Go on. Admit it. You’ve missed me….
To those who have followed my journey for nearly four years, I owe an explanation for my absence here at A Broken Crayon.
First, I thought I’d take a little break from writing, advocating and researching. Summer began early with both of my daughters out of school before June even began. I wanted to just be with them, truly with them. Not distracted by social media or formulating my next blog post. This summer more than any before I was aware of just how much my girls had grown up in the last year. The realization that I only have five more summers with Gracie created a sense of urgency inside me.
I needed to be in the moment because those moments are happening faster and faster and much too soon there won’t be time for all the wonderment summer brings.
So I took a break from all things me and instead dedicated every minute to all things family. In mid-June, we vacationed with my husband’s family in Northern Neck, Virginia. Without a bar of cell service, life slowed and our children returned to us. We sat in the breezeway on those humid June evenings, talking and laughing while lightning bugs created magic all around and moonlight glistened on the pond. The world beyond us cease to exist. I found I was less anxious and my resting heart rate dropped twenty beats. I could never forget my ongoing battle with Lyme disease; after all, there is always pain and fatigue. I had brought my treatments, supplements, and medicine with me and I stuck with my regimen every day. But for a little while, I was able to relax, to relish the beautiful people in my life and to appreciate our magical surroundings.
Gracie turned 13 during this trip. I’m still in a bit of shock that my sweet girl is now a teenager. It was a quiet birthday. No fancy party or fan fare. She spent nearly all of the daylight hours on her birthday lying in a lush green garden reading the Red Queen series. Could you imagine a more perfect place to escape to another world?
This was just one of several adventures over the summer. After Northern Neck, we drove to Ocean City, Maryland for the requisite “trip to the beach.” This was our first trip with a dog, and it was immensely better than I’d feared. Our new chocolate Lab, Miley, was darn near perfect. She was a much better traveler than Izzi, who asked “how much longer” every fifteen minutes.
Upon reaching the beach, we quickly learned that Miley is terrified of the ocean. Give that pup creeks and swimming holes any day, but you can keep the ocean. We laughed at Miley’s desire to keep her human, Gracie, from the evil waves. Eventually, Miley and I rested far from the water while John and the girls frolicked. Aside from using my cell phone to take pictures, I soaked up the sunshine and the moment, knowing both are fleeting.
In July we made our annual pilgrimage to Smoke Hole, West Virginia for what my husband fondly refers to as The Whiston Invitational. It is five days of no cell service (yet again) or electricity, camping with family and friends, floating or kayaking down the river, and eating more deep fried food than you’d find at a state fair. It’s a challenging week for me physically, so I’m cautious to rest often, skip out on a few floats, and crawl onto my air mattress early. There are emotional challenges as well. It’s the scene of the crime, the place I was bitten and infected with Lyme disease years ago. Yet on that same day, it was also the scene of the greatest day of my life, the day I married my husband and best friend.
Another first for us on this trip, we took more dogs than children. I was nervous about this potentially disasterous lapse in sanity, but it turned out to be a great time for everyone. Our 110 lb. gentle giant, a white Lab named Turner, absolutely loved our afternoon floats. He and Grey, my son’s black Lab, swam the entire river, sometimes multiple times a day. Watching them so skillfully master the water reminded me yet again that dogs are so much better than us. Their natural instincts and overall goodness is unparalleled in even the best humans. Our puppies –a three month old yellow Lab, Marley Jo (from Mojo’s litter) and four month old Miley –enjoyed the water, but they preferred to float in the rafts with the kids. It was fun watching Gracie prepare to go off the rope swing while surrounded by all colors of fur babies, each surveying with the eager protectiveness typical of Labradors.
This summer we also made major decisions. After many, many prayers, we felt it necessary to transfer the girls from the only school they’ve ever known. Change is difficult for me. It hasn’t always been. Before I was sick, I thrived on change. I was that person who embraced new trends in education, willing to try nontraditional strategies and to do whatever it took to help my students be successful. Now change throttles my anxiety and feeds my disease. I cling to the old, craving convenience and consistency in my world of unreliable health and chronic pain. My chest tightens at the mere thought of new environments and people.
But God made His desires for our family very clear. We were ready to make this transition to public school. Saying goodbye to the small private school that had for years felt like family, like my healing place, was difficult. Sometimes it’s easier to stick with what we know, even if it isn’t the right fit anymore, than to jump into something unknown and scary.
But jump we did …in more ways than one.
Gracie and one of her best friends from her private school made the decision to be baptized together, to be bound forever in this special day of publicly dedicating their lives to Jesus. The ceremony was quick, simple, and beautiful. Gracie wore her Praise House with Mrs. Kraus t-shirt, knowing how proud her beloved teacher would have been of both her and Emma.
We enrolled Gracie in our local middle school, and eventually we were able to enroll Izzi in the elementary school closest to John’s employment. Around this same time, John accepted the principal position at our county high school. After a decade as the assistant principal in the same school, this was the logical move for him, and I was happy for and proud of him. Logically. But I was also filled with fear. New schools, new job, new responsibilities. Too many changes too quickly.
