Yesterday made me think too much

On the drive to the hospital yesterday to meet Ani, I was forced to think about stuff I didn't want to think about. With no information about Ani other than respiratory "distress", I was forced (by my stupid subconscious) to think about losing Ani. Certainly before the tornado, I never thought about losing my children, and since then, I've thought about having lost Nate, and lost my "Ani 1.0", but never about fully losing Ani or Micah. My heart is so conflicted.  I'm ok with where Ani is _going_ after she dies.  I am CERTAIN about her faith, so her ultimate destination is ok with me. What I'm NOT ok with is her leaving me. Quoting Mr. Incredible, "I'm not strong enough". I pour myself out to her, I am as vulnerable with her as no one else. What would I do?  I would continue to be daddy and husband. Would it be too much for me to lose that avenue of service to my child?  To say "I love you" to the heavens for another child?  My best friend already does that. Could I?  I believe God would show up to be the strength that I do not have in myself, but if I'm honest, I don't want that to happen. 

Strangely, the day befor Ani went into the hospital, I was thinking of posts to put here to be read to Micah and Ani after _I_ am gone..

Oh how small a world...

I finally was able to get Ani into a "peer group" of middle-schoolers at their events on Wednesday nights.
She's in with a small group with about 10 other girls that are mostly her age or a couple years older.
I was able to convince the church pastors that I didn't need somebody to be Ani's caregiver, since I was there for that...
What I wanted was for her to have FRIENDS. Friends that weren't Daddy, friends that might be talking about things that she's only thinking about.
Friends that might help her feel included.
Well, I am SO PLEASED that a group was found, they had actually discussed Ani's need at an executive meeting at church, and I rolled her into her group last evening.
Then after the events, one of Ani's new friends sat down with me and told her that her Dad was the one that gave Ani CPR initially.
What a twist of life. The girl immediately texted her Dad, and now there's this connection.

Ani finds ways to impress

As part of Micah's pre-bedtime ritual, he is to kiss Ani good-night. I've been trying to get him to also say "Good-night Ani, I love you". Last night, as I was asking him to come over and tell her that statement, she raised her hands for "Yes". As Micah was still messing around and did not see that, I told him what she had done. Essentially she had agreed that she wanted to hear that, and that she too loved him. Such a simple gesture and facial expression say so much. I told him what she had tried to convey, and he said his good-night after that.

Also, during Sunday's sermon on trusting God more, our pastor was discussing how sometimes when complexity comes up in his life, his first reaction is to try to control everything, not necessarily pray about it first. While he was explaining this, Ani got this curious expression and smile on her face and gave a little interesting giggle. I took it to say "Yeah, how's that working out for you? Doesn't work too well for me".

Ani, you are amazing.

Does God "read my blog"?

"Lay your burdens at the feet of the Lord".
Am I doing that just by writing here?
When I'm writing, should I be praying at the same time so "it counts"?
Certainly I do pray anyway, but I guess it would be nice to think that it counts double when I write about it too.

Edit:Additional comment

After I wrote this, I changed my mind a little about my second statement above about laying my burdens just by writing stuff here. God knows my heart, and knows what troubles me. Just that isn't enough. I need to make an effort to _trust_ and actually try to "give up the worry" about certain things, and only then will I actually lay my burdens down. I guess I re-evaluated what "burdens" might be...I'm not called to lay down my duties or responsibilities, but I _am_ called to let go of the pain/worry/angst that they cause me. Just like true forgiveness, it does take some work or effort to do this.

Wow, what a kind of “double life” I lead.
Just last night I was celebrating Ani’s perfectly normal giggle and laugh to me making fun of “My Little Pony”, and telling her how impressed I was with her attempts to speak (she was _REALLY_ trying). I was still thinking about those actions this morning when I heard Stephen Curtis Chapman’s “Cinderella”, and I immediately switched into how much I have lost, how much Ani has lost, and I completely forgot about her accomplishments last night.

On edge.

