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By Holly Kearl
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Soon, my spouse Mark and I will take turns sitting at our gregarious and curious 6-year-old's indoor summer camp with our work laptops and his seizure rescue medication in case we need to save his life.
This is the age at which most parents let their children experience some independence, but Mark and I must constantly watch our child because his periodic seizures are so serious.
We can't be free-range parents and we're not exactly helicopter parents. Instead, the type of parenting that I most identify with is a new category that I call high-stakes parenting. Parents like me are thrust into high-stakes parenting by their children's health and medical conditions that are classified as rare diseases, chronic illnesses, cancer, or other disabilities.
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Mark and I became high-stakes parents just three hours after our son was born. A nurse discovered he had no anus—his pale bottom was completely smooth. This shocking revelation led to a 3:00 a.m. ambulance ride and admission to a neonatal intensive care unit at a bigger hospital.
Two days later, he had surgery to create a stoma on his abdomen for stool to expel and by then, we knew he had two rare diseases. By age four, he'd have four diagnoses, 12 surgical procedures, and a regimented daily care schedule to which we must adhere to keep him healthy. Forgetting or delaying any part of it could harm him.
At age six, our son now has five diagnosed health conditions. Four of these conditions are rare. Because these diseases are very rare, it may take time to find the right specialists to diagnose and treat them. Indeed, one of the most frustrating parts of high-stakes parenting is that if you don't learn the diagnosis or find the right specialist in time, your child may suffer.
Mark and I have had that experience more than once, including last year when our son began having periodic seizures without a fever. A neurology team diagnosed him with epilepsy and prescribed medication, but he still had a seizure every few weeks.
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Three months after he began medication, he had his first status seizure. If an emergency team had not arrived at our home when they did with an oxygen tank, an Emergency Room doctor said he could have experienced brain damage or died.
From genetic testing, last summer, we learned he is on the spectrum for a rare genetic form of epilepsy called Dravet Syndrome, and his initial medication and the next one his doctor prescribed were not a match.
After he was intubated and taken to the Intensive Care Unit due to a two-hour status seizure that began in his Kindergarten classroom last September, I searched for Dravet specialists.
It took two months of waiting for us to consult with three out-of-state specialists who agreed with each other about a tailored medical plan. His seizure frequency reduced on that medication, but we fear the number of serious status seizures he had before the change negatively affected him, including diminishing his ability to be in warm weather.
For the first time in his life, this summer he mostly must stay inside.
Would he tolerate heat better if we met with specialists earlier and changed medications sooner? Or would his condition have deteriorated regardless?
I don't know.
Welcome to high-stakes parenting. There are no clear answers, and you must simply do the best you can with the limited information available to you.
Indeed, at its core, high-stakes parenting describes the frequent choices and actions we must make to try to keep our beloved children healthy and thriving. Sometimes we get it right and sometimes we don't. When we get it wrong, the consequences are usually greater than for other parents who make mistakes, and it's our children who pay the price.
High-stakes parenting means we must become medical experts. We must learn to manage medicine: insulin, feeding tubes, tracheostomy tubes, ostomy bags, and catheters—take our child to slews of medical and therapy appointments, work with insurance companies and pharmacies, research, and regularly negotiate with schools to try to ensure our child receives their fair education while having their unique needs met.
High-stakes parenting means we always keep a running list in the back of our mind, telling us what we need to do and when, to keep our children functioning. If we forget or miss a medicine dose or a timed intervention, our kids could suffer, even fatally.
For people in this position who are single, the stakes are even higher. Systematic racism in medicine means families of color may face even more barriers than white ones when trying to access diagnoses and care in a timely manner—or at all.
Issues like one's socioeconomic status, immigration status, insurance status, comfort level with speaking English, and whether there are other children in the family can also impact this type of parenting.
Too often, high-stakes parenting means living parallel lives to those around us while we focus on daily care, appointments, hospitalizations, and meetings. It means missing out on community events and staying home a lot. It also means revolving our lives around our children's needs.
Connecting with other caretakers who adhere to high-stakes parenting is useful and important. This may mean virtually joining support groups, following organizations focused on our child's conditions, or finding offline people who can understand us.
We also need the people in our lives—family members, friends, neighbors, and employers—to try to understand what high-stakes parenting means. Then, we need their love, support, grace, flexibility, understanding, and continued connection so that we can care for our rare children as best we can while also not becoming completely isolated.
We need support—like my employer's remote work option—as we do the best we can for our children and try to help them live their most beautiful, full lives.
Holly Kearl is an author, founder of Stop Street Harassment, community manager at the Aspen Institute, and the mother of two children. Her oldest child has four rare conditions.
Holly Kearl is an author, founder of Stop Street Harassment, community manager at the Aspen Institute, and the mother of two children. Her oldest child has four rare conditions.
All views expressed are the author's own.
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