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Hey Miss Mae

San Antonio Relaxed Family Photography & Intimate Weddings
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Living Water

Mae Czarnecki March 26, 2014

Two years ago we brought both of the girls to Rockport for Norah's first trip to the beach. She was just over a year old and was as itchy as ever.
The first day we went to the beach, Norah sat in the cool water and giggled and squirmed. This was new for her and she loved it. She had rarely been in a pool because harsh water conditions and bacteria posed a serious threat to her skin, but this she loved. Admittedly, I was worried about the toxicity of the water (being the Gulf of Mexico and all), but (despite many accusations of just keeping her away from "fun things" for my own benefit) I was willing to let her try it out at least once. The patches on her skin turned bright red as she played and I held my breath. We all were amazed as tiny little minnows came up to her legs and ate off the dead skin- and she let them! As we packed up to leave I prepared myself to come home to The Itchy Kid, having left Happy Smiley Beach Baby back on the shore.



What we found was just the opposite. The salt water had taken away all irritation. The patches were no longer raised or inflamed, her skin was (for the first time in her life!) somewhat smooth, and she seemed to momentarily forget that she was usually in pain and cheerfully played the rest of the day. When Norah has a bad reaction to something, we often stick her in a bath with some Epsom salt and essential oils with minor results so this was huge.
We rearranged our entire trip to get her in the water as much as possible that weekend. We even considered bottling up the ocean and bringing it back with us to Fort Worth, but knew the stagnate, contained conditions would spoil the water.

Fast forward to a year later when we moved to Rockport.
One of the (very few) things we were excited about getting our tiny lady out to the beach as much as possible. We couldn't apply sunscreen to her skin because everything we found triggered histamine release (this year we will be using coconut oil and carrot seed oil!) so we went to the beach at sunset and let Norah play every few days. Being in homes that were full of things that make her sick was very, very rough on her little system, but the salt water still worked magic for her.

Fall, then winter came and went. Though the weather was mild, it was still too chilly to get in the water.

But spring is here. The water is warming, the sun is out.

A few weeks ago we took the girls out for their Nature Study Day. Since the fishing was supposed to be good, we headed to the beach. The water was still chilly, but not so unbearable as to keep you from ankle wading. We ventured under the pier looking for hermit crabs, identified wildflowers, and dug a few holes. Then Norah got brave and waded out to a sandbar. The sand was soft that day and her little chubby body sunk fast with each step. I watched her patiently, expecting her to need me to catch her from falling at any moment. But then, she remembered.

She dug her plump fingers into the wet sand and began rubbing them on her legs saying "Mama! It feels so good on me 'kin!" and I won't pretend that I didn't cry.

Jesus scooped me up in that moment proclaiming His sovereignty as the Living Water.
I know that I often get caught up in thinking about the woman at the well and imagining babies in third world countries dying of thirst, but this time, I understood His picture of living water so much more. See, the chlorinated, harsh water that dumps from our tap can visibly clean Norah, but it does little to heal her. Christ is like this salt water. Teeming life that not only washes away our filth, but deeply refreshes our spirit and heals our wounds! Salvation has brought me this flowing gift, and today I am grateful for it.



Happy Humpday, Y'all!

In Beach, mastocytosis, Personal
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Systemic Mastocytosis

Mae Czarnecki August 16, 2013

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.

In mastocytosis, Personal
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