Lyme Will not define us.

Before Lyme hijacked our lives................

A daily routine includes, getting up preparing my 5 year old a 100% gluten free lunch, getting all the kids up and ready for the day, then preparing a gluten free snack, gluten free breakfast and then  1/4 teaspoon of this medicine, a 1/2 a pill of that one, another teaspoon of this one, and 2 ml of that one,.. followed by water, dishes, book bags and they are out the door until 3 o'clock when we start the medicine again. Strict diet, lots of googling and cooking and dishes, It doesn't end until our heads hit the pillow, then 7 hours later we start over. We do mental checks of calendars, appointments and bloodwork, new prescriptions and changing prescriptions.. Matter of fact the pharmacist knows me on a first name basis by now. It's hard work. Lyme disease isn't an easy fix. But I remember back.. It wasn't always like this.

December 2013 changed everything. We were chugging through life. Three beautiful, healthy kids. My husband settling into a new career, me working full time as a stay at home mom. Monotonous of daily life happily filling our tanks. One morning my five year old Emy woke up with a fever. I gave her some meds, a wash rag on her head and turned on cartoons. You know, the normal remedy for a "sick day" but by noon when I realized the medicine wasn't working and she was regressing and quickly. Her fever shot up to 105, she was limp, lifeless and I just had a feeling in the pit of my stomach.. Something was seriously wrong. 

I don't like to elaborate on the details of the first doctors visit and the many after that didn't give us answers. We spent close to 40 agonizing days of no answers, she began getting migraines, nose bleeds,.. She had changed. She wasn't the same little girl. She was angry, aggressive. I'd never seen this in her. And it was frightening for me. There was blood work, enough to where at 5 she was hardly flinching at getting it drawn.. A hosptial stay, IVs, medication "guessing" diagnoses at what could be wrong... finally we drove 8 hours and 20 minutes to see a doctor who laid it all on the table with confidence. Lyme disease. Definite. With 2 co-infections. Which meant in short. She was very sick. She had failed numerous neurological exams. The infection had spread. It was severe. It was chronic...., Chronic,....that 7 letter word hits you in an unexpected way as a parent... It was painful, confusing and hard to hear. It was also relieving. We had answers. We had a plan. We had hope. 

Here are some pictures of the early days of her illness. 

I hardly ever got to see her beautiful smiles anymore.. Sunshine made her life miserable she was so photophobic. 

Her illness stumped even the best children's hosptial. Her blood work wasn't normal. She had elevated liver enzymes, they couldn't pinpoint it. 

Her "friends" did make the hosptial stay a little better .... 

The "thumbs up" it became her trademark of getting better. We said from day one we would fight this and we would win. 

Her specialist had a great a plan. It was a long term medication treatment. To treat all three infections. To push them Into remission. This wasn't a cure to eradicate the disease because there wasn't one. It was hope to live a halfway normal life without so much pain, with only fear of flare ups and not a constant fight on a daily basis against the disease and all the damage it does. 

He said she needed to be 100% gluten free. Which would help her fight. That wasn't too hard to embrace since I needed to be gluten free (even though I wasn't living it) due to autoimmune disorders.. It's different though being told that for your child than as an adult. It meant no indulging at class parties, no sack lunches with your friends. It means being very careful, having to ask before you chomp down on a cookie at Halloween, or have that slice of cake at a friends birthday party. You can only have those special treats prepared especially for you... You no longer can be part of the "crowd" 

It's been around 2 months since her diagnosis and she began treatment. I'm amazed by how much she has improved. How much of that little girl is returning to me.  It's not gone. I still see lingering lyme in her lazy eye. Or in her headaches that only come once every couple weeks now. I still see lyme here and there when her body overreacts to something it doesn't like and she suffers. But I see smiles now. I hear laughter. I see her spinning around like a ballerina in the bright sunshine without crying the light is too bright. The anger has diminished, and now is closer to that normal in a frustrated five year old. We haven't won, but we are fighting. And we are winning. I see it in every milestone we reach. 

Until next time,

The Modest Mom

All rights to photopgrahy below are given and recognized to

www.carriepalmerphotography.com 

Who helped us capture this beautiful picture of fighting Lyme disease!!