1 in 200,000

I spent way too much time trying to find the actual statistic. Let’s just say it’s rare enough and so specific that no one knows. So let’s go with 1 in 200,000. Let’s say that this is so rare that you probably don’t know anyone else with it. Rare, but for us real. For us it is no longer uncommon. When we found out there were only 263 registered cases in the world, it did not lessen the magnitude of shock in our home.

Our daughter is so much more than her diagnosis. But because of her diagnosis, life is made sweeter. Every small, but giant, step we take together is measured by not the length of the step or the time it took to get there; but rather that it is even happening at all.

Merosin Deficient Muscular Dystrophy.

Phew, the four word cuss word.

MDC1A. CMD. LAMA2.

What does it mean? It means Elliot’s successes are just that more precious and meaningful. It means that she requires us to see the joy in odd nooks and crannies. She has allowed us the privilege of slowing down to join her in her world through her perspective.

The nitty gritty: It means that she will have to work harder, try longer, and be braver than anyone I know. And I get to be her mom for that. I GET TO. I am allowed the honor of doing life with her.

Some day she may read this. And what I want her to know that to me, she is undefinable. To me she is immeasurable, unstatistic-able, she is rare because she is wonderful. She is 1 in 1,000,000. She is ours. And that is all I need to know.

Sparks + Swift = The Parkers

Taylor Swift has written a lot of hits…but nothing tops this Swifty chapter one:

It was 2003. Fall break had just started for my freshman year in high school. Per the usual, I tagged along with my older sister, twin brother and her friends after school to wherever they were going. I felt like a rockstar…hanging out with seniors. As we sat in Boston Market and ordered sides, because we were too cheap to spend our allowance on actual protein, I landed myself right next to this handsome 17 year old in a yellow soccer jersey. He poked fun that I was eating mac and cheese. Who orders just mac and cheese? I distinctly remember this moment. It was as if time froze this snapshot and saved it so that I could look back and enjoy it for many more decades. It was the beginning of our story. Our first chapter.

Now let me give you some context. This particular 17 year old was way out of my league. He was practically college bound, played football, was friends with everyone. I, on the other hand, weighed 100 pounds soaking wet, thought academics were life, loved marching band, and thought someday, maybe, crimped hair will come back if I just try hard enough. I watched him play football from the pep band stands and day dreamed.

I wish I could reach back into that memory for so many reasons. I wish I could tell her to stop experimenting with 70’s hair and to please please PLEASE not perm her hair in 3 years despite how daring she is. It makes your hair unruly in college…and girl, you’re going to have braces then too. Bless it.

I wish I could tell her to stop trying to find any boy that will listen to her and make her feel heard and important. To take time to know that she is important as a stand-alone creation. To not place her value in what someone thinks about her. Stop trying to prove yourself, sweet girl. You. Are. Enough. You are a work in progress, don’t I know it, but enough all the same.

Mostly, I wish I could have told her that the chapter of love she is desperately trying to find is going to be one for the ages. It is going to be such a precious surprise no one but God saw it coming.

So let’s see where was I? Bell bottoms shouldn’t be a thing, you should NOT get Kelly Clarkson highlights, your parents are right you need to fix that front tooth gap…ah yes high school.

So 14 year old Caitlin goes on to be an uber nerd who achieves academic status that no one cares about now that we are adults. That 17 year old goes on to college, plays lacrosse, excels at his own nerdiness level. They both kiss frogs, but alas no royal wedding.

She is devastated by fixer-uppers that she can’t improve. Because, let’s face it ladies, a fixer-upper is not the healthiest choice. She was heartbroken by the one she thought would be it…but sweet innocent girl, you weren’t ready to support him in the amazing spiritual journey he was headed down.

She went to college. Go Tar Heels!

He graduated. He had his heart shattered.

She studied international law abroad for fun (nerd).

She came home.

He came home.

Enter Nicholas Sparks chapter two:

They collided briefly. 14 year old Caitlin was trying to rip out of my chest, press on nails and flute in hand. Nothing more than a delighted dream for her and an opportunity to be nice for him.

He was haunted by the previous breakup and looking for a mission. See, what she doesn’t know yet is that he is a man of missions. He finds something to make the world better and he does it. Just like that. There is no contemplation or maybe-later or poor them. Only 10 out of 10, jump in the deep end, wild love. Sometimes he is knee deep before he realizes what he agreed to…this is one of those times.

