This past year was a challenging year for my daughter Johanna. She’s lost some cognitive and motor abilities because of brain hemorrhages and seizures. It’s been a tough year for all of us.
As I was setting goals for this year, I included my daughter. For the past 22 years, my life is intertwined with hers as both mother and caregiver. I thought of the goals my daughter had when she was a child.
When she was eight years old, she told us that she wanted to grow up to become an anesthesiologist. It was a lofty goal, but understandable since she had already had nearly fifty brain surgeries by that time. At that young age, she understood that the anesthesiologists were the doctors who kept her safe and out of pain in the operating room. This was an important job and a career goal she was happy to pursue.
At the time, we thought it might be possible for her to develop stronger motor and cognitive skills that would allow her to live a more independent life. However, with every stride she made, brain hemorrhages and surgeries made it more difficult for her to progress. So we adjusted life along the way. Somewhere over the years, she stopped talking about becoming an anesthesiologist.
I also recall conversations we had about getting a driver’s license on the long drives to and from medical appointments. I clearly remember the day Johanna realized she wouldn’t ever learn to drive.
I knew she would never be able to drive because of the brain injuries and because she is legally blind. Johanna has no peripheral vision and her eyes bounce when she tries to track things. I knew if I told her all these things, she might not remember the details and get discouraged. But if she realized it herself, we could find a way to focus on the positive.
Johanna started the conversation saying, “Mom, when I can drive myself to these appointments, it will be easier for all of us.”
I was touched that she was thinking of the hours I spend in the car.
“Well, that’s true,” I explained. “But driving is harder than you think. Let me tell you what I am doing now as I’m driving.”
I explained how much is involved in the task of driving a car, bringing examples of quick decisions that have to be made – like whether to go through a yellow light or stop at an intersection, wondering if the person behind me would stop. As I explained the processes going on in my brain while I drive, she started to understand that driving wasn’t as easy as I make it look.
I also explained to her what my eyes were doing. Most of the time, I was looking ahead, occasionally glancing in the rear-view mirror to be sure there wasn’t a problem behind me, especially when I came to a stop. I was also using my side mirrors to change lanes quickly and safely.
After that conversation, Johanna came to her own conclusion that driving was too complicated (and boring) and she’d rather have fun in the passenger seat. We talked about how cool it was that she will always have someone by her side to help her navigate and explore the world and keep her safe.
Then we set our sights on what Jo could drive. Soon after, my husband put my daughter on the John Deere lawn tractor in our big backyard. With the cutting deck blades tucked inside the machine and my husband and I standing nearby, my daughter enjoyed driving in our own backyard. Johanna only hit the barn a few times. When I suggested to my husband that he move the barn, he taught Jo how to make a tighter turn.
Always focus on the positive.
Focusing on the positive side of things is probably the biggest strategy that has kept me sane and my daughter pretty happy throughout these crazy years. I am keenly aware of the challenges we face every day.
These days, seizures are a bigger part of the picture than they’ve been in years past. On any given day, I’m doing neurological assessments in the living room deciding if this a day to ride out symptoms or head to Manhattan for a brain MRI.
If we don’t focus on the positive, we crumble and head down a dark road that honestly takes too much time and energy.
Johanna has routines and a busy life working in our local community which helps to distract her from the pain and the struggles of living with a rare disease. And she still has goals and things she wants to achieve, even if it takes a lifetime.
Although becoming an anesthesiologist and driving a car, was omitted from her future goals, there is one goal that Johanna has never forgotten. She has a book she’s been meaning to write. Of course, we discussed it in the car- where we talk about all the important things in our lives.
I asked Jo if she still wanted to write a book and questioned her about the title. That morning, she was struggling with a headache. But when I mentioned the book, her whole demeanor changed and her blue eyes sparkled with intention.
“Yes. I do, Mom,” she replied. “And I still want to call it ‘Ordinary Miracles,’” Jo said with clarity and focus.
“Ok. Let’s do it,” I responded. “We can write it together. You know, lots of really famous people write books with someone else. The famous person gets the credit and the co-author’s name is added in little letters. How about that?”
With polite candor, my strong — yet tiny — daughter, crinkled up her nose and waved her unsteady hands as she replied, “Well actually, Mom, you could just be my publisher. I’ll write the book.”
I chuckled to myself with delight. Then we began our very serious discussions on how Johanna could write her book. As her publisher and an author myself, Johanna respected my suggestions. We scheduled one day a week to work on her book.
She also told me I could write the forward. LOL.
So far, we have the table of contents and chapter headings based on the word “miracle.” As her publisher (not a co-author), I interview Johanna and take dictation. I think it’s going to be a pretty cool book with lots of wisdom to share.
I am helping Jo to think about what and why she’s writing. We’ve clarified it’s not an autobiography. It’s a book about how to change perspective and see miracles in everyday life — “ordinary miracles.”
To that end, I asked her the proverbial question- “Do you see a glass half-full or half-empty?”
“Both,” she replied emphatically.
I decided to use a real-life example from her simply complicated life. “If your brain is in trouble because of a bleed and/or shunt malfunction which requires brain surgery – and you feel better after the surgery – was it a miracle or a smart doctor who fixed your brain?”
Johanna responded again: “Both.”
With wisdom beyond her years, Johanna explained that she believes it’s all a miracle — the science, the doctors and the good and bad things that happen in her life.
“I see God working through it all in ordinary miracles,” she stated.
We would all do well to think about how we view our life and this world. I’m looking at glasses half-full and half-empty and working on writing a great forward to this book.
There are miracles to record. Every. Day. Miracles. Ordinary Miracles.
The survival of local journalism depends on your support.
We are a small family-owned operation. You rely on us to stay informed, and we depend on you to make our work possible. Just a few dollars can help us continue to bring this important service to our community.
Support RiverheadLOCAL today.