I am lying in bed trying to wake up, I grab my phone and browse over my calendar. The last few months have been a whirlwind...I have always relied on my calendar...though lately, I could not tell you the day without its assistance. I am submerged in a deep haze. Our schedule for the next ten days is overwhelming. What was I thinking of scheduling two major doctor’s appointments on the same day?!? The simple answer, I wasn't. To the Super Moms who do it all, are beautifully put together, your homes are clean, and dinner is on the table at 6 P.M. every day...I applaud you. I also wonder when you sleep and if you are actually human.
My feet hit the floor, yet all I want to do is crawl back in my bed, pull the covers over my head, and sleep away the grief...praying when I wake up, this ache in the pit of my stomach and the accompanying heaviness that begins from the top of my head down to my toes will have magically disappeared.
I have said it before, when someone you love dies, life should pause. A brief hiatus, allowing you to process the varying stages of grief... without having to force a smile or politely lie when asked, "How are you?' Maybe in a perfect world, then again in a perfect world, immense sorrow would not exist. In a perfect world, my Mommom would still be here. In a perfect world, Jayde would not be sick. But our world is far from perfect and my Baby Girl needs me to be fierce...or at least half fierce...so no crawling back in bed and pulling the covers over my head.
We are spending the afternoon in the hospital pediatric unit, waiting for the fluid-filled bags to empty into her body. Only to return next week for another four hours and do it all over. She will continue this process for the next six weeks, until her surgery on August 17.
Today is the first time Jayde is receiving IV therapy, not knowing what to expect was a little unnerving for both of us. Thankful for the pleasant surprise of a private room. We are checked in, Jayde is comfortable in her bed and the magic fluids are beginning to coarse through her veins. She is in a glorious mood...NOT. She has a great dislike for hospitals, yet an even greater disdain when she is the patient. I cannot blame her, what 16-year-old wants to spend a beautiful summer day laying in a hospital bed? Still, we are hopeful this will give her some relief from her many debilitating symptoms.
I am curled up beside Jayde in the "parent’s recliner," listening to the slow drip of the IV, while she quietly rests. Many thoughts begin swirling through my mind, I realize the many stages of grief can be applied to more than grief. Denial, bargaining, blame, anger, sadness, and acceptance.
Denial...my child is just like everyone else, she cannot be as sick as she seems. Bargaining...God, please do to me what you want, please just make her healthy. Blame...did I give this to her? Was this caused by the medication I took while pregnant with her? What genetics did I pass onto her? Anger...this one is more difficult to navigate through. Certain things are a sure trigger, then sometimes this stage rears its head without warning. Sadness…this needs no explanation. Some days are much easier than others to cast off the shroud of sorrow brought on by our journey with POTS and the newest diagnosis SMAS.
I have been swimming in these stages for the last few years...well most of them...I have not allowed myself to claim acceptance yet. Always a fighter, not wanting to give up. Not wanting to believe this is my daughter's life. Refusing to accept there will never be a cure.
Jayde's IV therapy was supposed to be done in our home. Since she is under 18, therapy must be done at the hospital. When I found out we were required to travel to the hospital once a week, I became frustrated - angry even. I thought of the many hours I could be performing more productive tasks, than sitting in a hospital...simply waiting for the bag to run dry. To no avail, I even tried bargaining with the doctors and nurses to provide in-home therapy.
I am exhausted from swimming through the stages. As I sit relaxing in the recliner, I am thankful for the opportunity to not be productive…for the opportunity of not pretending to be Supermom, to be just me and breathe. Some circumstances work out for the better, even when we cannot see the bigger picture from where we are standing.
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