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.

Mastocytosis.

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.

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!)

"I'm So Glad We Met"

My senior year of high school this woman was my partner crime. We had lofty dreams of running a underground bohemian magazine, doodled and wrote only to impress ourselves, and rocked the "au natural" hair in a sea of straighteners. She was even one of my bridesmaids.And somehow, five years have passed since I've seen her sweet face. A reunion was most definitely called for.

So good to see you again, Emily <3