When I Found Myself Asking My Chronically Ill Daughter the 'Maybe Ifs'

I have a friend whom I would constantly tell, “Stop beating yourself up, no one is harder on you than you. You are a great mom and your own worst critic.” But it is true, mothers are inherently harder on themselves than anyone else could ever be. If only we were in possession of a magic switch that eradicates the little voices of self-doubt running rampant throughout our minds.

I have my own little voices and faint whispers which are trapped inside my mind. They frustrate me, primarily because they are not my voices…but the voices of other people. I call them the, “maybe ifs.”

“Maybe if she got more fresh air.”

“Maybe if she ate better.”

“Maybe if she wasn’t on so much medication.”

“Maybe if she tried to exercise more often.”

“Maybe if she just tried harder.”

Maybe if…God only knows how much our mental health would be affected if we heeded every piece of unsolicited advice. Still I try, remembering most of this advice comes from a place of concern and love. Though, to the 16-year-old girl sitting on the receiving end of the, “maybe ifs,” it is a sad and bold reminder that people just don’t understand her illness. I try with all my might to shield her from the, “maybe ifs.”

Today was all planned out, today was supposed to be different. Why? There were not any doctor’s appointments or lab work scheduled, the normal prerequisite for us leaving the house. Our plans were to drop off her prom gown to be pressed at the cleaners, then get our nails done. Afterwards we would enjoy dessert, before dinner, at our favorite little cafe.

But we didn’t, we couldn’t…she couldn’t. Getting our nails done has always been the one thing she could muster up an hour of energy for. Even if I needed to get her home and into bed right away, she still manages to power through her exhaustion.

Sadly, today I was one of the, “maybe ifs,” and I was the breaker of my own heart and hers. I may not always comprehend what she is experiencing physically, or mentally, but I see it in her eyes…and those beautiful eyes convey to me all I need to know. My mother urged me not to be so hard on myself, “You were only trying to encourage your daughter.”

Today, I needed to be my own friend and listen to my own advice. Easier said than done.

My daughter’s overwhelming fatigue, along with her extreme nausea, have become the masters of our home. Short of eradicating postural orthostatic tachycardia syndrome (POTS), there is not much we can do to change that situation…though we keep desperately trying.

A few moments after attempting to convince her that getting her nails done would make her feel better – as if a manicure would magically fix all that is wrong in her world – her nausea turned into vomiting and I was choking on my, “maybe if.” Suddenly, I was one of the people I frantically attempt to shield my daughter from. Today, I understood why it is so difficult for others to comprehend what she lives with every moment, of every day. Today, I remembered why I have spent the last few years trying to bring awareness to POTS. Today, I was reminded, just because you cannot see it, it does not mean it does not exist.

Tomorrow we head to Hopkins for more testing and hopefully a few answers. Thankfully, today will soon be over and tomorrow will be a new day. A clean slate with unending possibilities. Maybe even the possibility of being a day closer to a place where the, “maybe ifs,” of the world are replaced with, I understand.