Tuesday, July 29, 2014

On The Funny Bone

* I'll be writing about Ella's doctor appointment from last week tomorrow. It's a lot of information to filter through and process. Today I'm writing about Austin.

I didn't want to go. I'll start right there. Back at the beginning of the year, when I was in the midst of unplanned pregnancy/miscarriage drama, Calah from Barefoot and Pregnant wouldn't take excuses from me when she bought my ticket. "You're going to be ready for this break in July," she had said. That was back in the simpler time before the mystery illness crashed into our lives bringing frustration and loneliness with it.

"I don't play well with others." I tried to tell her in June. She shook it off and said then I could play badly with her.

As July 1st arrived, I stared at the word Edel on my calendar, and sighed. It was one more obligation on a pile of "too much." I read through the plans and saw that Friday night was set to begin with a cocktail party and crazy shoe contest. I handed my check card to my eldest daughter, told her my budget, and let her shop. A few days later, these arrived in the mail
Glittery cupcake shoes were enough to break a crack through my fog, a small one. Shoes meant a party, and a party means people. The extrovert in me clicked her heels for joy. People.

I've made no secret of my loneliness. Reeling from tragedy to tragedy for the past two and a half years has stripped away all but the most devoted friends and even family. I have the people who live in my house, plus one close friend left in Dallas. When you add in a parish that has been spectacularly unresponsive in helping or ministering to our needs, I'm in the midst of a desert. I ache for people and community, and the loneliness of here is almost as crippling as the recent tragedies.

In spite of my isolation, I didn't want to be around strangers. I'm still not playing well with others these days, and didn't want to have to be fake happy all weekend. My emotional responses can be off after the past few months, and I didn't want to cry in front of people who would judge me. My daughter wouldn't listen. She was a girl with a plan, and that plan included me.

Her BFF of five years has suddenly become much more than that to her, and she needed to get to San Antonio for a DTR (that's a define the relationship talk, y'all.) She could drop me in Austin and then drive the remaining two hours by herself. (If you've been reading me for a while, this is the same kid who asked my husband's permission to write to his daughter. We like him.) She'd be back on Sunday to pick me up. She had decided that I needed to go, and she was taking my means of escape.

This is them. Cute, right? She colored his hair blue. It's a long story.

I walked into the lobby of the Omni on Friday afternoon and exhaled. I silently prayed "Just help me to hold it together this weekend." I looked around, and my heart sank as I realized that I knew no one. 

Within five minutes I heard, "Shut up! You're Rebecca Frech! I love you!" and I was enveloped in a warm hug that left me breathless. It was a feeling I was to experience often during the weekend. I apologize to the women whose warmth overwhelmed me, and I broke down sobbing in their arms. The isolation has broken me over the past few months, and I was overcome to no longer be alone.

By the time Calah and I were dressing for that night's party, laughter had replaced tears and we giggled like college girls. We checked for VPL (visible panty lines) and fixed one wardrobe malfunction before heading down to the party.
Not bad for a couple of mommy bloggers


After the party, we ran up to our room, threw on pajamas, and ventured back down to the lobby to play Cards Against Humanity with the other slightly wrong, dirty minded, absolutely hilarious Catholic women. We shed our identities as wives and mothers at some point and were just ourselves... and the people we are are HILARIOUS! I kept finding myself wondering where these women had been my whole life. After years of thinking myself an anomaly, I had found my people at 2am in Austin.

Saturday afternoon, the CAH girls slipped into the back row of seats as the speaker sessions began. We snorted with laughter and giggled inappropriately, tweeted and texted, and played in that back row until the speaker took the mic. I can't tell you what she said, although the tears on the cheeks around me said that it must have been amazing. I couldn't hear her over the swirling in my own head. This was the living Church. This was the Body of Christ, and I was happily taking my place within it.

