When Giving Up Is Not An Option
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 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.
Any given week I spend hours doing research, making phone calls, and sending emails all related to her (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 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. 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 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 hair and kiss her forehead, “I know Sweetie.”
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.