She was dating someone at the time. What a dumpster fire that relationship was. This is the last time she will ever let someone treat her like dirt. She will learn to think of herself as valuable and worth respect. For what it’s worth 20 year old Caitlin, I am proud of how you handled this catastrophic mess in the end.

She got sick. Really. Really sick.

He showed up. 

He stayed.

31 days. Coma. Tracheostomy. Central lines. Ventilators. Monitors. End of life conversations. Therapy. Debridement. Skin and hair gone. Bandages. Muscles waste. Blindness. Vocal cord damage. Waking up. Learning to walk. Feeding herself. Talking. Seeing. Peeing by herself. Showering by herself. Discharged.

She will get her phone back during the hospitalization and will have voicemails. Tons. From him. He checked on her every Sunday. Left a message. This will be before she can save them, sorry. She will start calling him, even though everything in her says she is ugly and no one will want to be around her. He will call her back. He will find out in his own ways that she is devastated that her body won’t do what it used to. That she can hardly walk without almost blacking out. That she used to be a yoga fanatic who worked out every day. He will train for a half marathon and call her after each workout to tell her how well they both are doing.  She will find out this half marathon is the final chapter of closure in his previous relationship and it will make her soul sink into the floor.

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She came home.

20 year old Caitlin. Stevens-Johnson survivor. Reality check. You have no hair, hardly any skin, you are on medical leave for the semester. You need rest. What do you do? You get a full time nanny job for twins. TWINS. Girl. What are you thinking? That family will go on to be SO wonderful to you while you get back on your feet. And that mama of those twins will tell you that you have met THE ONE. And you will hope she is right.

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He showed up.

He stayed.

When she got home from the hospital he was there. He remembered what she asked for when he visited over a month ago at CMC Pineville. He will bring a pineapple for a picnic and an umbrella because she cannot be in the sun. You will cut that pineapple with him. You will go on to do this at all your major life events as a symbol of that first time. Of when he heard you. Of how he listened.

JanNo automatic alt text available.uary 2010 rolls around and you are both better for having known each other. It will snow something strange for that time of year. Ask him to go on a walk. Be brave. Tell him that people come into your life at certain stages to be something for you. To mold you, inspire you, hurt you. That he was here when you were your most vulnerable in your entire life. He fed you at your bedside. He watched you walk for the first time. He heard you. And you can show him nothing more devastating than almost dying. If he disappears when you go back to college that you will remember him dearly. But if he follows…what a journey it could be.

Radio silence. Two weeks. And then. At your college dorm front door.

He showed up.

He stayed.

Chapter three…for the sake of consistency let’s say this is the union of gushy romance novels and a lyrical high school musing.

She graduates. She gets her DREAM JOB. She came home.

He was terrified of putting down roots. But as they accidentally fell in love, the ground was rolling with fresh unearthing like a tide of forestry. Roots were everywhere. You will be 23 when he asks.

She wore white. He wore black.

He showed up.

They went home.

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Our love story is one of the greatest gifts I have received in my life. I will spend the rest of my life attempting to pour into my husband the same way he patiently and graciously pours into me.

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Hiding in plain sight

Our love story started with its own dose of adventure. So how did I think things would be any different in the coming years? We were designed for this. We were groomed for this. We weren’t ready for this. But if we could just hide in plain sight a little longer…

I packed up my wigs and my body healed while he put my heart back together. We fell in love on complete accidental purpose. We married, we built a home, we grew together in plain sight.

Plagued with the possibility of never being able to have children, despite the odds, we found ourselves pregnant. The pregnancy was filled with a myriad of possible terrors. And as she grew inside me, she hid in plain sight…

She burst into life and she teaches us daily what heavy love truly is. And if only we could have hid in plain sight.

It is time to step into the light in hopes of embracing someone else who might find solace in our story. It’s a little funny, it’s a little sad, but it is wholly and fully ours.

This world could use a little more honesty about doing hard life full of adventure and gallons of grace. So here is to standing in broad daylight. To being unabashed, coming barefaced into the morning. To making our story tangible. To giving words to our pain and a legacy to our joy.

To standing out and living in plain sight.

Sometimes the best hiding place is the one that’s in plain sight

– Stephenie Meyer