How Parents of Sick Children Become Masters at Juggling

I like to watch jugglers. From balls and plates, to bowling pins and swords, performers toss items into the air one after another, never letting them hit the floor. Their hand-eye coordination is tremendous, as well as their ability to move, twirl, and even ride a unicycle while keeping the items in motion.

Juggling is a skill that comes easy to some. However, some of the best jugglers I know come by this expertise without even realizing how accomplished they are at this feat.

Parents of newborns begin their training in juggling with bottle feeding every few hours on little sleep. Despite their lack of sleep, work demands continue, as well as the care of other children. Soccer schedules, doctor appointments, grocery shopping, and quality family time are a few items that must fit into each day. Weighing the importance of what needs to be done next is how parents learn to juggle the complexities of life.

The art of juggling reaches a new level when a child has a rare disorder. I vividly remember bringing my firstborn son home for the first time. Like all new parents, we spent the year learning how to care for a newborn. However, the diagnosis of severe hemophilia catapulted my husband and me into a realm of heightened uncertainty.

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My worries were like those of most parents of newborns. Is my son ready for rice cereal in his formula? Is he developing at a healthy rate? Is he breathing in the middle of the night? Is he crying because he’s wet or hungry? These concerns are enough for any parent to consider. But my child is living with a severe condition, so how do I know what to do?

Along with managing my son’s sleeping schedule, preparing bottles to send to daycare, and attending routine doctor appointments, I now had to learn how to advocate for my son without any prior exposure to hemophilia. How would I know if he’s having a bleed? Is he crying because he’s wet, hungry, or, even worse, in pain?

Every bruise or prolonged bleed from a cut or new tooth meant evaluating whether to take him to the clinic. The doctor appointments were no longer the regular ones that babies required. I now had to juggle the everyday things that babies need, while also being my son’s eyes and ears as his advocate in a way I’d never imagined.

As the mother of two sons with hemophilia, I consider myself a juggling master. Some may call it multitasking, but the more I consider how jugglers throw items into the air and keep them in constant motion, the more I see how parents of chronically ill children are true jugglers.

Instead of going back and forth from one task to another, often ranking jobs in terms of importance, the juggling parent gives equal attention to the many issues they are keeping in the air. Sometimes this juggling act lasts for months on end.

It’s challenging to breathe deeply when caring for a child with medical needs. What I do know is that certain seasons of life require parents to be master jugglers. I’ve lived through a long season of not juggling, and I’m grateful.

I hope I can manage the appointments and scans needed to manage my younger son’s chronic pain. But regardless of how much time is spent not juggling, the movements return at a moment’s notice.

I understand the plight of the master jugglers. These amazing parents take great care of their children with chronic illness and meet the demands of family and work. My hat is off to them. May we all have the strength needed to get through the difficult seasons.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.