Life is Complicated When Your Child has an Invisible Illness

Jacqueline Royael essays

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“Oh look at this little cutie! Mom, we are going to give him a little something to calm him down before the anesthesia. Ok?” a sweet familiar nurse in teddy bear scrubs explained.

“While of course that’s great that you noticed how cute my child is, but please knock him out cold.” I said to myself shaking my weary head and smiled.  

We arrived at the hospital that morning before the sun was up. Parker, our sweet baby boy, slept soundly for the hour long drive unaware how today would change his life forever. After months of being sick, failing to thrive or better known as a ‘giant slap in the face to any parent whose job it is make their child thrive.’ His first Easter was celebrated in the hospital with the flu (after the flu shot!) and we were anxious for answers to the questions that lingered deep in the nervous parental part of our minds. The part that says, “We just knew something was wrong.”

We walked down the long dark hallways, as hospital staff passed quickly by trudging into their windowless and sterile units. My son bounced in his dad’s arms, smiling at each passerby. I found solace in my son’s smile and I think the nurses did as well.

“Once we are ready mom, you can carry him back if you want. Just put on these scrubs before you go back to the operating room.”

The operating room? I thought this was a simple endoscopy! Why am I signing something about breathing tubes and why are all of these nurses calling me mom?

Parker’s soft wispy brown hair fell into his eyes, as he examined his hospital gown. He played contently with his Dad, laughing as he pretended to try it on this tiny baby robe. I shuffled to sign papers and answered questions that should have been easy but in this moment, I felt as if someone was speaking to me in Chinese.

“His birth date is April 4, 2012 and he is allergic to everything, but mostly eggs.”

All of 13 months old and he could captivate any room. The nurses were playing peek-a-boo, the ladies at the desk were throwing stickers at him and even the doctor gave an approving wink as he batted his long eyelashes and smiled.

He was oblivious to the pain. This made me feel okay, as I carried his light and sleepy body back to a room of faceless medical staff. I was reassured by the kindness in their eyes and the soft words of a nurse who whispered to me “It’s okay mom. We will take care of him.” I had never met these eyes, but I believed her. Perhaps because in this moment of fear, as my son laid on a hospital bed with tubes on his face and in his arms, I had no choice but to hold onto this belief.

Life is complicated when your child is sick.

“Wait, what does he have?” We are often asked this question as we unpack his Parker friendly lunch at a birthday party or clean up his vomit from the dinner table.

I always get stuck with this simple question. Why is my son so complicated? The words seem to get stuck on the tip of my tongue, which is ironic because they take up so much space in my mind. I often ask myself, why is it I need to detail his medical complications when the little person he is so proudly toddles before the world to admire? Why not let his invisible illness stay invisible? Finding my voice will teach him to one day find his. So, I attempt to answer the question we are so often asked.

Life is complicated when your child is sick, but where to begin.

Do I begin with the scary pregnancy that led to so much monitoring that I was on a first name basis with everyone in my doctor’s office? Or is it better to begin with food allergies? Yes, this is a topic people will get. It is simple enough to understand my kid could stop breathing if he eats eggs or has his next MMR vaccine or is prescribed certain medications. Oh wait, we just got complicated.

Do I begin with the moment that I feel our life-changed forever? Moments after I gave my son to that sweet nurse who promised she would care for him. Or the time a kind doctor calmly entered a waiting room to tell us that Parker had a chronic illness, Eosinophilic Esophagitis. An illness many knew nothing about and there was no cure, yet it had wrecked havoc on his insides. As I wrestled with the realness of his diagnosis, I was still coping with carrying my baby to an operating room, with a breathing tube. I tried my best to find that mom who never let life get too complicated. Would it be weird if I began to dance in this somber poorly lit waiting room?

I cope best with the scary stuff through the reassurance of facts. I could describe the medical implications of an esophagus inflamed by its reactions to food or I could describe the difficulty an invisible illness can cause in a child’s life. The symptoms were always easy to describe; he vomited a lot, every day, many times a day. He can cough incessantly and struggle to chew and swallow food. He gets tired a lot and gets sick easily. Let the side head tilts commence. The pity is where I panic.

Life is complicated when your child is sick, but no one understands.

“Wait, he has what? He will outgrow it though, right?”  

I immediately want to wrap my mother bubble around my little boy—the bubble made of love and fierce loyalty that has protected him through every test, procedure and appointment. The fierce bubble that knows what food is safe at every meal, every restaurant and every family party. I want to run with this bubble made strong by his father, sister and me to a place where what he has would not be so difficult to understand.

I never want him to feel pity.  

Beneath the litany of medications for inflammations and infections, beyond the countless invasive procedures requiring too many needles and scary hospitals stays, behind the allergen free food and copious notes written by a careful and overwrought mom, is the most perfect little boy. Being a fun Type A mom (yes, I know how ironic this sounds), I was at first fearful of complicated. What I have learned through each sleepless night or medical mishap with my baby is that what is most complicated in life makes you appreciate the vivid beauty with a clearer purpose.

Life is complicated when your child is sick, but the beauty is so much brighter.

The complications in life are what stretches a person to their very core, unveiling the terrifying realities life hands you. And at the same time,   illuminating what matters most. My son is so very sweet. At two-and-a-half years old, he loves trucks, big boy underwear (and all things kept there), and stealing his sister’s favorite crayons. He runs fast and smiles big, yet unbeknownst to even his most adoring fans he is so very complicated. Living with food allergies and an autoimmune disorder that affects the simplest pleasures in life, like eating food, can complicate his life in a blink of an eye.

Some days I feel it creeping into every corner and dangerously close to defining our life, but in these moments I turn to what we do best. We play. We turn the music up loud and dance. In these moments,  our complications in life become fluid, fun takes over, arms and legs flail wildly and giggles are plentiful. The release feels good for all of us.

Through the layers of complication, I see the doctors and nurses that we trust. I feel the support of our family and friends. Most importantly, I know the resilience of a child. I see this astounding resilience every day in my son. You might see it to, that little dimpled cutie smiling crazily at you at the grocery store.

This is now my role as a mother. I am a mother to a child with a complicated illness. A life I never dreamed would be mine, but one I wouldn’t trade for the world. It is mine and I love every part of it. Some days it completely exhausts me, but it makes me work harder to be the  best mom I can be to my little Parker James.


About the Author

Jacqueline Royael

Jacqui Royael lives in upstate New York and works as the Director of Operations at the Double H Ranch. Double H is a non-profit organization founded by Paul Newman that provides programs for children with life threatening illnesses. She is surrounded by the love of her daughter, son and husband. After they are all asleep she loves to write stories about them. Adventures with her family and the inspiration of her work provided her much joy and funny stories to share.

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December 2014
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