Sometimes I feel so lost.
Just 6.5 years ago, I would have predicted a completely different situation.
Now I'm left to wonder what Nate would have been like.
I wonder how different Ani would be?
I wonder if we would have gotten Micah?
I wonder where and who I'm supposed to be?
My mind swirls with details, like my work, Ani's meds, Ani's condition, how to parent Micah correctly,
my violin studies, Ani's med refills, me being sick for over a month, money, Christy's parents, etc.
I swear that I'm on edge all the time waiting for my cell phone to buzz, that Micah got kicked out again,
nobody's at home to get Ani off of the bus, lots of things.
My anxiety level is maybe the highest I can remember it being.
Lord, please give me the discernment to let the things go that are taken care of.
Give me confidence at work, we will get through the struggles.
Give me healing to overcome this lengthy illness which weakens me in all aspects of my life.
Give me talent and chutzpah to play the violin the way I want to, and not be timid.
Give me help from others to manage the day-to-day medication stuff, so I don't stress about it.
Give me peace in my thoughts, to drown out all of the "What if?!?" noise that's so often there.
Give me guidance and your infinite love, to pass down to Christy, Ani and Micah, so I am who I need to be for them.
Give me your forgiveness, so I can forgive myself for my failings, and try not to repeat them.

My daughter used to hug me too,

without me needing to position her arms. 

She used to idly twirl her fingers in my hair,

how I long for that seemingly meaningless touch. 

She described a world around her that I had 

stopped seeing a long time ago. 

What I wouldn't give to argue with her over what

she was going to wear. 

But, oh, would I have said "I love you" as often as I do now?

I wage a secret war...

I have to constantly watch the refill status of Ani's medications. Things like refills not going through because the pharmacy has like 3 different prescriptions because her dosage has changed, and they've tried to refill the wrong one. Her lamictal medication is really nasty because you can't just stop it, you might get a "fatal rash" if you change dosage (to zero too) too quickly. It's draining to be on the phone for 3 days before that particular medication runs out, because I know that something bad will happen if I don't refill it. Eventually it was refilled, but only just before she ran out. I wish there were a better way to manage all this and not have so much stress.

Can I let go someday?

Ani, will there be a time when I don't need to be vigilant on your medication refills?
When I don't have to bug the pharmacy for the refill because if you don't get the correct dose you might get a "fatal rash"?
Can I ever stop mentally measuring your awareness? Your seizures?
When can I stop worrying that you might just up and leave me suddenly?
When can I stop feeling guilty that I've got so much of my love invested in you that I might not give enough to Micah and Mommy?
Can I ever stop trying to make sure that others see you as a fully important person, not just a lump in a chair?
Will I get to stop reminding people that you understand what's being said, and to be polite around you?
I will never blame you for any of these feelings, you are a source of strength to me.

Will I ever stop the fear I get by mentally putting myself in your condition?

Show me Micah's path

Lord, where is Micah going?  What path is he on?  Where should my guidance lead him?  My heart is as heavy as any time in my life when I hear someone from his daycare say that she's afraid that he might be a danger to others and himself. Where do I find my influence in this behavior?  I don't punch or hit or kick or spit or throw things. Where was I absent in parenting that allowed him to get here?  I am so confused because he is totally normal around me. But whatever influence I may have with him is forgotten when he's not around me. He claims he's not afraid of me, but obeys because he loves me. Where is my failure?  How do I improve?  If this is his own "demon", how do I help him defeat it?

Help me. 

Just one time, please?

Nate,
I cry for your presence, and I don't see you.
I yell to see you, and you're not here.
My heart aches to tell you I love you.
And then I realize there are many Dads doing the same thing as I.
For children lost far too soon.
God, could you just one time let me see a crowd of children around me?
Children happy to be in Heaven?
It would make earth a little bit easier to put up with.

Again

Here we are again Ani.  

You about to go under the knife. 

Which helps you. 

Which hurts you. 

What do you think of me?

Your smile stays with me. 

Don't be scared. 

I am with you, praying. 

God is with you, He knows what you've been through. 

He is strong even when you and I can't be. 

Don't think my tears are from worry about this. 

I cry even when you're feeling fine. 

My heart and head are in constant battle. 

It's logical that to heal, sometimes you have to hurt. 

But that doesn't stop my heart from arguing that hurting you isn't keeping you safe. 

