A Parent's Perspective

When our doctor first mumbled the words, Eosinophilic Esophagitis, I literally gasped/laughed/choked out loud and said, "Excuse me? Repeat that one more time, and goodness write it down before I leave!" He looked at me like I had three heads, but I wasn't kidding. 11 syllables in two words is too much for my country educated self to handle!! 

When I left the office that day, I had to call AK right away and tell him the two things we were considering this could be. I was happy to read off "Celiac Disease" but the other one, I just started mumbling sounds and stopped myself and began describing "It looks like an allergy but it's not an allergy.. It reacts to food.. I know it has something to do with the esophagus - yes, google stuff about the esophagus with a huge name!" 

We got home that evening and both began researching until our eyes bled. I found a website called Kids with Food Allergies and one of the first things that I posted was; "How in the world do you even pronounce this?!" They all laughed WITH me and welcomed me with open arms.

It's been a short road (but feels like a lifetime) since that day when I first heard the words that sounded so foreign. I now spill it off as if it's a part of my everyday vocabulary, and many days, it is. I've learned more than I could ever wish to learn - the more I read and understand about the disease, the more terrifying and heartbreaking it becomes.

Here's the thing. My baby girl looks so healthy on the outside, but inside, she is a mess. Even when in remission, she will still be suffering from a chronic disease. Those living with EoE suffer from constant painful digestion, stomach aches, painful swallowing foods, muscle aches and overall fatigue. Annabelle shows many signs of these on a regular basis, some days are good and some are terrible, it comes in waves. She has also been diagnosed with 'low tone', which essentially means she has low muscle tone in many areas of her body due to the malnutrition for such an extended period of time during development. There are days upon days of fussiness, screaming and crying fits, unable to fall asleep, vomiting and simply not normal toddler behavior where you can clearly tell she is hurting in pain - but she cannot communicate to us what is wrong. It is beyond heartbreaking to be the parent and unable to soothe or help our baby suffering.

The hardest thing for AK and I to hear and face everyday are people's constant criticism over our daughter's condition and whether or not she is sick, despite her bubbly smile on the outside. The fact is, when all you know about Eosinophilic Esophagitis is a high-level amount of knowledge, and then you see our sweet little girl, it IS easy to judge. But please be mindful that AK and I are NOT educated only on a high level. We understand the best case scenario's and worst case scenario's very well and face those realities everyday. We have been BLESSED to meet people (not even a handful, Im talking 2 people!) that are also suffering this nightmare here in Richmond, VA. When we speak with our new friends over our children's condition, it's incredible to learn that we all have the same fears and dreams for our babies. We're all equally terrified and we all face the same criticism, it becomes very isolating. We just want our babies to get better, we're praying for a cure.

If you've ever had a child wake up in the middle of the night crying their eyes out and throwing up, you wipe their sweet face and promise them that they will feel better soon, get some rest and it will go away as soon as the medicine kicks in.. We can't do that. Instead we wake up to the same crying child, covered in vomit with drooping sad eyes and ours tear up just as fast. We wipe their face and kiss them on the forehead and say "I am so sorry baby. I am so sorry - I will do whatever I can to make it better. I love you". And that's where we are. AK and I have spent almost every single night up with Annabelle screaming at 2am and we have promised her since she was born that "I will do whatever I can to make it better", we have a diagnosis and we are honoring that promise, that promise to our child that does not deserve to feel the way she does, that we will help provide her relief. 

All that to also say, Annabelle is a rockstar. She is strong, happy, full of life and smiles, she is hard-headed and feisty but she is also our little miracle-surprise. We have no doubts that she will not succeed beautifully in life and never allow EoE to define who she is and what she dreams to become. She will never be treated any differently in our home or at the playground. She will earn a time-out just as fast as the next kid.. but she may also get an extra wink or two when we attend birthday parties and she cannot eat the cake. Annabelle is a great little sister and a blessing to have as a daughter. We hope you see the same in her and hope you continue to support our efforts to getting our daughter healthy. Join us on the days when we make great strides and have opportunities to celebrate, but also on the days we take two steps back and ask for a few extra prayers. Thank you all for being her biggest fans :)

Annabelle does not deserve this disease. Our family has done nothing to ask for this nightmare in our home. But one thing Annabelle DOES deserve are the parents that God has created us to become for these sweet little girls.

Until my last breath, I will fight every day to find the best care and doctors for Annabelle. I will take strides thru life grateful for the health and things we do have and will continue building the warm, inviting, laughter-filled, loving home we enjoy making our favorite memories in.

Love Always,

Ashley and AK