Allergic living is not without its challenges, but we have a choice. We can choose if we will let the challenges overwhelm our lives, or accept that sometimes we may have to live life a little differently, though with no less joy or exuberance. Is your glass half full or half empty?
As guest author Nicole West, and mother of Kylo (of Kylo's Goals on YouTube & IG) writes, "We may not be able to change our situation, but we are in control of how we perceive it." Read and take heart from her family's journey down the garden path with atopic disease, then EoE.
Our journey down the garden path — the beginning
We were the parents that were fortunate enough to figure out our child’s allergies within the first year of his life. After battling hive-like rashes while breastfeeding, infected eczema, and numerous contact reactions, our allergist finally confirmed our suspicions — Kylo had multiple food (milk, egg, peanut, and tree nut) and environmental allergies, too.
We were new to the food allergy world; my husband and I didn't have any severe allergies, nor did anyone in our families. As new parents, we were fearful, though we remained (and remain) ever hopeful for Kylo’s beautiful future!
Years passed and we adapted to our lives as food allergy parents. We continue to educate and advocate for Kylo's safety and inclusion. Over time, we figured out that many of our family and friends and our community wanted to help, even if they were not exactly sure how to help.
A couple years after his food allergy diagnosis, Kylo began having significant stomach pain that would randomly come and go. We attributed it to cross contact with his allergens, and sometimes, it was cross contact. But often, it was not. It was a confusing time for us because Kylo could not always explain what he was feeling. Perhaps this pain was there all along. We don't know.
The more verbal Kylo became about his stomach pain, the more we discussed it with his doctor and allergist. His playtime would be interrupted with debilitating pain and many nights he’d wake up crying in discomfort. It was heartbreaking to watch and convinced us that something beyond food allergies was going on.
His allergist tested him for celiac disease and the bloodwork came back positive. We quickly scheduled an endoscopy to confirm the diagnosis. We wanted clarity and answers we could work with to help him.
Following the endoscopy, while Kylo was still in recovery, the doctor told us something we never expected. “I’m almost certain Kylo has EoE,” she explained. Pathology results from the biopsies confirmed her suspicion. I had heard of EoE (eosinophilic esophagitis) but never thought it would be something my child would have. This was some of the hardest news we have received as parents.
After a period of sorrow, that even still tries to take hold sometimes, we regrouped and were ready to tackle the diagnosis.
While we have tried several elimination diets, to date, we have not been able to identify Kylo’s EoE food triggers. He is currently on swallowed steroids — a choice we didn’t take lightly — to give him relief from the inflammation and symptoms of the disease. While we are thankful for this 'band-aid', we plan on doing more food eliminations in the future. EoE doesn’t go away, so we want to do everything we can to figure out what will help him long-term.
I know there are many people who have traveled a similar path, and some who’ve experienced far worse, but I’m here to tell you, it doesn’t always have to be a dark place. Even on the toughest days, we have incredible gratitude and there is light! We have gratitude for life’s little moments and the beauty we find in being parents.
I stumbled upon a quote about embracing the way your child is blooming, even if it is not in the garden you imagined (Jenn Soehnlin). The quote didn’t fit my exact feelings, but the words in it resonated.
Finding joy and being grateful
Kylo was and is blooming into a thoughtful, charming, kind, funny, and smart kid. Although I didn’t pick the garden and some of the things in this garden, Kylo was and continues to be growing handsomely. Life can be both beautiful and painful simultaneously. We try not to let some of the things in this garden get us down. We get back up more than we fall, and we try to find joy, even on the difficult days. We end our days praying with a grateful heart and with appreciation of our many blessings.
We may not be able to change our situation, but we are in control of how we perceive it.
The importance of goals
We also spend a lot of time focusing on the things that we can do, and we set goals. Goals motivate us and give us direction. Some days we may only take one step forward, but we can always look back and see how far we’ve come.
Kylo sets many short-term goals, like learning to jump into a pool (he recently achieved this!) and some long-term goals, like becoming an NFL player and being a famous YouTuber. After several years of talking about it, this year we started his YouTube channel. After some back and forth with channel name choices, we settled on ‘Kylo’s Goals.'
Since launching the channel, we’ve done several shout-outs to children with EoE and food allergies. We want kids to know they are not alone and that there are other kids living through this not-so-fun stuff. We want to inspire kids, motivate them, and even provide a fun distraction during the tough times. We’ve enjoyed featuring travel, adventure, games, sports, and even just typical day-to-day activities.
We have a ton of fun working on this together, but are by no means experts. We learn as we go. We often hang out in Kylo’s bed at night editing and talking about current and future content. We are grateful for the simple in life — a ‘Like’ on a video, or new Follower/Subscriber. These small gestures make such an impact. They are helping Kylo reach his first YouTube goal of 1,000 subscribers which will allow him to be in YouTube’s Opal Club. We also started an Instagram to share reels of fun and encouragement. We'd be grateful if you'd follow us on YouTube and Instagram.
Recently, Kylo and I were interviewed by our local news, and could not have been more thrilled to share some of the fun we’ve been working on..
I’d like to leave you with these thoughts…
● Find joy in the garden you’ve been given,
● Set goals rooted in your child’s interests and abilities,
● Remember that the simplest of acts can nurture the soil, and
● Don't forget to be present and watch your child bloom!
“Embrace the unique way your child is blooming — even if it's not in the garden you imagined.”
—Jenn Soehnlin, Author & mother
About the Author: To be quite honest, I’m often an overwhelmed mama, but I am entirely filled with gratitude. My faith, family, and friends water my garden. I have two charming boys and an indescribably supportive husband.
Images: Courtesy of Nicole West