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.