For a lot of years, I studied hard and tried to be smart enough to be part of the brain of the Body of Christ, and then I tried to be generous enough to belong in the heart. I admired those whose humility allowed them to be the feet which carry us, or the hard work of the hands who do the work, but knew I wasn't the hands or the feet. It was only after a weekend filled with karaoke, off-color jokes, squeeze-you-breathless hugs, and laughing until the mascara ran down our cheeks, that I have at last found my place upon the Body of Christ's funny bone. It's where I belong. The weird thing about that funny bone - it can make you laugh, but it's also the part of the elbow that you lean on when you pray.




Saturday, July 26, 2014

Hey Cathmom5!

You won Luca's book!!!!

I'm sorry it took so long to tell you, but Blogger decided not to publish two scheduled posts this week. You won't mind once you get the book though. It's worth the wait!

Please email me your address and I'll pop it in the mail to you.

Tuesday, July 22, 2014

Flawless

All morning, I've been thinking back to the girl I was in junior high and high school. I was a little bit hopeless. While my friends could execute the eleborately sculpted hairstyles of the 80s and 90s, and perfectly swipe on the latest make-up trends, I couldn't. I wanted to, but I always ended up looking as if I'd gotten ready in a very dark room. I would slide back to my comfortable default of tomboy, and hang out there.

As a young mom, my go-to look became either a naked face and simple ponytail, or the bare minimum of mascara and lipgloss. I wanted to look pulled together, but it was really a lot more work than I was willing to do. Which makes mornings like this amusing and a little sad to me. 

In the time since Ella's arthritis journey began, I've become an expert with a flat iron. I've learned more than I ever wanted to know about the nuances of eyeshadow, and have debated the merits of different mascara brands. My jewelry box overflows with accessories, a far cry from the few funky pieces I once owned and loved.

Part of my transformation is due to maturity and the influence of one very style savvy friend, but more so to the quest for credibility.

Two years ago in a rheumatologist's office, I realized that my intelligence is tied into the perfection of my eyeliner. The more put-together I look, the more seriously medical professionals take what I have to say. My naked face makes me invisible, while a full face of make-up makes me worthy of being heard. It's a game of perception.

Which means that I was up an extra hour early this morning. An extra dose of conditioner to make my hair shine, a fresh coat of laquer on my nails, and just the right amount of perfume are how I arm myself for battle. I take a few deep breaths and practice speaking in lower and slower tones than my usual rabid squirrel. I'm calm, cool, and in charge; and I have to sound that way. There can be no trace of my ADD this morning. Experts don't chatter in fast-forward.

Authority figures are perfection. That's what I've learned in the past two years.

If all the world is a stage, and we are merely players, I'm playing my part today. I've painted on the mask of rational and reasonable motherhood. I put on my visible intelligence along with my jewelry. I spritzed on confidence along with my perfume. It's an act, a carefully fashioned persona. It's ridiculous and maddening, and dead necessary.

One last check in the mirror, and a final tug at the shape wear that's smoothing out my imperfections. My two year old pats my leg and smiles up at me, "Pretty mama" comes from behind her paci. And I know I'm done.

The flawless image of calm perfection this morning is all part of a absurd game, but it's the most important one I'll ever play. I didn't make the rules, but I've  learned how to play by them, and I'm going to win.

Monday, July 21, 2014

You Made It Possible

A few weeks back, we picked up Ella's new-to-her wheelchair. It was functional and comfortable, but not really pretty. 

I took it to one of the local auto body shops, Detroit Custom & Collision in Sachse, and asked what they would charge to paint the frame. The owner shook his head and said "I'm not charging you for that. I don't know enough about them to take it apart, but if you can get the frame for me, I'll paint it any color she wants for free." (My Dr Who fan picked "Tardis blue.")

I took it home and looked it over. I'm not that knowledgeable about wheelchairs either, and wasn't sure I was up to tackling such a big job.

I was dropping off my husband' scar for service at Happy Motoring in Wylie, when I mentioned to him that I needed a wheelchair mechanic to take it apart...did he know of one?

