What It's Really Like To Parent A Child With A Chronic Illness

I’ve run out of clever ways of telling my son that his diagnosis makes him bionic man.
William Eric Snell Sr, E Snell Design

My son William persevered from the womb.

My mobility was limited during my pregnancy due to placenta previa, several previous miscarriages and acute bronchitis. Running to the emergency room every month because I was bleeding forced my husband and I to expedite our wedding plans, from two years down to a few months, as we tried to accept the harsh reality that I might not survive after a mandatory Cesarean.

Thankfully, William was a healthy 8 pounds, 11 ounces. I was given an emergency blood transfusion right after the delivery.

My son was cleared of health ailments at birth, so I never expected that a simple blood test for summer camp would change the course of his entire life: He was diagnosed with Type 1 diabetes. I spent that Fourth of July in a Brooklyn hospital’s children’s ward, listening to my son beg nurses not to do another finger stick or give him insulin injections four to six times a day.

Prior to his diagnosis, we mostly knew about Type 2 diabetes. It’s not uncommon to hear about family members with Type 2 diabetes, especially in communities of color, and it’s the one featured in most commercials and information for the public. If you don’t believe me, entertain yourself by looking at the lack of information about Type 1 on the American Diabetes Association’s website.

The day of his diagnosis, the doctor explained that William’s pancreas doesn’t work on its own. He can live a long life as long as we diligently care for him. Luckily, William was diagnosed fairly early. If the diabetes had been discovered later on, he could have fallen into a coma or died.

Jessica Siemons Photography

In hindsight, so many signs of his condition were there. William was constantly thirsty for months. We told him to stop drinking so much juice and suggested water. I could sometimes hear him using the bathroom two or three times throughout the night, and he started to have bed-wetting accidents. My husband and I would change the sheets, instruct him not to drink anything an hour before bed and told him to try to get some sleep. There were days where William felt groggy, but I brushed it off as him wanting an excuse to skip school.

My husband, Eric, and I learned how to properly attend to William’s needs. Within a few days, we were educated on how to count carbohydrates on the back of packages, what foods to avoid and how to handle emergency situations.

Our average routine shifted from reminding William to brush his teeth to checking his glucose levels, testing his urine for ketones and giving him a dose of medication to regulate his glucose levels after every meal. I watched my child’s innocence walk out the door and be replaced with calloused fingers and bruised injection sites.

Fighting with a child to give him insulin injections is hard, but finding delicate ways of explaining mortality to a preteen is devastating. Even as a 32-year-old who has experienced a decade of health issues, I haven’t fully mastered this concept.

Being a parent to a child with a chronic illness is like feeling your lungs collapse and then breathing through a straw. In the beginning, I found myself hovering over my son’s chest during naps to make sure he was still alive.

All of the manuals and instructions in the world couldn’t mentally prepare me for the grief I felt over my son’s illness. When he was first diagnosed, I found myself weeping silently before sunrise or taking long showers to prevent my son from seeing me shut down. My sleep was disrupted by nightmares of burying my child.

William Eric Snell Sr E Snell Design

There’s a lot of unpredictability with this chronic condition. Each time my child wakes up with a stomachache or dizzy spell, my first response is to check his numbers. At one point, I shook a sleeping William for half an hour because his blood glucose number dipped down to the 30s. The normal blood glucose range is between 70 and 99 when not eating. Anything under 50 on the glucose monitor can mean that only a shot of Glucagon ― a hormone that could possibly spike William’s sugar to an exceptionally high number within minutes ― could keep my son alive.

Something as low as 30 meant my child could have a seizure or experience a loss of mental functions.

When I think that we have a grasp on his glucose levels, anything from hormonal changes that naturally occur during teen years to a common cold can change his regimen. As meticulous as I can be, I fear that there will be a day where his insulin regimen will be too much for his body to handle.

Normal activities aren’t always normal anymore. Taking William to a restaurant requires my husband and I to request nutritional facts at the counter, and they aren’t always available. Some websites are pretty good to use for carb counts. If all else fails, I resort to a thick pocket manual or go into my mental Rolodex after years of remembering carb counts for common foods.

William has to perform a fingerstick exam to check his glucose levels a minimum of five times each day. When done in public, this opens him up to unwanted questions or half-assed well-wishes. Some people push their homeopathic remedies in front of my son, who is hopeful for a cure that may not come in his lifetime.

As a parent who lugs around a kit filled with sugar tablets, a glucose monitor and a preloaded insulin pen just in case my son’s OmniPod fails, I have unwillingly become the go-to person among my peers for any diabetes-related information. It’s almost like I’m stuck in a twilight zone of people trying to give me solace by telling me “it could be worse” or offering horrible comparison stories about their Aunt Jane who died 10 years ago from Type 2 diabetes.

William Eric Snell Sr E Snell Design

Unlike most children, my son can’t dive into a meal without journaling everything he eats or drinks. Small things such as sneaking candy after hours can mean risking a night in the ER while we contemplate why his numbers are high enough to put him into a diabetic coma.

Sometimes I have to remind myself that he is still a child. I catch myself mid-sentence at least twice a week, angry that he forgot to pack his monitor and his kit for school.

William attended his best friend’s birthday celebration last March. Shortly after, we went to a diner, ordered food and jumped on the subway. While commuting back home, my son started exhibiting signs of distress and quickly became overheated.

Going through an emergency situation underground is disastrous. Passengers held the door open for me at Jay Street as I hauled my son up several flights of stairs. As one pedestrian assisted me in calming down my son while I talked with 911, another adult yelled at me as she overheard me telling the dispatcher that I had served my son a burger an hour earlier.

“You’re a fucking idiot and I hope child protective services take away your rights,” she yelled. “You cannot give a diabetic a burger, you bitch! If your son dies, it’s your fault!”

Before I knew it, I was engaged in a full argument over my ill son as another adult tried to arrogantly lecture me about Type 2 diabetes, an illness my son doesn’t have. I knew she spoke from a place of ignorance and concern. Still, it’s hard not to defend your parenting skills to a mob of people who are judging you about things they know nothing about.

After eight hours in an overcrowded emergency room, William’s glucose numbers dropped to a normal range and we were spared an overnight visit (but not the hefty copay).

“Recently, my son asked me to “let him grow up.” I realized that I had become a helicopter mom since his diagnosis.”

My social life has changed in several ways since my son’s diagnosis. I cannot call just any babysitter in order to attend social gatherings. My husband and I have to diligently go through our very limited list of friends and family members who aren’t terrified of giving my son his insulin medication despite us holding their hands through the process. William’s diagnosis means that I don’t allow him to go to sleepovers unless the parent is adequately trained to attend to my son’s needs.

I’ve run out of clever ways of telling my son that his diagnosis makes him bionic man. I yearn for his condition go away, but he cannot outgrow this illness. Still, I encourage my child to be the absolute best person that he can be.

Like most children, William loves video games and is exceptionally animated. His brilliance astonishes me. Recently, my son asked me to “let him grow up.” I realized that I had become a helicopter mom since his diagnosis. I didn’t know that I was paralyzing my own son because of my own fears about his diagnosis.

William has taught me so much about my inner strength and his heart. Although he has a chronic illness, he worries about everyone else. William is one of the most thoughtful human beings that I’ve come to know.

Some days, I’m tired of my friends and family members praising me for being “strong.” Nobody elects to be strong at the expense of their child’s health. But through his diagnosis, I am reminded that he is more than just a child with a chronic illness; William is my heart.

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