I repeat this to myself several times a day. "I'm not crazy, I'm not crazy, I'm not crazy." There is definitely something wrong with my son. No, it's not colic, no it's not just acid reflux, yes, I've tried the swing/bouncy seat/elevating the bed/every trick in the book and there is still no improvement. I hear all kinds of advice, and I just smile and nod. My baby isn't just a normal fussy baby, something is wrong. Unfortunately, what we suspect the problem is will turn our lives upside down for the next 2-5 years. It's more serious than I want to think about, and my stomach does flips and somersaults, my chest and throat tighten, and my jaw clamps every time I read another mom's story or another article on this syndrome. FPIES-Food Protein Induced Entercolitis Sydrome. We have no diagnosis yet, as we are still waiting for doctor's appointments with specialists who deal with this syndrome. There is no cure. There is no test for it. It is a clinical diagnosis, and the only treatment is to eliminate the foods that cause the symptoms. You can find information about FPIES and the difference between chronic and acute symptoms HERE. Daniel is experiencing the chronic symptoms through my breastmilk. Due to his hypersensitivity to the food proteins that are already broken down through my body, we are not starting ANY solids until we have our numerous doctors' appointments over the next month or two.
I am afraid. I am afraid for my son's life. I am afraid I will lose my milk supply. I am afraid to feed him or myself because it hurts him. My human nature has taken over and I've forgotten that God is on my side. So I dive into His word and remind myself that God is on my side.
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
-Isaiah 41:10
and if I get tired of holding this fear in my heart, He'll give me rest
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
-Matthew 11:28-30
I wonder if God gave me this challenge as a way to pull me closer to Him. General statement here: Everyone always says the darker of a place you're in, the more you tend to rely on Him. Everything seemed to be cruising along almost effortlessly, and maybe I forgot during those easy times that God was the one making it effortless, so He wanted to remind me that I need Him. I have to not focus on the why's or the what if's, even though my heart and mind ask those questions often, and learn to trust that God knows the path ahead, and even if things get rough, He wants me, Daniel, and Jason to get through this.
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
-James 29:11
