My coping skill is writing, so, over the next one to two years, if you so choose, you all can walk alongside us, pray for our family, as our family walks along side someone we love while they receive treatment for Chronic Central Nervous Lyme Disease. With my daughters permission, the informational journey starts right now & will continue on my Hills of Mercy blog.
In the early 2000's, we had moved from the heart of Worcester, MA, where our house practically sat on the campus of Worcester State College, to the woods of central MA where we were blessed with a couple of acres smack in the middle of no where. When the weather was nice, we were outside a lot, hiking, picking blackberries in the woods behind our house, walking Ty-Ty our grumpy, oversized, purebred schitzu, down country roads. To make the walks exciting for the kids, Rich had proclaimed the road across from our house "swamp monster road" and off we would go, in search of the nonexistent central Mass swamp monster he had made up for their entertainment.
One day, when Kyra was 4, I noticed a weird circle on her back, a bullseye, right at the top of her spine. Our friend was a paramedic & he said he thought it might be ringworm. For several days I treated it as such, but it didn't go away. So I took her to our small town pediatrician & he immediately knew, she had Lyme Disease due to a tick bite.
A little history about Lyme disease for those unaware...during the Korean War, our government used a lab in Lyme, CT to inject ticks with parasites that they would later plan on releasing in Korea, but, of course, the ticks escaped the lab & the parasites began to enter the woods of New England via the ticks . The goal was for the parasites to enter the nervous system through a tick bite. For the longest time, Lyme Disease was very centered around New England, but now it's everywhere, though more rare in places like California, where we are now.
Shortly after the diagnosis, one side of her face became paralyzed & we started treatment immediately. To this day, her little preschool picture hangs on our Christmas tree each year, a childhood decoration, one side of her face drooping. What was more shocking than the paralysis, however, was the extreme joint pain. Always a tough child with a high pain threshold, she would wail at the excruciating pain, mostly behind her knees. Up to this point in her life, she was always a daddy's girl. Had you seen her, she was probably riding on her daddy's shoulders. But those shoulder rides came to an abrupt stop, as, her legs dangling over his shoulders would hurt her the most. I have never heard her cry so hard or so much. About this time the horrible nightmares started as well.
As the doctor began a 3 week antibiotic regimen, the pain ever so slowly began to subside. Her beautiful little face went back to normal (in the attached photo it is almost healed). Along the way someone had mentioned to us how serious Lyme disease was, so we drove to Boston multiple times for second opinions & always made sure our Boston doctors were on the same page as our wonderful hometown doctor.
As I tell this story I realize I have to go back to say, during this time, not only was our marriage falling apart, but three years prior Rich had almost died at the hands of a doctor who made a mighty mistake & then lied to us about it. I've written many times about both of these experiences, but, as we began this Lyme disease process, we were already in a stressful place marriage wise & extremely suspicious of doctors in general. Both of these things would eventually play a part in the future of this story and the mom guilt I still carry to this day.
After the three week treatment protocol was done, all doctors involved assured us she was healed. How could we know? That was the major question on our minds. All answers pointed to the same thing...a spinal tap would show if all the parasites were gone. But a spinal tap on a four year old, we were told, came with a 25% chance of paralysis. Having just survived the hideous experience with my husband almost dying, we managed to decide together (during a time when my husband and I just speaking to one another was difficult) that we would trust the doctors opinions that she was healed and not risk the spinal tap. We were so stressed, we just couldn't risk anything else going wrong.
Life went on, and we miraculously survived the next couple of years that were full of stress due to the state of our marriage. But all that mattered to me was that Kyra was healed and our kids were safe and healthy. Or so we thought........
TODAY
On a recent plane ride to Oregon, I finished a book I had held onto for the last 3 years but never read. It's about a mother's journey helping her teenage daughter find a cure for her Lyme. I couldn't bring myself to read it all those years I had the book, because, at the time, Kyra was choosing not to seek treatment. But now that she has chosen a path to healing, I was able to open it up and dive into another mother's journey. The book was very well written and informative, so many similarities to what we have seen with Kyra, but it was missing something......Jesus was not a part of their story. But He IS our story. As I told Kyra that I thought the world needed to see a faith based Lyme journey, she graciously agreed that I could write it. This is only the beginning. To God be the glory!
No comments:
Post a Comment