Hopes, Wishes and Prayers...Oh My
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.
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