After

What happens after?

Do you remember when you tasted something for the first time?

The equal mixture of excitement and apprehension?

That’s how I am feeling these days. 

Just when I thought things with our youngest couldn’t get any harder, they hit (what I hope is) rock bottom back in December 2020.  My husband and I were surviving on fumes- every night wondering if we should take our daughter to the hospital to find some magical cure for her nightmare flaring skin.  I was in the bathtub with her nightly at 2 am to help calm the itch and waking up at 7 a.m. to homeschool her three big sisters, thanks to the pandemic.  We knew we could not survive much longer. 

So we prayed.  We asked everyone we knew to pray and add her to their prayer list and we searched.  I spent hours and days and weeks and months researching and meeting with specialists of every kind from Virginia to Pennsylvania to Michigan and California to find any possible relief as we all, particularly she, continued to endure a living hell.  

We changed her diet, we had her relentlessly tested for multiple issues and within the last month, she has improved.  

But what happens after?

What happens once you emerge from trauma?

I’ve been waking up with Elizabeth every night for three years and even my pregnancy with her was ridden with weekly appointments due to concerns with her growth. 

How do I adapt to “normal”? 

I’ve been changing diapers for over 9 years nonstop and now she is potty training.  

What happens when I’m not?

Who am I now?

What taste is this?

Camille Vaughan Photography

Tooter

It began innocently enough. 

“Mommy, tell me a story.”

As a writer I realize this sounds unbelievable, but I always dreaded the day my child would ask me to make up a story on-the-spot.  Not because I didn’t want to, but because I never thought myself capable.  

I’m not sure I ever allowed myself to explore my imagination to those depths.  I’ve always envied those storytellers who were able to, so seemingly effortlessly. 

But my child was working through some hard feelings and I desperately wanted to pull through for her, so I leapt.  

The first character that came to mind was an old beat-up truck named “Tooter”.  I knew that name would make her laugh, and it did. 

Next, had to be a yellow convertible, Tooter’s wife Tulip.  Harper loves yellow and I could just see her wavy blonde hair blowing in the wind.  

And finally, Cooper (and later, his little sister Pinky), their son. 

Over the past year, we’ve woven an entire collection of Tooter stories together, taking turns filling in the blanks, covering every major moment of Harper’s life, particularly what is relative to that day: jealousy, joy, loss, fear, surprise, excitement, perseverance, truthfulness, goodness and more.  

“Mommy, tell me a Tooter story.” She pleads.  

Seconds after I’ve spent an hour lying on the floor of her youngest sister’s bedroom, in the final minutes of the day.  The moment I am more spent than any other in the last 24 hours and yet, I dig, scraping the depths of my reserves to pull through for this little girl, looking to me for answers and peace of mind before bedtime. 

Tooter’s family has become our medium of communication on topics that are too sensitive to discuss directly.  

And we are both better because of them.   

Skittles

“Nobody knows how the story ends

Live the day, doing what you can

This is only where it began

Nobody knows how the story ends.”

And so goes the life of our Elizabeth. 

Little Lizzie had 10 vials of blood taken last week.  She’s still severely allergic to dairy, egg and peanut and FPIES (Food Protein Induced Entercolitis Syndrome) to rice, sweet potato, avocado, quinoa and beef.  

We have avoided soy, corn and wheat out of utmost caution for her severe eczema. 

Until tonight-

When she tried a skittle (corn syrup). 

I’ve had four children. 

Eating a skittle has never been a bigger deal. 

She called her big sister, Harper, specifically, in to witness the event. 

And she still wouldn’t chew- only lick. 

This month Elizabeth turns three and our journey continues- likely with a lot of food therapy in our future. 

Acceptance of new tastes and textures- trusting the foods she has always avoided.  

“Nobody knows how the story ends

Live the day, doing what you can

This is only where it began

Nobody knows how the story ends.”

“Nobody Knows” by The Lumineers

Here We Go

She said, “I don’t want to grow up!”

And for the first time, she really meant it. 

Feeling the weight of the added responsibilities of being nine, she has decided that this whole aging thing: it’s not for her.  

