Thursday, August 29, 2013


If you've never seen fog roll in over the Gulf, you are missing out on something special.
Millions of tiny bubbles of water collect to cover whatever they feel needs to be hidden, clouding the air above. Usually a storm has just passed and the fog is there to stay. Sometimes it's so thick, if you stand in it long enough, you can feel it move, like rain with no agreed upon direction.

This is where I am now. This dense fog.
It isn't eerie or frightening, but thick and uncertain. A beautiful thunderstorm has passed through complete with electric lightening and trembling thunder, but the ground is taken in what the rain had to offer and the fog has decided to come for a while.

It's hard for me to keep my mind clear as of late.
Where do I take my business, how do I make new friends, when will I feel at peace in my new post baby skin, do the girls need more structure, where do the lines of self awareness and self obsession meet and how do I keep from teetering on it... The thoughts ramble on and on. My heart is simply overflowing with business that refuses to cease. I think back to when I was fasting before Phoebe was born and am envious of my prayer life and concentration. I consider daily deactivating my facebook account because of the unwanted hours I pour into flipping through the screens of redundancy on my phone, but am wary of the attention and unwelcome comments it brings. But I also get words of truth, deep, life-giving truth that seem to balance out the rot.

So what do you do? How do you create a quiet space for your mind that enables the fog to clear focus on what matters? I know that in actual fog, a hot sun and a fierce wind can make it vanish before your eyes.

Lord, let your Son bring his heat, and support my discipline as a fierce wind

12 We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!
(the message "boo, hiss, let's all throw things")

1 Corinthians 13:12

Sunday, August 25, 2013

Home Is Wherever I'm With You

I was curled up with Eamon, a bit of his breath still warm in my lungs, his heart loudly beating in my ear on his chest. Phoebe was softly snoring in her nest under the window, the moonlight competing with building lamps for her attention. Sleep I desperatly needed came quickly. It was there, as my body relaxed and my eyelids dropped, I finally felt at home.

For weeks I've encouraged the notion that I am above my surroundings. But with a humbled heart, I've found myself alive in our new abode. The downsizing left us with only the most functional and beautiful of what we owned. The people that dwell in it are my most prized posessions. The words spoken here are life giving when we deny ourselves. Simplicity and Grace have been my two biggest motivators as a mother and wife. They also bring awareness to the ongoing changes of our little temporary home, and I am glad of it.

What God is doing here is important. Being present is imparitive, and I know that I am lacking there, but when Eamon shows me a deeper understanding of Christ's love, or when my heart is softened for a disobedient daughter, I am reminded once again to pay attention.

We are home again. Thank you, Father, you are faithful, indeed.

Friday, August 16, 2013

Systemic Mastocytosis

Many of my friends and regular readers know about the... trouble, for lack of a better word... We've had with Norah since she was about three months old.

She broke out in a rash that was at the time blamed on post partum hormones that were just out of control bc of my PPD.
After getting on an herbal supplement routine with little change, we started on a many month long ellimination diet trying to pin point what could be causing my baby's face to be oozing and bloody.
After about three months I stayed away from eggs, dairy and gluten.
There was a lit of improvement, but anytime I cheated on my diet or ate something unknowingly that even had trace amounts of one of these ingredients, Norah would be scratching for days.
We introduced foods at this time and over the next few weeks more and more things made her react. Red meat, soy, probiotics, chicken broth, EVEN BANANAS sent her body spiraling into a hive induced shock.
At this time I took her to a specialist who tested her for specific allergies and from that point on Norah and I both stayed away from those foods internally and externally.
I lost a ton of weight and Norah was doing night and day better. Unless there was a cross contamination issue, there were no hives. She habitually scratched (...well, sometimes) and that seemed to be a mental issue to me as I had been doing everything I knew to. And then some.

In that time I've been looked at sideways at birthday parties.
I've been asked repeatedly "Have you tried XYZ? It's really the only thing that works"
Norah's been given the "Poor BABY" pout and rub on the back... Or legs or arms or any visible roughed up skin more times than I can count.
Most people haven't even seen Norah in a full blown flare up in over a year, and yet, one woman even had the nerve to tell me "You always complain about her skin, but it doesn't seem like you do anything for her."

Meanwhile, I've gaurded everything she's touched, every bite she's eaten. I've stayed up endless nights holding down her hands as she fought me to scratch.
I've blamed myself for not following certain diets to the T like my peers preasured me to, knowing it would harm her.
I've cried with Eamon all night long wondering how we could be such shitty parents... Consider giving up our baby because of "food allergies"... How worthless could we be?
I had come to accept "This is our life, it won't get any better than this."

