When Giving Up Is Not An Option

There they are, the words I am not supposed to utter. Nonetheless, the unspeakable phrase comes rushing out of my mouth, much like a dam that has broken. The peacefulness of acceptance is waning today. Fortunately, my daughter and I are at opposite ends of the house, she is safely out of earshot when I screech, “I GIVE UP!” I am unable to re-cork my explosion of words. Instantly regretting my emotionally charged outburst, as it becomes a cloud of guilt cascading over me like a waterfall. Though it can be daunting, caring for a chronically ill child requires you to keep your wits and maintain composure whenever possible. You learn to master the art of squashing, the varying emotions, deep below the surface. Even when it feels almost impossible, somehow you learn to figure it out and it becomes your new norm. I walk out onto our deck, allowing the necessary tears to fall, collecting myself before I re-enter our home.

A few days before 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 me, 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 scroll through my social media feed. I am unable to escape the countless pictures of familiar teenagers…most of whom have long forgotten Jayde. 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 slam my laptop shut, as I become sad -bitter even. Angry at a four-letter acronym I did not know existed, until a few years ago. Cursing the four words, which have stolen my daughter's teenage years. Despising the illness which leaves my precious daughter bedridden most days…so much so…if it were tangible I would probably throw something at it. Now we have a new four-letter acronym, SMAS. It appears Jayde has Superior Mesenteric Artery Syndrome.

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 countless doctor's appointments, tests, and lab work. I am there beside her, but it is she 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. 

The outcome of my phone call with the cardiologist, my daughter has another specialist…bringing her total to six. I banter with my adult son about the recent doctor's information, "When she reaches ten, 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. I recognize our bond as one of the rare silver linings to this illness.

Whenever possible, I schedule my and Jayde’s appointments at the same time. Given the uncertainty of her health from day to day, most days it makes life easier. Today I needed to call and cancel and reschedule our eye appointment…for the third time this month. 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 run my fingers through her long red hair and kiss her forehead, “I know Sweetie.”

I cannot imagine any person with a desire to be heaving into a trash can, most of the afternoon, waiting for their dose of Zofran to quell their nausea and lull them to sleep. This illness is relentless. 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 her faithful companions. For the time being, the Zofran has worked its magic; soothing one of her many POTS symptoms, allowing her to rest and regain the 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 prompted me to realize I belong to an exclusive club, the only membership requirement: having a child who is a fighter…an individual who is a warrior to their core…and a deep determination to never give up.