I remember your room

Ani, I remember your room. 

Up the stairs when you could still climb. 

Tall bookcases we tried to keep you off of. 

A little stair step to your bed that his special dolls that were impossible to get the clothes on. 

A closet that held lovely dresses. 

Lovely dresses that were all you wanted to wear. 

A place where "dark hug" was sacred. 

A place were you were sacred, and safe, so I thought. 

Do I remember enough of your room Ani?

Thanks, during stress

Lord, thank you. 

Even in my times of great stress, I must remember to thank you for the many gifts in my life. 

First and foremost, thank you for your son's sacrifice for me. 

Thank you for my wife.

Thank you for my children, even the short time we had Nate, his life helps shape us to this day. 

Thank you for the strength and peace you've given Christy and I to keep getting through each day after the accident. 

Thank you for my family and friends and the strength they give me. 

Thank you for my musical ability. 

Thank you for my brain. 

Thank you for the wonderful balance between being an artist and scientist you gave me. 

Thank you for my current job. It's very rewarding, and I work with varied and wonderful people. 

Back to school

Let me start this post with this: I pray for all children going back to school.

Having said this, it's difficult, in my soul, to see the pictures on Facebook of all the kids going back to school. All of them full of smiles, wearing their new backpacks. Nobody has to be sorry about posting the pictures.

I remember Ani's first day, as I cried while wheeling her to the special bus. I watched as the lift took her up, and the attendant Knowing that she wouldn't be able to speak to new friends, or play on the playground.
I'll never remember Nate's first day at school, he'll never have it.
Ever since Ani was born, I've been looking forward to questions from my children like "Why is the sky blue?", "Why is the Sun yellow?", "What are the stars?", and I only got a couple like that from Ani. Certainly I'll get these questions from Micah, and to be sure, I've already told Ani the answers. I ache, because even at 2.5 years old, I knew Nate was going to be a lot like me, and I'll never get to answer his questions.

Hard week.

It's been a hard week, and I don't know why. I keep thinking about Nate, and specifically his funeral. I found a list of comments on his obituary that I had never seen before. There are 18 pages of them, and I read them all at least once. As a parent, I know how much our children influence everything about us, but it's amazing to see how your child might affect so many around them. Maybe it's hard because it's back to school week, and I keep thinking about how I shouldn't have ever had to take Ani to school in a wheelchair, or talk about her to the special needs teacher. I don't know. It would be nice to not feel sad a lot.

Why does this happen?

I was out at lunch today when I saw an infant boy in his baby carrier.
From out of nowhere, the image of Nate in his casket came to mind and would't go away.
I looked at the baby's hair, and the feeling came to mind of when I touched Nate's hair in his casket.
I couldn't cry.
I wanted to, but couldn't, it makes it really hard on those around me.
I pushed it away, until it came back on the drive home.
Oh, it came back.

My life, as reflected in the violin

I am now in my second year of violin lessons. Only now am I starting to "feel the violin" in my right hand, holding the bow.
Through this journey, I've seen my life, I've seen my Christianity, my spirituality. I've written before about "Dump the icky, strive for the beauty".

After the first 3 months, I nearly gave up. I had no faith. Upon confessing this to my teacher, she showed me such grace that I'm not sure I deserved it. She stayed with me all along, only "pointing out the small sins" (my description, not her's) in my technique. Guiding me along with just practicing in lessons (kind of like only being a "Christian in church") until now, when I look forward to practicing and it fills something in me, and I think about the violin a lot throughout the day. In all things, pray. I've prayed for playing the violin better. I _am_ better now. I know my Creator is with me. When I'm mad, when I'm sad, when I feel guilty, when my own voice in my head says you'll never get better, my Heavenly Teacher is there with me, guiding me along.

I've gotten angry with the violin. What sense is that?
I've gotten frustrated with the violin, with myself, but after confessing it to myself, I go back the next day and I've overcome my hurdle.
I've played with tension in my neck, no use.
I've played with tension in my shoulder, no use.
I've played using my head.
I've played using my heart.
Only through a relaxed attitude, listening to all parts of me, does the violin sing sweetly.
Maybe God wants us to see the fractured facets of our soul that sin has caused. The jewel that God gave us in the life that we have, the breath that we take, is ours to heal or destroy. I think that we should be looking at every aspect of ourselves, every broken piece that needs fixing. Then we open ourselves up to Jesus and let his sacrifice be the glue that bring all the shards of our soul back together again so that it sings sweetly to God.

