“Have you ever Googled ‘POTS,’ Mom?” The pediatric cardiologist asked me this as my teenage daughter, Jules, lay still on the examining table, hooked up to a heart monitor and other assorted wires.

I didn’t want to admit that I had. I was, after all, an anxious person, and inevitably ended up Googling anything health-related more often than not. But I was almost relieved to do so with her this time, as I felt somewhat validated, knowing my months of advocating and searching for answers to Jules’ frightening and sudden health problems were on target.

“Yes, actually, I did. I just didn’t want to come off as a crazy Mom for doing so,” I answered.

“Well, you were right. This seems like a case of POTS, or the proper term: Postural Orthostatic Tachycardia Syndrome. Basically, her autoimmune system isn’t working. The brain sends messages but they get mucked up along the way, causing all of these symptoms and issues. I will refer you to a local specialist who can properly diagnose and start you on medication to manage it. She’s young; hopefully, in time, it will fade away.”

Fast-forward five years

Jules is now an adult. Her illness hasn’t faded.

Jules was born healthy, small but strong. She grew into an artistic, shy, sweet girl. Near the end of her elementary school years, she was given the HPV vaccine, as were her peers, and within months, her body began to fail her. As she started high school, we assumed it was stress and her OCD and anxiety that were causing her fatigue.

From fatigue, she began feeling dizzy, almost fainting, and she experienced sore joints, exhaustion and a racing heart. This went on until she was forced to drop out of high school. Amazingly, she maintained honour-roll marks, but her body fought her until she was bedridden.

I was terrified, yet more afraid to dig deeper. How could we have a sick child? What was this? Would it be fatal? That first doctor, confirming my worst nightmare, was only the beginning.

There was some relief in that it wasn’t fatal. Not ‘life-threatening’ but more ‘life-altering’. No truer words were ever spoken.

Every parent has vibrant, colourful dreams of what they hope their children will become. Hope for their future, sparkly deep-seated wishes for them. Of course we do. But when your child is diagnosed with something sinister, something cold that threatens those warm, sunny thoughts, in an instant you’re transported to another universe. A realm so unknown and so claustrophobic that breathing becomes a fight. 

You can literally feel your heart pumping faster and the blood draining from your veins. You’re dizzy with sudden, blinding information. Google becomes a necessity, yet a detriment. You become clumsy, awkward; you age faster than you would. Days and nights melt into one volcano of ugly searing lava, endless and painful.

This is my life

As the mother of three beautiful daughters, I am also the mother of a child with a chronic illness. It’s called Dysautonomia, and it’s an umbrella term for various similarly linked illnesses, such as Lyme disease. Her specific illness is POTS, or, Postural Orthostatic Tachycardia Syndrome.

In simple terms, if there were to be any, it is short for the autoimmune system malfunctioning and sending incorrect messages from her brain to her body. A vicious invisible illness that renders my child almost bedridden, yet displays her to the unseen eye as normal and healthy. A sad secret we harbour within the deep confines of the family, coping daily with frustrating aspects of illness that most families, thankfully, never even realize exist.

True, our lives are filled with joy and happiness, wrapped in ‘living in the moment,’ always with deep gratitude for what blessings we do have. Yet, by the same token, our lives are simultaneously immersed in doubt, fear and anxieties, forcing changes upon us that we would rather not have to manage as a family unit.

This is what it is to love, chronically.

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