When we made the move this summer, her symptoms got worse.
Hives were constantly popping up especially if she got hot. It was also Partially because our friends and family were still learning about her allergies.
Her thighs and calves started to break open and bleed like her face used to. Going to the beach was a miracle cure, but only for a day or two. Certain foods started to make her throw up. And she began telling us that her legs "reawy reawy hurt, but not itchy".

Seeing Norah like this really worried our family and friends who haven't lived with Norah the past few years.
The questions and comments (all in love) made me dizzy with frustration. THIS IS HOW IT IS... This is Norah's itchy little life, just let it be, there's nothing more I can do.

One evening, I got the energy to research a condition one of Norah's doctors mentioned in passing.


I read all night long. Straight through when the sun came up. I was exhausted. My milk supply dropped, but this was my answer. I felt immediate confirmation from the Holy Spirit.

I began looking for doctors who.knew something about this rare, uncurable genetic mutation with only a few options. there was a doctor studying the condition at MD Anderson Cancer Research Center. After talking with him, I found out that he is only studying it as it pertains to adult lukemia patients and that he couldn't help us. But he was quick to reffer us to the pediatric wing of the National Instatute of Health in Maryland. The NAIAID is sponsering a case study specifically to gain knowledge about pediatric systemic (more severe than just confined to the skin) mastocytosis.

I had a long talk with the doctor running the study this afternoon. She thinks we are good candidates for the study and she'll be sending the paperwork to get us started on Monday.

Dear Jesus, THANK YOU, FATHER for answers. I am not weak, I am not incapable, there really is something wrong with my baby girl, Norah Jean. After the small shock of "My heart... My baby is sick... She has a rare, uncurable disease" I thanked Him for the answers. Finally, we are on our way to healing our sweet girl.

Within the next month or two we will take her to see the doctors in Maryland for hee initial tests. Their pediatrics wing is one of the best in the world, and her doctor seems compassionate and invested. She was affirming, kind, and informative.

It seems very... Surreal. Dramatic. Even dream-like to be where we are right now. But I think I'm ready.
Your prayers for our family as we start this adventure are appreciated. I believe we will find relief for Norah and I hope that in some way we can help other babies who may be suffering like she was/is.

Systemic Mastocytosis.
Systemic Mastocytosis.
Systemic Mastocytosis.

And mamas, be affirmed that God gave your baby to YOU. Never doubt that.

Thursday, August 15, 2013

Audience of One

A funny thing happened to me last year- I lost my voice.

Not from illness or injury, I guess mostly from lack of use, but suddenly the voice that I'd won competitions with, serenaded my hubby with, led worship with... Was gone.

I remember opening my mouth at our new church and the noises I wanted to make were not the noises that came out of my mouth. I was a little devistated.
I came home and tried singing along to the radio only to find the same story. My vocal chords strained finding new limitations in their range. I was unbelievably embarassed even though I was alone in my kitchen with Lily & Norah paying no attention.

Tonight we took the girls to Padre Island to escape the heat and the trappings of the little apartment (Norah can't go outside because she breaks out in hives once it's over about 90° which happens around 9 am ). I took some pictures, played in the sand, stripped Phoebe down, played in the water with everyone and watched the sun set behind the dunes.

Twilight set in, Lily & Norah continued to play with Eamon along the shore and a lightening storm danced across the sky to the north. I rinsed Phoebe off, swaddled her in a towel, popped up my beach chair and began nursing her as I soaked it all in.
In front of me, over the water, behind my family, the sky started turning the deep blue/black that it gets when fall is around the corner. The moon was vibrant and by the time the first stars started to wake, I began to praise Him. The funny thing about singing at the beach is that you usually feel like the waves are trying to compete with you, drown you out with their crashing and bubbling. The wind will carry your song far as if it's hiding it away.
But tonight, my Lord wanted to hear my broken voice. He hid my missed notes and cracked pitches from eavesdroppers by the waves and lifted up my song to His ears on the wind. I didn't realize that in the midst of moving, and business planning, and teaching, and cleaning that I hadn't spent sufficient time praising Him, let alone with wild abandon! Hadn't my voice been lost by the lack of using it?! My Love wanted to remind me of how He created me to worship Him. Salt air in my lungs, baby at my breast, sand in my toes. It was such a tender gift that was intended to serve as a reminder that I am created for Him.
My reigning audience of One.

(more on our new tiny apartment and homeschooling to come soon!)