Hopes, Wishes and Prayers...Oh My

My human bay doll at 6 months

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, over 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 coherent 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 lulled me to sleep in the early morning hours, I clung to the last remaining shreds of denial and hope. Hopeful that Jayde's test will show she is okay, healthy, and 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 baby's unbridled excitement over the idea one of their humans is 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 talked with my dear friend Google, briefly researching SMA Syndrome and Nutcracker syndrome before I shared 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.

There is a reason we cannot see our own future. If we had known the path the day we visited Hopkins merely five weeks ago would lead us down, we could not have remained calm.

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 several 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 a few of those 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. It is 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. However, 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 full-time in our school district's digital academy. Up until now she had done a blended curriculum, but she has been unable to attend school for over three months. All of her classes will now 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 that 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. However, 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 her 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.