I'm emotionless but focused.

Im numb.

Im emotionless because I don’t know what to think. If I start processing everything in front of me, I will drown in sorrow. I can find myself in the deepest, dark hole by just sitting in the floor with my little girls playing, and not three minutes later, I have a baby screaming and hitting herself. If that doesn’t hit you with a flood of heartbreaking reality, I don’t know what does. The hardest part is fighting for help and getting a door slammed in my face. If this were for myself, I wouldn’t care and I would just move on.. but this is a non-verbal little girl that needs help! This is my daughter, and not at her expense will someone overlook a sick child! I know it happens all the time in the medical field, but not with my daughter it won’t.

People used to tell me, and I always heard, “Mother’s intuition knows best.” I never thought I had it. Honest. My mom does though. She called me once, late late one night worried, “Are you ok? Are you sure? How about the baby? Something isn’t right. I called your sister already and she said they are fine. Go check on Mady.” I laughed when I hung up the phone.. Mady was fine, she had been in bed for hours asleep and I was watching a movie. I sat for just another minute before I felt guilt that told me, ‘Ashley, go check on Mady. Listen to your mom.’. I went upstairs and found Mady shivering with a temperature thru the roof and her crib covered in vomit. HOLY CRAP MY MOTHER IS A FREAK! My own mother’s intuition on the other hand sucks. I would have went to bed and slept peacefully all night.

When Annabelle was born, I don’t know if I was in kinda the same mindset as I am now: shocked we were in the NICU – my baby was born too early – Im sad that my body failed her and kicked her out far too soon. Something just made me fight to help my daughter, but not emotionally curl her up in my arms and just ‘bond’. When I did start to do that several weeks later, something always felt wrong. I told AK many, many times – something isn’t right with Annabelle. I didn’t know what it was and I couldn’t put my finger on it. Something just never, ever felt warm, comforting and ‘okay’ about raising her. At only a couple weeks old, we began having several GI issues. We discovered the allergies and I stopped breastfeeding and we moved her to a Hypo-allergenic Formula. It was actually Elecare, the same as we are on now, except we’re using Elecare Jr. I kept trying to tell myself that I figured out what it was when we learned about the couple GI problems and allergies.. until she was a year old and we began new issues. For 9 months we battled various reactions to foods, substances, seasonal changes, etc. I tried my hardest to be patient with the slow treatment we were attempting with the allergist. I pushed hard to have the most ‘normal’ lifestyle for Annabelle. The harder I pushed for ‘normalcy’ the more sick she got. The more foods we allowed her to have, the more ill she became. Finally from January – March, Annabelle got sick and never recovered. We did three rounds of heavy prednisone, she took two antibiotics for two months without relief. Her weight was dropping, she wasn’t eating without choking and her immune system was spiraling out of control. That is when I finally lost myself in our GI’s office, early one morning and yelled at him to help her. A week later we had our first official diagnosis. Once those words were read off, I knew ‘normal’ was out of the question from this point further for my daughter.(What is normal by the way? Who the hell gets to decide what that definition is? We are making our own definition of normal in our house as each person and family should do the same. I give up expecting everyone should be just the same ‘normal’, no one is. I’ll be damned if I tell my kid she isn’t!) I’m now aiming to shoot for the best ‘Quality of Life’. I wasn’t finding the support and help for the mission I was on for Annabelle in Richmond so I moved her care to Norfolk. I didn’t want tubes started, I wanted my daughter to have birthday cake on her birthday! In March, I really felt as though I can relax as Annabelle’s mom. I have found her diagnosis that I have been looking for since she was born. I can now live life and enjoy her for who she is. As ‘different’ as our life became during those first few weeks, somehow I found peace in knowing that I have full control of her care and I understand 100% of what is happening inside her body and what I can do to help. Now, don’t get me wrong, I don’t know everything, hell I probably don’t know 10%, but I do have a flood of amazing resources, friends living with EoE and incredible doctors, that when I need help or Annabelle has issues, I at least know where to go and what to do. THAT I have control of. When I need answers, I know who to use. And that is comforting.

That feeling of control and relaxation was short lived. Within weeks of meeting our next GI Specialist and Allergist in Norfolk, Annabelle began this flood of curve balls. I am back to that feeling again, I guess we can call it “Mother’s Intuition”. I never really understood what that felt like, but I do now. It feels empty. It feels helpless but it comes with the mental equillivance of 50 RedBulls of motivation to fight. It comes with a sense of fearlessness. It feels like your heart is sinking in your stomach, but sitting in your throat and pounding out of your chest the entire time. It’s blinding, deafening – it makes you beg, fight for things when you can’t physically see, hear, or touch what you are feeling inside. It’s silent. Just like the good Lord that is giving me hope, motivation and direction. It’s so silent. It requires me to stop thinking and just ‘shut up!’ so I can refocus and hear what it’s tell me to do next. Two invisible, silent things are driving me – Mother’s Intuition and God. I never, in a million years would have guessed I would be using those two things to help my daughter get well, but they are my most trusting sources at this point. The only two things that haven’t failed me yet, and two of the most terrifying sources – that if I turn my head away, I may get derailed so quickly I lose control. Slow Down, Pay Attention, Refocus and Keep Moving.