Lyme is a thief. It takes what it wants. It steals, pillages and wrecks lives. I have stood and watched helplessly as it has slowly eaten away at everything I love.
Lyme is: A destroyer. A monster. A bully. It is, quite literally – a parasite. It is, and always has been, a thief – of health, life, time, joy, childhood, experiences, jobs, love, talents, memories, happiness, friends, faith, family, homes…the list is endless.
The thief comes in and breaks down all that is good. He invades your space and makes you someone you are not. He makes himself comfy in your healthy body and quickly begins turning it into a toxic, bacterial wasteland that creeps inside organs, joints and even the brain, turning everything inside out and upside down.
Pain, confusion, fatigue, insomnia, memory loss, anxiety, panic attacks, rage episodes, tremors, paralysis, nerve damage, brain damage, speech problems, arthritis, tinnitus, migraines, eye pain, facial tics, breathing problems, heart murmurs, palpitations, muscle twitching, and muscle weakness are among the list of the many symptoms that Lyme patients endure. This is only a fraction of the symptoms. On average most patients have at least 20+ symptoms and they are usually going on at the same time or they migrate on an ongoing basis.
It is simply not living.
In the end, Lyme does what it pleases, regardless of how hard we fight back. And all this…even to a child.
My daughter is only 8 years old. Eight. This thief has stolen her ability for dance and cartwheels and playing pretend. But not her love for it…she just can’t do what she loves most of the time. She had to quit dance this year, her favorite thing to do. She just couldn’t keep up anymore. That is the purest form of torture and the worst part of this disease. It takes away your abilities and leaves you wanting to live. You still love what you love, you just can’t do it anymore. She is very smart and has never had problems in school, but she is struggling with foggy thinking and falling asleep in class. It has stolen much of her fun-loving personality and replaced it with moments of an anxious, angry, and scared little girl that I don’t recognize. It has changed her from a vivacious, energetic, happy child to a weakened, fatigued one who is consistently in pain, with chronic infections, swollen lymph nodes, fevers, stomach aches and an excessive need to sleep but once she falls asleep she wakes up throughout the night. She is always complaining of being tired.
I know the burden she carries all too well. There is an understanding, a silent mutual agreement. We do not need words. She knows that I know this path better than anyone else. When she is sick, I see the pain in her eyes. She doesn’t need to explain. Her body requires rest. I have been there and I feel her pain. She simply can’t keep going. She can’t explain why, but her body just won’t move or do the things she is asking of it. I get it, completely.
Last month, I noticed a small twitch on her face. Her eyes would squeeze tight over and over again. Her face tensed up. At first, I thought it was the light, maybe she was squinting to see something. But then I saw it again. And the next day. I hoped it was a problem with her eyes, so I took her to get her eyes tested but everything seemed normal. I stumbled on an article about congenital Lyme and the patient was a child who had facial tics. It hit me that this was what she was experiencing. I was seeing it, but not seeing it. This new annoyance was yet another symptom of neurological Lyme that was rearing it’s ugly head in my child’s life and I missed it.
She can’t control it. She doesn’t even realize she’s doing it. After our doctor confirmed that it was a neurological symptom of Lyme, I explained to her what was going on in her body and why she was having this strange thing happen to her, but she seemed to already have known. I hate it for her. I know the neurological signs mean we have to be more aggressive with treatment. Lack of treatment could lead to severe symptoms down the road.
I hear crying and screaming and suddenly realize it is my own voice. I don’t recognize it tonight. This is not right. My baby should be doing cartwheels! I want her to feel better and not just for a few days a month, or a few days but all the time! I look over at her. She is so pale and there are huge, dark circles under her eyes. It is frightening to think what lies beneath that fragile layer of skin. She is breathtakingly beautiful, but the beauty is covered with a thin sheet of sickness that is palpable. I can see and feel it all over her. Her body is wrecked with this wretched disease. I imagine the bacteria multiplying faster than we can kill it. I wonder what kind of long term damage it may be doing. Every time she complains of muscle soreness and joint pain, I think of the lack of a cure for chronic tick-borne diseases and how research is just beginning for new treatment options. How long she will suffer? How many more dreaded days and sleepless nights will she lie in pain with me holding her tiny body close to mine? I wonder if the disease will get worse as she gets older? Is anything we are doing going to help? Are we making the right decisions for treatment?
There are too many questions and not nearly enough answers.
What I know is that my daughter is chronically ill. It is hard on her and it is hard on our entire family. We are exhausted. Every day is a battle. Emotionally and physically. She can’t sleep, hates taking baths and brushing her teeth because everything is an assault on her senses. She fights us at every turn but she doesn’t even realize it.
She needs to be better. I want her doing cartwheels and hand stands in Target again. I want to see her eyes light up the way they used to. I want to watch her dance her heart out without falling, hurting or getting fatigued. I want her to sleep through the night and hold my hand for fun things, not from being scared or because she relates to my pain.
I want to see her doing what she loves to do, unlimited and free, with a body that works the way a healthy child’s body is supposed to work.
Daily, I trudge through stigma’s and backward glances in waiting rooms. I correct wrong information at every step, flip through millions of medical journals, articles and files, fill out all the paperwork (and more paperwork.) I have researched every tick-borne related case I can get my hands on. I read and read… and read some more. We find answers for me, which means more answers for her. Waiting rooms become our second home. Co-pays and mounting medical bills are the norm these days. Every extra dollar goes to pay for the specialists, infectious disease doctors, internists and specialists for the specialists. We find answers to our questions but some answers only lead to more questions. There are protocols and treatment plans, natural remedies, homeopathic treatments, medicine, and more medicine. Finally, a doctor who cares and who is helping both of us. I pray that my daughter is on the road to recovery but every day we learn more and keep fighting.
All I know for sure is that Lyme is a thief. Lyme is a bastard. Lyme steals life. It has stolen far too much from my life, and I will not let it steal my daughters joy, too.
I know God works all things together for good. I know He does. I know miracles happen every day. I know He can heal. I trust He can and I believe He could heal us both completely. I know all these good things, believe me… I’ve prayed them or cried them in the dark when I didn’t know if I would make it through the night. But miracles don’t always happen and things don’t work out how we think they should. Our minds are finite, our ways are not Gods ways.
So, when my 8 year-old looks at me with tears in her eyes and asks why God doesn’t heal her – when she knows that He can, because she’s heard that He is her healer, my breath catches in my throat and I give the only answer I know. God loves her and He will never leave her or forsake her. But I don’t know why He doesn’t heal her. I don’t know why kids die of cancer or why people are bullies or entire families die in car accidents. The way I reconcile my faith with tragedy, disease and hurt is to know that God is in control and this world does not get the final word, He does. It sounds cliché, I know. It’s hard to trust, but it’s all I have to hold on to when she’s crying in pain or having a Lyme/PANDAS episode. This world – and these diseases – do NOT get the final word – My God does.
Sometimes, all I can do is cry, hold her, and tell her that I hate this disease as much as she does, I really do. And so does Jesus. He hates it and He is here for her in the middle of it. Our Lord comforts us in our time of need and that is what we can cling to when nothing else makes sense. He will never leave us.
What I know right now is that Lyme is a thief and I will not be his victim anymore. I don’t want sickness in my life or in my daughter’s life. It’s taken enough from us, it has stolen too many days…no, it has stolen years.
Oh, God, please give us back the years the locusts have eaten. I am on my knees begging The Giver of all good things to give life back to my little girl and rid her body of disease. Give life where there is death. Kill this thief in his tracks.