"No, ma'am, but I'll do it for you."

I smiled and thanked him. I asked what that would run me. "Nothing," he told me, "I couldn't even think of charging you for that."

We dropped it off to be disassembled on Monday, took the frame to the painter on Tuesday, picked up the painted tubes on Thursday, and the reassembled chair on Saturday morning.

With the painted tubes

The guys responsible

The finished product 

A little extra something

I have you to thank for this. I know that this part was free, so I should be thanking the generous guys who gave their time and talent to this project, and we have. A lot! But I also have to thank you.

The generosity of my readers paid for the wheelchair insurance wouldn't cover, but it's more than that. You have taught me about the kindness of strangers, and their willingness to help. You have taught me to ask for help, and that's huge for me.

For a long time, I have worked hard to be strong and carry it all. In doing so, I was robbing other people of the joy of generosity. Thank you for teaching me that.


**If you live in this part of Texas and your car needs work, please give these guys a call. They do excellent work, and are really nice guys.

Wednesday, July 16, 2014

You Should Totally Buy Luca's Book (Giveaway!!!!)

Last year, I undertook an epic journey through Hell and Buffalo, Texas to see my college roommate. The beginning of this year, I flew to Virginia to see her again and celebrate her birthday. (One of the plane's engines died over Little Rock. Why can't it ever be an uneventful journey to see her?)

Look how cute we are!
She's a huge MasterChef fan, and an even bigger fan of Season 4's winner Luca Manfe, so she was beyond excited when her husband arranged to have Luca make dinner for her and a few friends. (He can make dinner for you too. Here's his website.)

I could write numerous blog posts about that dinner. The food was amazing. The setting was gorgeous. Luca was funny and charming. His beautiful wife, Cate, was incredibly kind, and at one point left me in awe with her delicate, respectful, quiet, and yet firm defense of her Christian faith. (Seriously, she blew me away. I want to be her when I grow up.)

But that's not the point of this post.

A few weeks ago, Luca released his new cookbook My Italian Kitchen. I sent him a Facebook message (yeah, we're "friends" now. I'm cool like that.) and asked how I could get an autographed copy to donate to a local JRA fundraiser. I wanted to buy it, I just wanted him to sign it. He told me "Don't be ridiculous. Let me send you one."

And he did!
http://www.amazon.com/dp/B00JU5H07M/ref=rdr_kindle_ext_tmb


I carefully glanced through it, and quickly decided that I needed one for myself. I got mine last week, and I'm in love. I'll admit up front that I'm not an Italian cook. My idea of Italian cooking is opening a jar of Prego. (Sorry, Luca!) I just wasn't raised that way. I can make all kind of Mexican food like a pro, but there weren't that many Italian cooks in small town South Texas.

I love this book. (Did I say that already?) It makes me able to pretend to know how to cook like this, and be able to convince other people that I can too. The genius of this book is in the writing (and in the recipes!) There are thousands of cook books out there, but this one is written as if Luca were standing in your kitchen and explaining it to you himself. It's friendly and easy-going, and takes most of the fear out of cooking Italian for me.

So far, I've made his basic pasta recipe (easy peasy!) and his steak with vanilla sauce (oh my holy goodness!) I don't know how many hours I've spent drooling over the food porn that is My Italian Kitchen, but it's a lot.

I decided that I couldn't keep this to myself, so I'm giving a copy away. Usually when I give away books, the publisher or the author gives me a promotional copy. Not this time. I didn't even ask. (He'd already given me one for the fundraiser anyway.) I like it so much that I'm buying the giveaway copy myself! (See? That's love right there.)

If you want to win one, leave me a comment and tell me why you love Luca (or better yet, why you're a Cate Manfe fan!), your favorite Italian dish, or what scares you about cooking Italian. You have from now until Friday at Midnight to enter. I'll pick a random winner on Saturday! 


