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.

Dear Daughters

Dear Daughters,

This summer was completely unexpected. The Littlest Lady was born into our family with much excitement. Only days after her arrival our family was promised a new life in Rockport. Away from our friends, but back to our family. Your daddy would be able to go back to school, and I would be able to have the help of your Grandma & Aunts. The house we were promised fell through and we were left with our hands in the air, not knowing what to do next. We lived with your Grandma for a month after living with your uncle for a month. Our hearts were hurt and we only had each other to lean on.

But you, my sweet girls, have shown me the faults in my heart.

You have lived this summer as if it was the greatest. Your bellies were full every night, and you played til you couldn't keep your eyes open. We ate burritos and sipped "coffee bubbles" (sparkling water) at sunset on the beach as many times as possible. You played naked in the sprinklers til the sea breeze got too cold on your booties. You got cuddles and kisses that your family has waited years to shower you with.

You have nothing to complain about- and neither do I.

We are starting over, here, in Rockport. Daddy is now a cabinet maker. Lily starts Pre-K at home this year. Norah has a possible diagnosis for her skin condition. Phoebe is a boob addict and is in blissful baby heaven 24/7. And Mama is refocused.

Having three little ladies who will one day be women, and hopefully mommies under foot keeps me on my toes. While we were without a home this summer, my priorities were put in place. It is not important that I maintain the largest portfolio of breastfeeding women. The pride that I had in "normalizing breastfeeding" through my work became unbearable. It isn't even in line with my mission statement. You girls reminded me of what my calling is and it has nothing to do with competing with others.

My job is to lead you to Jesus. To show you the beauty of  His world through my love. My parenting. My friendship. And this love I have for you, it overflows into my passion of photography. These moments in motherhood that are knit together by kisses, laughter, heartache, and joy- they are what fuels my creative being. The moments I have caught of you in secret while you explore, love, and learn are ones that I will forever cherish. I want to provide that for my clients.

This summer you have inspired me to step up my game- at home and behind my lens. I will not aim to book the most shoots. I will not book a shoot just for the sake of a few extra bucks that really just keeps me from you. My portfolio is built. It is solid. And the only time I will spend away from you will be spent capturing what you have inspired in me.

With all my love, Mama <3

What does this mean for my clients? The mini sessions I have in Austin & DFW in September are a go! I will be able to see some of my very favorite mamas who got me where I am today and meet some new moms and babes along the way. But with homeschooling and traveling for Norah's testing there will be very limited monthly availability (only one or two sessions a month in South Texas.) I will continue to mentor online during naptime and after bedtime. I love teaching and this has been one of the most rewarding things I've done all year! I will begin booking births after sweet Phoebe is a year old. This is by no means a  "good-bye" or "see ya later." This is a "let's do this". I am ready to give you the best of me in order to capture what is most important to you.

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.