I can’t say I blame her.  

I paused to behold her face; to mourn the loss of her rapidly-ending childhood innocence; simultaneously wondering just who this grown girl is going to become. 

“No one understands what it’s like to be me!” she lamented.  

Girlfriend, join the club.  

Welcome to the real world. 

It’s not for the faint of heart. 

And as much as I want to protect and shield her from it, I’m honored that I have the privilege to walk beside her as she learns to grapple with the truth of it all. 

Hold my hand, here we go!

Camille Vaughan Photography

To the Ends of the Earth

To the Ends of the Earth

I will go, for my child. 

We are tired and worn.  

But here’s the deal:

You either give up or you fight. 

Right?

You either accept status quo or you keep searching. 

And in the face of agony, we will continue searching until we find her relief. 

I texted my friends the other night and exclaimed, “I will call Kanye West!  I will call Brad Pitt!”

Not that they can do anything specifically for Elizabeth but that they are considered inaccessible.  

Not for me. 

We are tired and worn. 

But to the ends of the Earth I will go for my child. 

To the ends of the Earth. 

Live

First, it’s a bump.  A setback. A hinderance. 

Then, quite suddenly, a demand for attention. 

We explore options.  We’re optimistic. 

Sure, we stumble, but who doesn’t? 

And then, 

it’s different. 

It’s not a challenge to overcome anymore. 

It’s a new way of life. 

One we never asked for, nor wanted. 

We’re faced with a Dead End. 

Or, are we?

We stop.  We cry.  We lament. 

Then we retrace our steps and get our asses back on the 

Right. Damn. Track. 

Because when faced with a dead end, 

Other than dying, 

What are we supposed to do?

Live. 

We live. 

Camille Vaughan Photography

Forced Meditation

Here I am. 

Lying on the floor. 

Next to my daughter’s bed. 

A reminder of my failure to get her to sleep on her own like her three big sisters. 

Have I become a statistic?  The youngest gets whatever they want?

Or perhaps I am just too tired to fight. 

Ha- let’s not play ignorance- they are likely one in the same. 

I am tired and she was born to fight out of necessity. 

So, here we are. 

Prisoners in our own way. 

Dependent on one another. 

I remember convincing him that if he agreed to the fourth, she would be “mine”. 

I took full responsibility, although he would never agree to anything but equal, which made me love him even more. 

And yet, here I am.  Lying next to her bed and as much as he has literally and physically attempted to take my place, there is no substitute for her of me. 

I lie next to her and think, how I can make the most of this quiet time?

Unfortunately, it is forced, which is not a lovely place to be when you are trying to meditate. 

So some days, I sleep.  Others, I seethe in resentment of being on my 16th hour of parenting while he lounges on the couch.  

And sometimes, I think, one day, I’ll miss this. 

They won’t let me in their room. 

Their room won’t be here. 

I lie and wait.  For that heavy breathing. 

I leave, relieved, both for that she breathes and that I have the chance to catch my own. 

Camille Vaughan Photography

Push.

Here she is.  My eldest.  Refusing to look at me as I encourage her to put the book down and get back in the ocean.  The ocean with yes, fish.  The fish she fishes for.  The fish she eats.  The fish she sees at the aquarium.  The fish she has become suddenly fearful from touching her.  

I get it.  It’s unusual.  It’s unique.  But it’s not a reason to sit on the sidelines. 

So, I push. 

No treats the rest of the day unless you get back in. 

You don’t have to go for long, but you have to get back in. 

Tears. Exasperation. Begging. 

In she goes. 

You can’t see me having fun, she says.

Oh, but I can. For the next five hours straight.  FIVE HOURS in the ocean. 

No one prepares you for that in parenting. When to push, when to hold.  

My husband didn’t want to make a fuss, but I wanted to make a point. 

Our fears are not the end. 

Yes, we must listen, but we also must know when to overcome. 

And boy, did she overcome. 

In spite of my insecurity – was I being too hard?- I realized, yes, I listened to my instinct and momma knows best. 

This was a time to Push.