Part 1 – Our Daughter Dianna’s Journey
Dianna’s Journey with Seizures and Surgery
Written by Sandra with permission from Dianna, for a fundraiser – Katie’s Run
I am the mother of four and love each one dearly. My husband, Don, and I are so grateful for the privilege of raising two sons and two daughters.
When our daughter, Dianna, was seven years old, we were playing a game together, the two of us, when she started to tell me about this “funny” thing that happens in her head. Dianna told me all about it and declared that it doesn’t happen to anyone else! After listening for over an hour I was concerned enough that I knew we needed to visit the doctor. I suspected these were seizures. Upon visiting our family doctor, Dianna was sent for a CT scan, and I was told “not to worry” about these seizures. Well….that wasn’t so easy. During the CT scan the Radiologist studied the images, and spent so long on it, that I knew something wasn’t right.
Then, not long after, the phone call came from our doctor. It turned out the news wasn’t so good. Tuberous Sclerosis was suspected, but needed to be confirmed with more tests. The next several months were spent visiting specialists, going for MRIs, ultrasounds, and various tests. It was like a part time job managing and attending all these appointments.
Meanwhile, the seizures were growing in frequency and intensity, and quite honestly, it was getting scary. We knew this was serious.
After all the tests were done, it was confirmed that Dianna has tuberous sclerosis, and because of the tubers on her brain, she was having these seizures. This was a lot to take in as a mom. I cried and I prayed, and I wished I could take this away from my precious daughter. We had months of seeing specialists and years of trying to gain seizure control. My heart ached for my daughter. Dianna was brave through it all, and almost never complained. She would rest after a seizure, as needed, and then get back up as though nothing happened. She was brave and she had a special joy about her. Dealing with seizures became our new normal. Her medication was adjusted and was changed frequently in an effort to gain seizure control. However, control of seizures eluded us as they seemed to break through whatever medicine was tried.
Finally, when any hope of medicine controlling her seizures had vanished, we made the difficult decision to pursue brain surgery, at the recommendation of her neurologist. This was a challenging time in our lives as we weighed out our options, none of which were what we would have wished for. Dianna was in favor of moving ahead with the surgery, with hopes that this would be the answer we had been longing for. At the age of 16, Dianna had major brain surgery, removing her right temporal lobe and part of her occipital lobe. We prayed like never before that day, as we left her in the hands of the neurosurgeon. Those five hours seemed like an eternity. We prayed, we paced, we tried to read. We looked at the clock every five minutes. When the neurosurgeon finally came out, and we heard the words “it went well”, we were flooded with relief! We were even more relieved when, in ICU, Dianna was able to respond and show that she remembered things from before the surgery. An indication was as simple as Dianna wiggling her toes, which we knew meant that she wanted a foot rub. This seemingly tiny gesture spoke volumes to us. As a mother, I was deeply grateful to know that this part of our journey was over, with recovery ahead. Oh Lord, give me strength!
I will need to write part two for this story some day! Suffice it to say that Dianna is now 23 years old, and is almost seizure free. Every few months a seizure presents itself but compared to what they had been; this is a huge success.
As I reflect on it all, I know I would never have chosen this journey. Yet, so much has come out of it, and who we are today has been shaped by the challenges and the struggles that we have faced. The journey is not finished, but we walk forward in faith and hope.