seem to need the tears. I need to put myself back into all the pictures and movies, and just cry. Is it my need to be back in those simpler times?
I've been thinking lately about the mannerisms of some people's speech. Particularly in the area of familial relationships. I wonder why people want to use the terms like "step brother", or "step child", or even to explain that a child was adopted. That information is important in certain aspects, of course, but when I look at Micah, I see him with my heart. He is my son. Never mind that he doesn't share any of my genes, he is my son. I would rather people just leave out the "step", I would rather just know the basic relationship.
I can wish up down and sideways that the tornado hadn't happened, but I have to also admit that a lot of good things have happened out of the relationships formed since, and because of, the tornado.
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10 minutes

I don't know why, but I just googled the date of the tornado. I found the national weather report of the incident. It turns out that tht tornado only lasted ten minutes. Ten minutes. How can so much happen in just ten minutes.

Another's pain.

I've discovered a blog (www.mattlogelin.com), where a man is blogging after his wife died from a blood clot while still in the hospital after the birth of their first child, a girl. He has since written a book: "Two kisses for Maddie". I'm running through a lot of emotions and feelings that I haven't felt in a long time. I'm going to keep reading.

Feeling good again, now I'm scared.

The last time I thought my life was perfect, the tornado came. Now we have Micah, Ani is showing signs of small improvement, I'm feeling like this family is in a good place again. Why am I resisting this feeling? I know wasn't "cursed" or anything for feeling good before, why am I feeling anxious to feel happy or comfortable?


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This year's donation...

Some of you know our Christmas tradition, with respect to Nate. One of us (Christy and I) will buy an ornament, and the other will donate in Nate's name. This year it was my turn to donate. In the past, I have donated to the model train museum in St. Paul, and to a steam locomotive restoration project in the southeast. This year, I donated to KinderGartens, Ani and Nate's old daycare.

In my mind's eye, I remember greeting each child with "I'm so happy to see you!", and racing them to the door (I always lost). I know that I told my children that I loved them every day many times, and that they knew that. I just can't help wanting to have said one last "I love you" to Nate. It hurts my heart so much that he was alone, and I couldn't say goodbye.