With all of the doctors and testing that has been going on, life feels more fragile these days... but to catch up on the journey, I need to go back to the beginning of one of the most trying and heart wrenching weeks of my life.
Last week, Thomas and I anxiously awaited the call from our new neurologist that insurance had approved treatments and we could start on the next immune system reboot or IVIG treatments. Thursday morning brought the much anticipated news. The attorney had sent a letter to the insurance company demanding response with approval to treat or an entire list of why they were denying treatment, and they had only five business days in which to legally respond. The clock was ticking and we were ready to move forward. The doctor assured me that we would be approved and that treatments would begin the following Friday or Monday. We braced for the journey and were relieved to finally know that although the storms of life would get fiercely worse for a season, but the calm was just beyond the storm. We held on and felt ready emotionally, physically and spiritually for the ride.
Late Friday afternoon a call came in. I took a deep breath assured that here was the call and I would be given the schedule and we would begin the next phase of this journey.
Imagine my surprise when instead of approval as we all expected, to get the call that the insurance company had denied treatment and would no longer support medical treatments for me. What? Did I hear that right? Ok, lets go over what I just heard. I braced and again listened as I heard the words, "risk benefit analysis" and "maximum benefits" and "your life not worth the money" and other fun phrases.
I gasped and literally collapsed. Although I was not looking forward to the treatments, I was anxiously awaiting the results and relief the treatments would bring.
I dropped to my knees. Thoughts and emotions swirled in my mind as I tried to make sense of the words I had just heard. And it basically boiled down to this, "my life was not worth saving" and "too sick for treatment" followed by, "they do not think the risk is worth it as I will not survive" and "how is it possible that an insurance company is allowed to play God and determine who lives or dies verses approved treatment".
As the information sunk deeper and deeper into my heart and weighed so heavily on me, I simply collapsed. How do I relay this turn of events to my husband and son or anyone else? And then I felt like someone punched me in the gut.... and this terrifying thought crossed my mind of "is this the end? Is this how it all falls apart? Is death imminent? I collapsed to the ground in the ugliest of sobs.
After pleading with my Savior for peace and hope and any emotion besides sheer defeat, I called my precious husband. Together we shed a few tears, bore testimony to one another that the Savior must have another plan and ended the phone call in prayer together. The ultimate despair faded to numbness. A complete and utter void of nothingness.
Honestly, that night was a blur. I went thru the emotions but wasn't present. I prayed for the ability to just hold it together until Hayden was in bed. Regardless of how I was feeling, I could not allow my dear son to see his mom give up hope or treatment options.
I collapsed in Thomas' arms once Hayden sought the comfort of sleep. We prayed. We talked. Thomas promised he would continue the fight to get me treatment. He also sought the direction and guidance of our Savior.
Saturday morning, I awoke with swollen eyes and a massive headache.. at a complete loss as to what to do. I called my sister. She told me to come over. Her and Troy were speaking in church the next day and we could go with them instead of facing those wanting updated news. We decided to attempt family pictures, even though my hair desperately needed to be dyed, we didn't have any "matching" clothes and I even had swollen eyes. How could we pull it off? I quickly pulled a few things together hoping they would suffice. I took a nap so I could survive the drive to Glendale and walking around for family pictures.
Luckily I slept on the ways to Jodi's house. The throbbing of my head subsided, and I quickly said a prayer of gratitude, grateful for even the slightest reprieve from any torment.
We laughed during family pictures and had fun being together and laughed as Hayden and Brooklyn acted like teenagers together. I smiled, and made a mental note at how grateful I was for all those in Hayden's life. I felt a wave of peace. I tried to just stay in the moment without focusing on the problems and the future. And although, I didn't last long because of the horrible throbbing of my foot and incoming migraine, I still thoroughly enjoyed each moment with my husband, son, sister and niece. I took a deep breath and finally began to smile and enjoy myself.
Troy and Jodi, lovingly and generously, took us out to dinner to a Japanese restaurant and Troy convinced me to try sushi and I liked it. Life felt weird and peaceful and absolutely drained all at the same time. I came home ready for bed. I was beyond exhausted and prayed I could find some relief in sleep. As life often does, relief doesn't come how we want or expect, but in surprising ways. I didn't sleep at all, but found comfort as Talmage and Brigham each snuggled up beside me in Brooklyn's bed. I soaked in their joy and love and thanked God for these precious boys.
Sunday brought unbearable heartache and sadness and utter and complete despair. I cried or rather sobbed the entire day. Nothing could console my broken heart. I looked in the mirror and said aloud, "How do I tell my son that the insurance company would rather me die than pay for treatment or help. I am deemed unfit to live. Not worth saving. Not worth it." I will admit, I was at an entirely new level of low.
I couldn't go home and face this alone. I needed my sister and the distraction of Brooklyn, Brigham and Talmage. I needed to have Hayden focused on cousins, not me. Monday was again a blur of just trying to contain my emotions without completely falling apart.
Needless to say, we are just frantically trying to keep our heads above water. Tears fall freely and often. We struggle to talk about it, as both of us are trying to cope and listen for any guidance from the Holy Ghost and Savior. We do not know where to turn, what the options will be or what the future holds.
What we do know is that our Savior comforts us in our trials. He does not leave us nor forget us. He has sent His comforter to protect our hearts and minds from the fiery darts the adversary is shooting at this time. I know He is with me on this journey. I know somehow and someway, He will help us walk the path that is mine to walk. Thomas and I are pleaded for answers, searching anywhere for options and handing all of it to our Savior to sort out and help guide us with where to turn next. We would be grateful for all prayers in our behalf as we get ready to face some very complex and scary decisions.
That night brought on another sleepless night filled with excruciating pain and unbearable sadness.
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