For the past few years while suffering the pain, fatigue and never ending symptoms of the plague that is tick borne disease, I have kept a little journal on my phone of things my girls have said to me.
I read through them tonight and had a bit of break down. Out of no where, the reality of it all – what has become my normal – smacked me right in the face. How is this my life? How did I get here?
After much internal debate (for many various reasons for and against) I have finally decided to post some of them here. I think the honest and beautiful sentiments of a child capture the reality of how life has been for us for the past few years and highlight the true nature of this insidious disease.
For those who still can’t quite understand invisible illnesses, and maybe don’t believe that Lyme is debilitating, I think this will explain it simply through the eyes of a child.
This is raw and real and painful for me to even type. And yet, it came from the mouths of my two young girls who just want their mama to be well. Imagine hearing your own children say things like this to you on a regular basis. They should never have to think these things and a mother shouldn’t ever hear this kind of worry and sadness in her children’s voices.
“I’m so glad to see you’re eating today mommy.” Cammie (7 yrs)
I was crying in pain one morning and Chloe began to pat and rub my back –
“It’s ok, Mommy. Everything will be alright. I promise.”
“Where are you hurting? I want to fix it for you.”
“I’m happy you aren’t sleeping right now so that we can watch Scooby together. Yesterday, you slept through the good parts.” Cammie (age 6)
“I wish I could take it away, mommy.” Chloe (9 yrs)
“Am I going to have to get a needle in my chest someday, too?” Cammie, after her blood test revealed that she also has Lyme disease.
During my mostly bedridden years, I apologized one night to the girls because we weren’t able to do the fun outing I had planned. I told them I was sorry that I wasn’t the fun, energetic mommy they used to have. Cammie answered, “It’s ok. I know it’s not you, it’s the Lyme. I just love lying next to you when you’re sleeping.”
After a long hug, Chloe told me that I smelled like a hospital and she was sorry the medicine made me so smelly.
“I know. You’re just too tired to play with me. You’re always too tired.”
Chloe to Cammie one morning when they thought I was sleeping, “Don’t be loud, Cammie. Mommy needs her rest. Her body is fighting hard to get better. She needs a lot of sleep to do that.”
“You don’t have to pick up my shoes mommy, I know that makes you out of breath sometimes.”
Written in school, an acrostic poem for me for Mother’s Day –
“M” : “Mornings are hard for her”