Part 2 – Our Daughter Dianna’s Journey
An unexpected journey fraught with challenge and infused with joy…
Written by Sandra, with Dianna’s permission for a fundraiser – Katie’s Run.
In the hours immediately following Dianna’s brain surgery we, her parents, saw glimpses of communication from her. While Dianna was in the ICU, we hung onto something as simple as Dianna wiggling her toes. This small gesture told us that she was asking for a foot massage. This meant she was communicating! What a flood of relief filled my whole being.
In the weeks following surgery I was amazed at Dianna’s recovery. Two weeks later, she attended her brother’s grade 12 Grad dinner with the family. She was tired, but looked great!! As a mom, I was grateful to see some sense of normalcy return to our lives.
One month later Dianna wrote her final exams in Grade 10, and did well!! This was remarkable!
Six weeks later however, things began to change. We were camping together as a family and Dianna had a case of the hiccups. The only problem was, they wouldn’t stop. All day long, all night long, for days on end, Dianna hiccupped. Sleep was hard to come by and she was absolutely exhausted. I was weary just watching her. Who knew hiccups could be so distressing? A visit to her pediatrician and subsequent visits to different neurologists confirmed that these hiccups were actually tics. Dianna began a new and unexpected journey with both verbal and motor tics. Words would fly out of her mouth, her arms would fly up in the air, her whole body would move suddenly. Indeed, this was unexpected.
I experienced a myriad of emotions. The joy of seeing my daughter seizure free, was overshadowed with this new development of tics. To trade seizures for tics had not even been on our radar!
For over three years after surgery Dianna was completely seizure free.
However, on an unforgettable day in October, 2011, three and a half years post surgery, her seizures returned. I picked Dianna up from her morning job, and she told me she had a seizure that morning. Once we got home, another seizure came. By early afternoon she had had four seizures, and we were off to the nearest hospital Emergency. While we waiting in the waiting room, seizure after seizure came on. One seizure rolled into the next. Dianna was admitted, and medicines were adjusted. A bed was prepared with her, with flannel bedsheets wrapped around the bedrails, on both sides of the bed to protect her as she seized. Thankfully though, with adjustments in medicine, the seizures stopped.
I had absolutely no idea what to expect, and was very worried. I remember standing in her hospital room, overlooking the city of Calgary from her window, and contemplating. What was the future going to look like? Was Dianna now going to face seizures for the rest of her life? We didn’t know what part of her brain these seizures were from. Having already had brain surgery with a large potion of her right side removed, we know that there are limits as to what can be done through surgery in the future. What if the medicine fails again? My mother’s heart was very heavy with this new onslaught of seizures. How grateful I was that they came under control again. Thank God!!
That was five years ago. I wish we could say that the seizures and the tics are all gone, along with Dianna’s fatigue. But this isn’t fully the case. Every few months a seizure presents itself. Tics happen involuntarily (but are much less often). Fatigue is constant. We will probably always have questions. Why seizures? Why tics? Why fatigue? The truth is, we don’t know why. We wish it wasn’t this way. But we are so impressed with the grace in which Dianna accepts it all.
In my own way, as a mother, I have come to peace with all of this. I have prayed, and I have begged God to take this away, and for all of my days I will continue to pray. But I also trust, and I have peace, and I am thankful for each seizure free day. I choose joy, and I count myself blessed to be Dianna’s mom!