Why do you love me?

Ani, why do you love me? I haven't cured you, I don't spend every waking moment with you.
Why do you forgive me? After what I let happen to you? After having yelled at you during the year of pain?
Why do you brighten at my touch? I'm sinful, I'm imperfect, I don't deserve you.
Why are you spiritual? You have every reason to hate God, yet you said yes and were baptized?
How is it that we keep each other going? I can't do it by myself, you pull more than your own weight.
Ani, even though I question myself, my love for you is eternal and unwavering.
You are amazing, heroic, and simply beautiful.
I love being your dad.

Life is too short to hold back

From expressing your emotions.
Too short to not tell your parents how much you appreciate them.
Too short to lie, emotionally, to your children. Admit when you're scared, but brave enough to do something anyway.
Too short to just let your spouse "be at your side". Tell them that they _are_ your side, you would be unbalanced without them.
Too short to notice beauty all around you.
In people, their actions, their strengths, even their weaknesses.
In the world, the colors, smells and music of a rainstorm.
In yourself, try to humbly see the beauty of the only person that is you.
Too short to not jump in a puddle.
Too short to not through your head back and laugh, deeply, when joy is felt.
Too short to not encourage each other to be brave in struggles, for _all_ struggles are difficult. There are no "absolute measures" of struggles.
Too short to not stop once in a while, look inside, see what you see, and decide if part of you must be discarded.
Too short to not stop once in a while, look up, search for a purpose, and follow it with your heart.
Too short to not give a high-five to your coworkers, no matter the measure of victory.

Too short to not look for a life beyond this one.

A candle in the sky

A candle was lit about 8 years ago. 

It shown so brightly. 

I remember the warmth, the way it lit my path. 

I remember feeding the flame, hoping I would guide its growth. 

Alas, the candle no longer burns where I can see it directly. 

When I want to find it, I have to look inside. 

I find that I no longer have to feed it, that it's already in a place of light and warmth. 

Its flicker catches my attention every day, and I ponder. 

I do my assigned work and duty, and do not fear the time that is coming.

The time when my light joins his and His. 

The time when there are no shadows to confuse me. 

The time when I will never fear getting burned. 

The time when my tears will never threaten to put out my own flame. 

The time without end. 

Ease my heart and help me remember what is lasting

I just ran across Ani's 5th grade class photo. The first thing that came to mind was: "What's my daughter doing in a wheelchair in front of the class with a nothing look on her face?". Please, Lord, please help my subconscious stop doing that to me. I do _not_ feel that way. The way I feel is that my daughter is one of the strongest people I know. Going through stuff that would crush me, and never let me smile, much less sing along. My heart is with her victories. My heart is with how far she has come. My heart is with her perseverance, her stubbornness to stay close to _my_ heart.

Heart to heart, Lord, I think that's how you want us to be with each other. Not by judging our outside looks, or our temporary mistakes or missteps.

A revelation on joy

I remember back just after the tornado, when I described to my pastor, how deep inside me I felt this big connection to Jesus? I was thinking about that when our pastor was speaking Sunday about joy and Paul in prison. I remember that time after the tornado that while I felt Jesus with me, I couldn't laugh. Not just the giggle or funny laugh, but the big, deep down laugh that makes you look up to the sky and you feel it throughout your soul. Today I just realized that those laughs come from the same place inside me where the connection to Jesus lives. The real laugh of joy comes from there. I know that now, and will try to remember that from now on. I hope I can relate this revelation to others in times of grief or great stress. A laugh _that_ deep should always remind you of your relationship with Christ. I have been able to laugh like that whenever Ani had even a minor victory. We know that we would never have made it through this without Christ, and now I know another way he keeps us going in times of great difficulty.

How do I get "through this"?

