Tag: Family

Never-Ending Hope

This unpublished post from 2019 is a snapshot of one of our darkest nights. Reading it now, I can see it was also the beginning of a journey that would forever change our lives and teach me that hope is not simply a feeling, but a decision.

This post was never published when it was originally written on October 26, 2019. Reading it again, it feels as though it happened a lifetime ago and yet, paradoxically, only yesterday. Little did I know then that we had found the physician who would become the first to help my daughter receive a proper diagnosis and treatment, allowing her several precious years of relief.

As I begin to write this blog it is only 7 pm and my daughter has already fallen asleep. She is exhausted; physically and mentally. In stark contrast to my daughter, my exhaustion is displayed in my inability to sleep and so my rant begins.

We found a new doctor to help her. He is an infectious disease specialist and a few hours’ drive away. He comes highly recommended and specializes in complex patients who have fallen through the cracks of the medical system.

Our first visit last week made us very hopeful and resulted in a multitude of tests, an impromptu visit ordered by him to the neurologist (resulting in more tests) and an intensely long drive home in the middle of the night in a nor’easter, which I was not expecting.

As the large raindrops pelted against my windshield and the wind gusts pushed my car around the highway like a bully with something to prove, my beautiful daughter fell asleep beside me in the passenger seat, curled up in the fetal position. I stole glances at her as often as I could safely pull my tired eyes from the flooded highway. I couldn’t remember the last time I had seen her perfectly still. I have not seen her not tic nor not move her body involuntarily in over a year. She moves so much these days she is in constant pain. Her tics prevent her from walking normally now. From leaning back and tensing, she has hurt her back and pulled the muscles in her neck. She is unable to attend a regular full day of high school because she can not walk forward normally any longer.

On her first visit, my daughter’s new doctor took her off of azithromycin and prescribed her cefdinir. She had taken Omnicef multiple times as an infant due to chronic ear infections and never had a problem with her stomach, from what I remembered. He stressed if she had any changes in her bowel movements to take her off of it immediately and call him. Well, that unfortunately was the case and he called me right back. His orders were to take her off antibiotics and come see him again over the weekend since her tics were becoming much more severe.

As we waited for the doctor visit, her tics are full body and constant. She is in pain. Her intrusive thoughts began again with a vengeance a few days ago. She tried to take a hot bath tonight to help relax her muscles and her mind, but she came into my bedroom tonight, wrapped in a towel, leaving a trail of water behind her, sobbing. Between sobs I can make out little of what she’s saying, but understand fully as we have been here before. “…I’m turning into her…” “…won’t leave me alone…” “… my mind is broken…”

My heart is broken for my daughter. I hold her in my arms and rock her as I did when she was a young child. I tell her she is safe and that I will never let anything hurt her, but the truth is that that is not entirely true. There is not much more I can do to help her. She is terrified as am I and we need help.

She is trapped in her own mind and trapped in her own body and both are betraying her. Neither of the two are working with her nor bring her happiness. She cannot walk, run, read, sit still, concentrate, have happy thoughts. She feels constant pain, shame, embarrassment, fear, anger, and hopelessness.

Well, I will be her hope. I will be her rock. I will love her like it’s my job…. because it is. I will never stop, never quit looking for answers. I will not take no for an answer. I will see this through until we find HER cure.

As I rocked my daughter in my arms that night, I made a promise to spend the rest of my life searching for answers if that’s what it took. She will never be alone in this fight and I will protect her with the fierceness of a mother bear protecting her cub.

The Beginning, Again

A reflective telling of the beginning of my family’s long journey through chronic illness, uncertainty, and unwavering love.

And here we go again.

I sat and stared at the blank page wondering to myself “Where do I begin…. again?” Do I start at present time with the latest ambulance rides and hospital stays or do I go back in time to symptom onset?

Common sense tells me the best place to start is always the beginning.

It was my daughter’s summer vacation between first and second grade. She had an energy and vibrancy that was hard to keep up with and could light up any room. She had more friends than she knew how to fit into a summer calendar. None of whom she knows any longer. Strange symptoms make estranged friends.

We had some time off and decided to pack up the car and head to Ocean City, Maryland. All we wanted was family time, ocean waves, and memories. Well, we certainly got the memories.

One rainy afternoon, while driving away from the beach, a sudden and rapid movement caught my eye from the backseat. “Something is wrong Momma”, my son said. I looked back and saw my daughter, buckled safely into her car seat violently whipping her head. I reached to her and she grabbed my hand as we made eye contact. All I could see was the fear in her eyes. I found myself speechless and all this sweet baby could muster was “I can’t stop.”

We immediately pulled over and I grabbed my little angel out of her car seat and I held her tightly to me. She wrapped her little arms and legs around me like a scared baby koala and as we stood on side of the road in the rain, I could feel her warm little breath on my neck start to relax. I could feel her soften in my arms and could feel her heartbeat slow. She settled down while we stood there and I started to think maybe what I thought I saw wasn’t what I saw. Any mother knows what I am talking about; that chronic second guessing we do to ourselves. Until we know better.

Sitting here writing this, remembering that moment that changed our lives almost two decades ago has made me break out into that familiar cold sweat that I have experienced hundreds of times over the years since then. That sick feeling in the pit of my stomach and the wave of chills that reaches my soul. The tears that fill my eyes uncontrollably. It is a fear of the unknown. A fear of lack of control. It is a fear of sickness and disease in my child. It is navigating a storm without a compass. It is eventually learning this will be a lifelong battle of searching and advocating and asking for things that the medical community denies exists and I will stand beside my daughter and wield a sword until my dying breath.

She never deserved this. We never deserved this. Yet here we are. Still fighting the fight. Again and again.