Hooray!!!!! It's a cook book giveaway!!!

If you don't win, you should absolutely buy this book! It's worth it.

Also, go visit my friend Scottie's DIY website and see how she's so much more than a pretty face. She's a genius!!!

Saturday, July 12, 2014

This Is What Proof Looks Like

I didn't believe them when they said that her nerves were normal. Call it instinct or intuition, it doesn't matter. I knew that they were wrong. I knew that the diagnosis of a psychosomatic disorder went right in the face of everything I knew about my practical and pragmatic child. I just knew it was in her nerves.

And I'm right....at least in part.

Two nights ago, I was helping her out of the bath when I noticed that while her fingers had wrinkled, her toes were smooth. After 45 minutes under water, they had not a single crease.

Here it is, proof.


It's a positive sign of damage to her autonomic nervous system. It's a system no one has bothered to check, or even mention. (You're not really surprised, are you?) I don't know what it means for her other than now they have to listen. This is one of those things which can't be Conversion. The mind can't fake this.

I prayed for clear evidence, and now we have it. Irrefutable proof. 

In the short term, it means that the neurologist will be removing "Conversion Disorder" from the paperwork she sent to the insurance company. Lifting that label clears the way for genetic testing. Genetic testing means we should be able to figure out a name for this thing. A name leads to a plan of action.

We hope.


Tuesday, July 8, 2014

The Strangeness of the Internet - Turning on the Lights

The internet is a very weird place...thing...entity. I don't really know what it actually is, which seems strange to me considering how much time I have spent on it...in it...among it?

I remember so clearly the day that I started my blog. I was a very lonely stay-at-home homeschooling mom of four little kids. We lived in a neighborhood populated by mostly elderly people, and my children were the only kids for blocks. Every morning, my husband would leave for work, and I would sit in the silence of soul-crushing isolation. After months of being alone, an over-the-phone friend suggested that I should blog. I'd never read a blog before that day, and I didn't really understand the point of them. After scanning through a few of them, I decided that this new hobby might help to fill in a part of my day. 

That night, I discussed it with my I-love-my-privacy husband. He looked perplexed when he asked, "Why would you want to share our lives with complete strangers? It's not like they'll pay you for it. You're just inviting people we don't know into our lives, and for what?" The past few months, and especially the past few days, have finally answered him. 

We have been overwhelmed by the outpouring of love, support, prayers, and help from these strangers I invited into our lives seven years ago. Over the years, you have shared our grief and our joys. You've laughed at the goofiness of us, and cried with our heartbreaks. This past week, you went with us on the journey through this medical maze. In our worry and fatigue, I laid it before you, and you ran with it.

My beloved readers forwarded my blog to family members and friends. You harangued people you knew in high school, and the guy who once to you to the prom, to read over the medical history of a child you've never met. It didn't matter, because so many of you know her and love her, even if it's just through a computer screen. You pushed and nagged, and then began for us a tidal wave of responses.

We were wading through the plethora of comments when the emails started coming in. In all, twenty three doctors have written to me, offering opinions and advice. They've told me where to go from here, and which tests need to come before which others. They've told us where to look for answers, and who to ask those questions. We've emailed back and forth with specialists from all over the world, and learned much from their willingness to come to the aid of a little girl they don't know. They have reassured us, and praised our openness to the ideas and opinions of others. They have laughed at the daring of a mom who would ask the world to brainstorm a diagnosis, and been impressed by the responses we have received...and they had ideas. Lots of ideas.

We are beyond blessed. I don't know what that word would be, but we are miles and years beyond merely blessed. 

I have you to thank for all of it. 

Seven years ago, I waded out into this strange internet thing, not really knowing what it was. I had no way of knowing what I was doing when I began sharing our lives with a world-full of strangers. I didn't know then how much I would come to know and love many of you, or how attached you would become to us, and us to you. I didn't know that here, in our darkest moments, it would be you who would look for the switch to turn back on the lights.