Whatever "this" is, I'm getting through it; We're getting through it.
Not by any measure of "strength" that I have, but through others.
My faith.
My wife.
My daughter.
My son.
My friends.
How do I not collapse every time I see Ani?
I have hope, and I have her.
Every time she looks at me with the "I love you, daddy" eyes.
Every time that she is happy when I think I would give up.
Every time she laughs. Every. Single. Time.
I won't give up on her, and won't let her give up on herself.
In return, she doesn't give up on me.
It is truly my privilege (and difficult job, to be sure) to care for her.
I can celebrate her victories.
I can shake off the bumps along the way.
Because she does.
She's the hero, the brave one, and I might get more strength from her than I give to her.

Then and now.

I'm at church, singing now. 

I was at church singing 6 years ago. 

We put a little boy in daycare today. 

6 years ago we did the same for a different little boy. 

We skipped out then, all hand-in-hand. 

A girl who still walked and talked. 

A boy who still lived. 

Clueless parents. 

Happy and unaware.

We ate lunch, had naps. 

And then that life turned into this life.

This life is so different, I don't even know how to compare the two. 

It's likely not even useful or healthy to even try.  Even so, as I am by Ani's side as she faces her challenges, and I can't help but think of the difference in the direction her life would have taken.

How much of my inner pain and frustration goes to Micah?  Too much probably. 

Who are you now?

As much as I could know you at 2 1/2, I knew you Nate.
I knew you, I loved you, I could guess what you would want to eat.
After 6 years off this earth, who are you?
I can barely keep up with who Ani is inside, and I see her every day.
I can just never wrap my head around the fact that a whole person is gone.
A whole person that stars in hundreds of pictures in my library.
A whole person that stars in my heart so prominently.
A whole person who waits patiently, bathed in the love and praise of God in Heaven.
I'm sure I will know who you are, recognize you as my son, but who will you be?
Maybe that;s not even a valid question, I don't know.

Not because of me

Not because of me should you fault God. 

Not because of others should you fault God. 

Not because of yourself should you fault God. 

For God loved the whole world,

He sent his love TO our world. 

For nothing can separate us from God. 

"The rules" cannot,

"Religeon" cannot,

My sins cannot,

Your sins cannot,

Doubts, questions and your past cannot,

No earthly voice can change your status. 

Improvements!!

Ani's eyes have been working dramatically better in the last few days!  It's obvious that her brain is actively trying to calibrate them again. 

Also, she's done a couple of very normal head shakes for "no".

Parts of me everywhere.

I fractured that day.
In many ways I am no longer whole.
Of me that remains here on earth, pieces are everywhere.
My sadness lives in Withrow cemetery, loud enough for me to hear wherever I go.
My appreciation of a simple sunset lives in Ani, silenced, and whispers to me of its return.
My regret lives in Hugo, where simple decisions were made monumental.
My mischievousness lives strong in Micah, reminding me of myself, Ani and Nate.
My faith and duty lives strong within me, pushing my feet in front of each other.
When I die, I'll leave my sadness in Withrow, with my body, and finally know true peach elsewhere, dancing forever.

Quickest roller coaster ever

I've got to tell you what happens to me when I see other children around me. 

Before I was a father, children were almost unseen. It's not like I didn't care at all, but I didn't have a huge heart for them. 

After I became a father, everything changed. Every baby was an example of the fingertip of God. Every pregnant woman became beautiful. I pray quick prayers for both. My smile on the outside was only a pale imitation of the hint God gave me of his love for them. 

After I became a parent of a lost child...a terribly hurt child, it changed. I still had that great feeling, but then it is like the peak of a roller coaster, you're going to hit the bottom soon. At the bottom, I can feel the pain of:  "I wish my daughter could speak or move", "I wish my son were still here so I could smell his hair again". Depending on how much the child reminds me of Nate or Ani will make the intensity of the low point easier or harder. I guess it doesn't happen with every child, or with kids I've gotten to know, but there is one that seems to get me all the time. My great nephew Ben. Seeing Emily's son is always very hard, since he and Nate were born so close together. I am somewhat ashamed at the way I can't control my reaction. 

