The Art of Never Giving Up When You Have a Chronically Ill Child

My daughter and I are at opposite ends of the house, she is safely out of ear shot when I say, “I give up!” I am unable to re-cork my explosion of emotional words. Instantly, I regret my words as a cloud of guilt washes over me. Though it can be daunting, caring for a chronically ill child requires you to keep your wits and maintain composure whenever possible. Even when it feels impossible, somehow you learn to figure it out. I walk out onto our deck, allowing the necessary tears to fall, regrouping myself before reentering our home.

A few days prior to my outburst I sat in our living room, with my phone on speaker, discussing the latest test results with my daughter’s cardiologist. She somberly sits across the room, intently listening to a conversation about her. It is not great news, but we already knew it would not be. Trying to provide encouragement, her doctor urges me, “Don’t give up.” I am quick to respond, “It is not in my nature.” Jayde smiles at my words, while her doctor continues, “Good, we are going to need that, so we can do everything possible to make your little girl better.”

While I take a mental break from the newest information, I observe my social media feed is filled with pictures of teenagers… most of whom have forgotten her. The phrase, “Out of sight, out of mind,” passes through my head. These people she once knew are attending school trips to NYC, performing in choir concerts, dancing in recitals, obtaining their first jobs, lettering in sports, dressed up for prom and getting their driver’s license… all events my daughter once participated in or should be participating in.

I become sad — angry at a four-letter acronym I did not know existed until a few years ago. Heartbroken at the thought four little words could steal my daughter’s teenage years. I have no choice but to watch this illness leave my precious daughter unable to get out of bed most days. My frustration with POTS runs deep… if it were tangible, I would probably throw something at it.

Any given week I spend hours doing research, making phone calls, and sending emails all related to her postural orthostatic tachycardia syndrome (POTS). There are also the countless doctor’s appointments, tests and lab work. I am there beside her, but she is the one who must endure the poking, prodding and discomfort… I am merely an observer. As the observer, there have been many moments where I sit in disbelief that this our life — her life. Undoubtedly, today was one of those moments.

My daughter has another specialist as an outcome of my phone call with the cardiologist, bringing her total to six specialists. I banter with my adult son about the recent doctor information, “When she reaches 10, does she get a prize?” He responds with sarcasm, “Ummm no, she gets her own case manager from the insurance company.” I pause in laughter before responding, “That is funny, but she already has one… me!” Yet it is the truth, I am her case manager. I am also her advocate, her nurse, her biggest cheerleader, her champion and everything and anything else she needs me to be. We have always had a very close relationship, however, POTS has managed to tether us together.

Whenever possible, I schedule our appointments at the same time. Most days it makes life easier, given the uncertainty of her health from day to day. Today I needed to call and cancel and reschedule our eye appointment… for the third time. Thus, the reason for my outburst. She lays in her bed on the verge of tears, looking up at me, “I can’t help it, I don’t want to feel this way.” Of course, she doesn’t! I stroke her hair and kiss her forehead, “I know Sweetie.” No person desires to be heaving into a trash can most of the afternoon, waiting for their medication to quell the nausea and lull them to sleep. She fights every day just to live her life, some days she has no choice but to give in… all the while she is still fighting.

I re-enter her room to find her curled up on the floor with one of the cats. For the time being, her medication has worked its magic, soothing one of her many POTS symptoms, allowing her to rest and gain strength to fight another day.

From the beginning, this has been an unpredictable journey, one no parent ever imagines themselves being on. I am grateful for the opportunity to converse with other parents and caregivers who are traveling the same path as us. One of the many side effects of this illness, is the overwhelming sense of isolation. The knowledge we are not alone is comforting. These conversations prompt me to realize I belong to an exclusive club, the only membership requirements: having a child who is a fighter; an individual who is a warrior to their core… and a deep determination to never give up.