So, then what?

(I'm working backwards here...I usually detail out her recent reactions to help myself work through it but the past one has taken such a toll on me that I can only find enough energy to write about the after effects...Full disclosure on previous anaphylactic reaction will happen when I've recovered.)

It's before the break of dawn on Wednesday, and she wakes from the discomfort of having diarrhea.  She's frantic and can't believe that she's crapped her pants.  She's mad, sad, embarrassed all rolled into one and she's also sorry and says so in her small voice.   Then the vomit begins and it's everywhere.  She can not control her bodily fluids so we are wiping her mouth and her tush almost simultaneously.  We tell her it's okay, that it's our job and pleasure to take care of her.  But it continues and we know we have to take her in.  We put our five year old in size 3 pullups because she still fits with her small 3 ft, 30 pound frame and begin the familiar route to Lutheran. 

Back from the hospital, she plays and drinks Gatorade and revels in the fact that it's her birthday today and she finally gets to have her "YES" day.  She asks to play and daddy plays.  She asks for Chick Fil A and she eats to her heart's content.  But this time she orders water instead of sprite...A very responsible choice yet we feel sad that she has to make that for herself...at the age of five...on her birthday.

By the time she reaches Toys R Us she is fast asleep, her small body still processing all the drugs, exhausted from the constant battle of fighting.

It is Thursday, and she's clingy in a way that is unlike her.  She attaches herself to my leg and refuses to let go when it is time for me to leave.  She inconsolable and I'm stoic, a shell of a person.  I am bankrupt of emotions and want to escape so I continue out the door.

It's Friday and I'm back.  I missed her.  She comes running at the sound of the door and I scoop her up and swing her around.  I sing her a love song and hold her close.  We laugh forgetting yesterday's tears.  It's time for us to go somewhere--an event we originally planned for her to attend, but now things are different.   We are scared to bring her out into the world of invisible terrors, food particles so miniscule they are overlooked by our wary eyes.  We discuss leaving her at home but her tears win us over.  We are in the car and she is excited to see her aunts and uncles but before long, she's nodding in and out of sleep.

We arrive and she is excited!  She races over and greets her people.  She chit-chats and takes pictures and asks 100 questions.  We sit down to eat but then, she wants to go home.  She knows herself and fatigue is setting in again.  We walk to the elevators only to RUN to the bathroom because she's going to have an accident.  We beg to cut the line and I sit her down.  The look of sheer relief that she hasn't soiled her pants spreads over her face and I realize that she would have been mortified had we been another second late.  I pick her up and she's fast asleep even before we get back to the car.

These are all the after effects of the anaphylactic reaction she had a few days prior.  We are always thankful, with deep seated gratitude, at the grace that is shown every time she beats another reaction but we rarely talk about what it takes to recover.  Her little body, at the bustling age of five, still remains the size of a three year old.  There's probably a lot that plays into that, genes being one of them, but it doesn't help that her system is riddled with steroids and other medicines that alter her rate of growth.  Sometimes the very thing that helps her also hinders her so badly.  As her mama, it's hard for me to look away when we give her these life saving drugs knowing that, one day, it might have an adverse affect on her.  This is when I am able to viscerally feel the weight of choosing between the lesser of two evils.  Ugh, it's heavy. 

At times I feel like maybe I need to go on meds because, you know, this life and death gamble is so intense and I'm afraid I'll completely lose it.  Like what if I'm waiting in line at Target and I decide that I need to have a good cry...in the middle of that line.  That's pretty socially unacceptable yet so incredibly possible.  And other times I have this immense fear of having to live my life without her and my heart feels like it's shriveling up.  Can medicine numb these feelings?  Do I even want the pain to go?

I don't know how I'll recover from watching my kid slip away from me but I have to somehow believe that things will get better.  Because she needs me to not run away and lose my faith.  She's counting on me to be strong, clear headed, loving and ever patient (which I'm not) and I need to be ready to fight to the death for her life.  She enters Kindergarten in a few weeks and I'm already drained from the push back we receive about her needs and I'm reminded how freaking lonely and scary this whole thing is.

But this week I was encouraged while listening to Klove on the way to work.  (Okay, that sounds really cliche.)  Anyway, I heard the most perfect song.  People ask how it's going and I say it's okay because that's better than the truth.  But this song captures what's going on inside and it's good to know that what I'm feeling is legit.

To Ava. Things Mama will say to you one day.

All of Me
By: Matt Hammitt

Afraid to love
Something that could break
Could I move on
If you were torn away

And I'm so close
To what I can't control
I can't give you half my heart
And pray He makes you whole

You're gonna have all of me
You're gonna have all of me
Cause you're worth every falling tear
You're worth facing any fear

You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me
Is where I'll start

I won't let sadness
Steal you from my arms
I won't let pain
Keep you from my heart
I dread the fear
Of all that I could lose
For every moment
I'll share with you

And Heaven brought you to this moment
It's too wonderful to speak
You're worth all of me
You're worth all of me

So let me recklessly love you
Even if I bleed
You're worth all of me
You're worth all of me

You're gonna have all of me
You're gonna have all of me
Cause you're worth every falling tear
You're worth facing any fear

You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me
Is where I'll start

Happy Life Day, My Love!

Dear My Love,

You love it when I call you that.  I could call you a hundred different silly nicknames that you think are pretty great but when you hear me call out "My Love" you freeze and look at me with your deep brown eyes.  It's almost like you know that you capture the very essence of a concept I've thought elusive for most of my life.

What is love?  Is it a feeling? An idea?  Is it a person? After all these years of life, I'm still not sure I can define it in concrete terms but I do know that you, A, at the tender young age of five are familiar with love.  You encapsulate it when you flash me a grin after I've told you some lame knock-knock joke for the umpteenth time.  Your droopy eyes emanate love even after you've seen me "done lose my mind" because I just had a break-down over a seemingly minimal moment such as you taking one millisecond too long to put on your shoes.  Your forgiveness demonstrates it in a profound way when you catch me eating ice cream that you can't have and that I can't give up because I'm more selfish than a two year old child.  The gentleness with which you try to hold your massive sister who weighs a slight 5 pounds less than you is love.  And certainly the way you throw your head back and laugh, savoring life and celebrating good things, shows that you know love.

That's what I'm learning from you as I begin to understand this thing called love.  It is a positive that far outweighs any negative that it could bring.  Love takes a chance and there's a lot at stake.  But, like you, I choose to love.  On your second birthday the doctors told us that your life would teeter and hang in the balance indefinitely.  This Wednesday marks your 5th year of life and my 5th year of loving with reckless abandon.  My love, here's to one more year, one more miracle, one more chance to show that love never fails.

With all that I have,
Mama