They told us Cecily's tiny body jerks were not normal and that they were called infantile spasms. What? Ok. So how do we fix it? What does that mean? Is it common? How did she get it? Is she going to die? Is she going to have a shorter life? The questions raced. We felt desperate and hopeless.
"The onset of infantile spasms arrives typically within the first year of life, between 4-8 months."
Cecily was 7 months.
"The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs."
Yes, Cecily had started to do this.
"Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time and sometimes babies have several hundred spasms per day."
The list went on. It included a prognosis, side effects to the meds that Cecily would need (and utilizes today), and other stuff we needed to know. But I don't remember the details. I was in a fog. Brien absorbed it while I just sat clutching Cecily and thanking God that she was alive and that we would leave the hospital with our baby.
We thanked God that we caught it early! And with the great care of her medical team led by her neurologist, Dr. John Crawford, Cecily is becoming a poster child for infantile spasms. I hope her story gives other families hope, too. We have been told her EEG's are remarkable. There is no sign of seizures and she is making forward strides without too much regression. 365 seizure free days is a reason to celebrate!
We know that Infantile spasms usually stop by age five. We also know that they may be replaced by other seizure types. We can fill up our heads with what if's and worry ourselves silly but we made a decision a year ago to stay positive. The stats and the research are just more noise. We'll read it for knowledge and to educate ourselves, but it is not a guidebook for Cecily or how to parent her best. A medical journal, research study, a Doctor or a text-book prognosis will not define who Cecily is, what she will achieve, or who she will be. Her life has already influenced the lives of so many. And we know that she will continue to do so with or without seizures.
When Cecily left the hospital one year ago this week we had to say goodbye to Brien's Mom, Judith. We immediately took Cecily over to hospice where she was resting. She moved from holding court with family and friends, laughing and sharing stories, to a quiet, peaceful place. She was slowing slipping away. She was at peace, or so we thought. She had made us promise to work-hard, to love each other and to be good to each other. She was always inspiring us to be better and do more.
It was late but I had been unable to visit Judy for almost 4 days. We worried that Judy would know something was wrong. Nothing slipped by this woman! We placed Cecily Judith (she is named after her) in her arms and she awoke. She started to shake. She started to breathe heavy. We had hidden Cecily's medical challenges from Judy during her battle. We wanted only positive energy around her to give her strength. She stroked Cecily and moaned with delight. It was as if she knew and she was relieved to be holding her grandbaby again. They rested together in the bed for awhile. We have a picture of this moment but it is too painful and private to share. It reminds us that life goes on and that life is what you make it. We celebrate this week and the life and legacy of Judy. Onwards and Upwards!