DeAnne LeBlanc is a Lyme Warrior, fighting both for herself and her daughter. Her words are powerful and piercing. A mother’s immense love and excruciating pain is felt in each of her words. Read on as she shares a bit of their story.
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’re not. He makes himself comfy in your healthy body and quickly begins turning it into a toxic bacterial wasteland that creeps into your organs, joints and 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, severe pain, arthritis, ringing in ears, migraines, eye pain, facial tics, breathing problems, heart murmurs and palpitations, muscle twitching, and muscle weakness are among the list of the many symptoms that Late Stage and Congenital Lyme patients deal with. This is only a small part of the list. On average most patients have at least 20+ symptoms and these are all usually going on at the same time or they migrate on an ongoing basis. It is simply not living.
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 now 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 and I hadn’t put it together. 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, in fact I think she has stopped trying. 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…(continue here).