I hope, on the outside at least, that my smile continues through the bottom of the roller coaster when I see some babies. 

A tear for Nate

A tear for Nate.
It's not just crying.
It's not just sadness or loss.
It's shame and guilt.
It's being flawed.
What could I have done?
More so, what can I do now?
Nothing.
I will try and let my self-condemnation fall to the ground.
With my sadness and pain.
Maybe someday only my faith, love and memories will remain.

Who would I have been?

Sometimes I can't help but ponder these questions...
If the outcome had only been Ani being hurt, and Nate still being here, who would I be now?
If the outcome had only been Nate passing, who would I be now?
Would Micah had come our way if not for the tornado?
Are there "other Jerrys" in parallel universes who have different situations?
Would I recognize any of them as me?

Sleep

Sleep, Ani, sleep.
I've always got your medicines ready.
Rest, gather your strength.
There's no responsibilities for you to worry about.
Heal, incorporate your successes from yesterday.
I'll always notice your victories.
Wake when you're ready.
I'll be at your side.
I'll carry you through the day.
I'll keep you under my wing.
Part of me is always watching over you.

Confusion

There are times when a part of me scolds the other parts of me for living my life, having fun. Why am I not totally sacrificial?  I know I need to feed myself too, grow, learn. My ongoing grief drags me under water. I feel guilty sometimes for "daring to take time to learn Violin".  

It's not fair.

It's not fair. Just saying. 

I see the homework emails from Ani's teacher...I want to be doing these with Ani. She can't write a book report or do research. Oh God, we are just trying to get a good "Yes/No" indication from her. 

It's not fair. I want it to be different. 

Ok. I'm done, had to get that out. 

Could you hear me?

Could you hear me?

Was I with you as you slipped away from us?

I can still feel what it was like to yell for my missing child. 

Straining as if yelling for you could drag you closer to me. 

The constricting cloud of uncertainty clenching my heart. 

Even now, maybe I'm still yelling for you. 

Maybe my soul is still straining to drag you near to me.

Can you hear me?

God, as always, send my words to my son. 

I win.

Last night, as I sang and played to Ani, I stopped and talked to her. 

I told her that I thought I was blessed to serve her, and blessed to be able to play for her, as she obviously enjoys it. 

I was in the middle of telling her that I thank God for my talents to play/sing for her and she raised her hands for "Yes". 

I laughed, then stopped and said "Wait, YOU thank God for me and my singing??"  

She raised her hands for "Yes". 

I said "Seriously, you thank God for me??"

She raised her hands and smiled big!

So, I win.

I'm still gonna keep playing though...I might win some more. :)

I wish you could see Ani through my eyes.

I wish you could see the Ani that I'm blessed to see throughout the week.
I don't get to see all of her all the time, only pieces shine through the veil once in a while.
I see the Ani that sings with me, and adds a vocalization in exactly the right spot in songs.
I see the Ani whose eyes say "I love you".
I see the Ani whose mouth tries to say "I love you", but can't.
I see the Ani who responds "Yes" before I can even finish the question; "Do you want me to cuddle with you on the couch?".
I see the Ani who has so many different smiles, Joy, Happiness, Mirth, Love.
I see the Ani who loves to have her feet rubbed.
I see the Ani who more-or-less rolls her eyes at her 3 year old brother.
I see the Ani whose eyes light up when her brother kisses her goodnight.
I see the Ani who has a spirit perhaps stronger than my own.
I see the Ani who loves when I finish playing a song by closing it with a G-major chord.
I see the Ani who enjoyed solid food by mouth so much, but now we can't do it anymore.
I see the Ani who still loves Disney princesses.
I see the Ani that still resides within.

You never know what will hit me.

Just found out last night that somebody in our small group went to Nate's funeral. It hit me as such a display of honor to Nate, that I was kind of speechless. I know that so many people went, more than I will ever know. Apart from the sadness of the day, the feeling of Nate's impact, of the honor that people were giving Nate sticks with me, and always will. I'll never forget leaving Church to an honor guard and a bag piper. Who was Nate to everybody?  What impact did Nate have on you, directly or as a result of his loss?  I'll never know the scope of this, it's too massive for little me to think about.