On top of this, Gracie made the brave choice to try out for the cheerleading squad at her new school. She announced this decision towards the end of June, and my heart immediately sank for her. Gracie hadn’t participated in gymnastics for four years. It was one of the activities we had to let go when I became ill. With my sons very active in high school sports, there weren’t enough hands on deck to get Gracie to gymnastics with me out of commission. I explained to Gracie that most of the girls trying out have spent the last four or more years dedicated to the sport. It would be nearly impossible to get her skill level where they need to be in just one month. I even suggested other fall sports which generally do not have the number of competitors and therefore few, if any, players are cut from those teams.
But Gracie was undeterred. She wanted to be a cheerleader and was willing to put in the work to make it happen. So most of July was spent in gymnastics class about an hour from home. Her work ethic was unbelievable. She sweat through her clothing nearly every single practice. She quickly got her round-off back handspring. Within weeks, she could do consecutive back handsprings and was focusing on her back tuck. We went to private lessons. She flipped everywhere she went –on my parents’ trampoline, into the swimming pool, in the aisles at Walmart. By tryouts, Gracie was able to do her tuck. Her progress in one month was astounding.
My prayer is that this child goes after everything she wants in life with the same ferocity and confidence she did cheerleading this summer. I am in awe of her.
Of course, she made the team.
So to put all this rambling together, I have two children in new schools with new teachers and new friends. Gracie has cheerleading practice almost everyday. Both attend gymnastics classes an hour away. Izzi continues to take horse riding lessons weekly. John is now the principal at LCHS and has after-school activities, from sports to BOE meetings, nearly every weekday.
Hello, change after change after change.
What initially was intended as a short break to focus on my girls turned into a three-month blogging hiatus. It was no surprise when I relapsed the first week of school. Stress is my biggest trigger, and my body simply couldn’t handle it. Too much too fast. I remember collapsing to the floor in the middle of a booster meeting. Everything was too much. The air too thick and humid, too many new faces, too many questions, too much walking. The words around me became distorted and I just needed to escape.
I managed to push through for a couple weeks, resting during the day and running the girls every evening. Then came several dark, dark days. I got lost on my way to my own home. I couldn’t remember how to use my cell phone. I grasped for words during conversations. I lost entire chunks of time, including my baby girl’s 8th birthday. Completely gone. The darkest day. The kind that make me question any progress I’ve made. The days I ask John over and over to tell me I’ll get better. To remind me the light will return if I just keep fighting.
The cruelest part of Lyme disease is the false sense of security she lulls me into, when I think I am getting better and I begin to hope for the future she stole from me. I might go days feeling moderately alive again. Sure, there’s still pain, but it’s been so much worse before. I think I could live with this, like this. Before I even realize it, I’m thinking….maybe I’ll finally repaint the kitchen. Maybe I’ll take that workshop and get serious about writing my book. Maybe, just maybe, I can go back to teaching someday.
Then she rips it all away. There are no good days. Only bad days and even worse days. The pain cripples me. My thoughts are jumbled, broken like my body. How could I have ever hoped for someday again? How was that possible just days ago?
Lyme swallows your brave and leaves you hollow inside. You are at once emotionally numb and physically raw.
You don’t dare to hope. You only need to get through, to survive this day, to breathe.
Yes, breathing becomes your focus. It is all you can do.
In. Out. In. Out.
Until the light returns.
And somehow it does. The IV and oral antibiotics do what they are supposed to do. For a few days, I wonder if the treatment will kill me or the Lyme disease itself, but eventually the light breaks through and I become me again.
Whoever this me is now.
Thankfully, we have survived this health crisis, and my family seems happy. Busy but happy. Izzi is thriving with her new teachers and asks every night if she can read to me. Her ability and confidence are soaring. Gracie has finally adjusted to life without school uniforms. I think her greatest joy might be the simple permission to wear flip-flops daily. She, too, has transitioned beautifully. My daughters’ courage continually inspires me. With grace, they braved so many unknowns and were unshaken by the changes.
I am taking life hour by hour. It’s just been in the last week that my cognitive abilities have returned. I can read and write again, and for those simple gifts, I am grateful. I don’t dare to hope for more than today. Like we did this summer, I try only to be in this moment. Only this specific one because the next might be too much.
My goal is to just be here now.
To be the best me possible right now.
That is all I can do, and it must be enough.
If I’m completely honest, I do still maintain hope, in very small doses and usually kept in secret. I want to meet you here at A Broken Crayon at least twice a week. With all that I am, I know it is God’s will for me to share my story, our story. I was designed to create, whether that be painting and crafting or composing and publishing, for me to even begin to heal emotionally, I must create. Please pray with me that God will allow me that one small olive branch as I fight to return to a life that is almost unrecognizable to the one before the fateful day.
I pray for peace that this is enough, that the mommy guilt threatening to overwhelm me stays at arm’s length, that my energy gradually returns allowing me to be an active part of my children’s lives again. I long for more good days than bad and light even on the darkest ones.
These are my prayers and my quiet, terrifying hopes.
And for right now, I am content just to be with my growing babies.
They deserve so much more than I can physically give them, but they have 100% of my adoration, pride, and faith. My story is not just about what God is teaching me through these trials. Often I believe it’s less about me and more about my children. They’ve learned compassion, empathy, disappointment, flexibility, courage to hope, how to pray, how to continue to believe when His answer to my healing is repeatedly no.
They are going to be wonderful little humans, maybe even right up there with the pure goodness of our Labs.
That is certainly enough.
Keep coloring, my friends. I hope to write again soon.