I sit in my living room with the curtains pulled open, fixated on the burnt orange glow across the horizon as it muddles with the bright blue of the morning sky. Having endured many late nights and all-nighters lately…the last six months, I can count on one hand how many times I have been awake to see the vivid colors of a sunrise or hear the little corner of our world come to life. Most mornings, as Chris kisses me goodbye before he begins his day, I am barely comatose as I utter, "I love you, " audible in a way only he can understand. We are naturally night owls...however, Jayde’s POTS has taken that character trait to an entirely new level.
As my pillow and plush weighted blanket lull me to sleep in the early morning hours, I clung to the last remaining shreds of denial and hope. Hopeful Jayde's test will show she was okay, healthy, not in need of major life-altering surgery. The combination of the morning noises of the coffee maker, Chris in the shower, and our fur-babies unbridled excitement over the idea one of their humans are alive and awake jolts me from my sleep. I roll over to check for the email I have been waiting on since we saw Jayde's surgeon almost eight days ago. I really need to stop leaving my phone on my nightstand, though everyone important to me knows that my cell phone is the best way to reach us in case of an emergency. Old habits die hard.
Just as I check my phone, the email I have been waiting on comes in. In addition to the truth we feared, the findings show another rare condition. I re-read the information and talk with my dear friend Google, briefly researching SMA Syndrome and Nutcracker syndrome before I share the news with Chris. I poke my head into the bathroom to tell him the current results. Busy with his morning routine, his autopilot is set to get ready for work mode. He does not break from character.
A few minutes later, he finds me. Trying to be optimistic, "We will have to wait for the surgeon to call you and see what he says." I have read the report. I am feeling many emotions…but optimism is not one of those emotions. Sunday, I was at the hospital, turns out the pain in my lower chest was an ulcer. Not a big surprise. My stomach is churning. I wish for another one of those magical GI cocktails the ER doctor gave me.
I decided I might as well make effective use of being up at the crack of dawn. I sort through a load of laundry as Chris gives me one final hug before leaving to begin his day.
Yesterday, Jayde and I had what can only be described as a fantastic day. Of course, we had a doctor’s appointment. However, we managed to squeeze in six different stops before exhaustion forced us to call it a day. We pulled into the driveway around 7:15. While Jayde sat in the car for two of those six stops, we still had a wonderful outing. Later in the night, she was feeling the effects of our activities. Though I was grateful for our time together, I was sad to see the toll it took on her and her health. A not so gentle reminder her POTS is relentless.
Monday, Make-a-Wish phoned, informing me they were granting Jayde a wish. As you can imagine, I cried a river of tears with varying degrees of emotions. Someone besides Chris and me recognizes Jayde's struggles. The words, "My daughter is a Make-a-Wish kid," are words I never imagined spilling over my lips.
We have a meeting with Jayde's principal later today. We are enrolling her in our school district's digital academy. Meaning she will not attend a brick-and-mortar school her junior year. All her classes will be online. Life is rapidly changing in ways we never imagined.
I am now lying in bed, attempting to steal a few more hours of sleep before our meeting. However, the knowledge of Jayde's test results is making that mission nearly impossible, as my mind continues to race and wonder. I do not believe even a Hollywood makeup artist could cover the black circles under my eyes or hide the visible effects from the past few years.
After my ulcer diagnosis, I explained to Jayde, while she and her health are my number one priority, I need to take some time to take care of myself, so I can take care of her. Naturally, she understands. I just wish I had before I set my controls on autopilot. My PCP has attempted to convince me I need anxiety medication. I entertain the fact she may be right. Though I do not believe one little pill can eradicate the stress in my life, magically correcting all that is wrong in my world...magically healing my daughter and giving her back the years she has already lost. I believe my doctor's medication is a band-aid, and band-aids do not heal the wounds–they only conceal what is wrong.
It is quite common to have POTS and no other illnesses. However, there are roughly twenty-five other rare and obscure illnesses, and if you have one of these, you will almost certainly have POTS.
I come to the realization Jayde’s POTS has been a band-aid, masking other illnesses...making them invisible to even the trained eye. We have only begun to pull back her band-aid. At this point, I can only hope and pray what we have discovered is all there is to find. Jayde is my miracle...my wish. Now nestled in my bed on the verge of sleep, I send another wish up to God and out into the universe for her to experience a miracle of her own–a cure.
Popular posts from this blog
Perseverance is not merely a word used to define an action, it is a state of mind, a form of being. Roughly ten days ago Jayde attended a concert with her brother, Brady, and her boyfriend, Brett. We purchased the tickets in November; they were $13. We were not too concerned if she was unable to attend. Yet to Jayde, this concert was everything. She had been messaging with the band’s photographer. He had placed her on the guest list and was giving her a press pass to take photos. Her excitement was palpable. So was her stress, the week leading up to the concert. She was worried her POTS would make it impossible for her to attend the show…her fears were not unfounded. We dropped the trio at the venue’s door, then proceeded to dinner and a movie close by. A nice respite, even if it was short. Brady was a protective big brother, texting me throughout the evening, keeping me abreast of Jayde’s wellbeing. My biggest fear was having to retrieve the kids early and the disappoi
While running errands a few weeks ago, I ran into an old acquaintance. We were catching up with the usual pleasantries. “How is your son? Does he have a steady girlfriend?” I replied, “No, but he and his boyfriend have been together for more than a year and a half.” With a horrified and shocked look, followed by a snarky reply, she inquired, “Well, how is that?” I gave a quizzical glare until she finished. On some level, my mind knew where her comment was going, “Having a gay son?” After what I am sure was an equally, if not more, shocked look in my eyes, followed by an image in my mind, playing out like a seventies cartoon of a baseball hitting her upside the head. I replied with, “I don’t know. What is it like having a heterosexual son?” My response left her speechless, and we soon parted ways. Since that afternoon, I have not been able to shake the insensitive encounter from my thoughts. I am unsure if it was the underlying tone of her question that offended me. Perhaps it
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 ph