The complications towards the end of my pregnancy made her cry even more monumental for me, even more reassuring that our beautiful girl was here. When I finally got to hold her and see those beautiful red curls, and soak in those 10 tiny toes and fingers- my little sunshine mixed with hurricane was here.
Those first weeks home were as beautiful as they were difficult. When most newborns sleep, our daughter had difficulty. Sleeping no more than a 2 hour stretch at a time. When most newborns build an appetite and yearn to eat, our daughter would eat for minutes at a time and then cry with frustration and uncomfortableness. We were at a loss with questions, but were assured with each of her appointments that she was healthy and this phase was all a part of being an infant.
As weeks turned into months and sleep and eating continued to prove difficult for her, we had many appointments. Many discussions on colic, acid reflux, allergies. Seeking support from lactation specialists, therapists trained in reflux, countless morning calls to her pediatrician to be seen that day after a horribly hard night. All attempts proved futile with the constant reassurance again, that she was healthy.
It was at her 6 month checkup with her pediatrician that he met my concern. Something was preventing her from using both hands. My concern of injury was met, but as well he added to my concern and shared the rare possibility of a stroke. Words that no matter how hard anyone tried to explain away the rarity of it, I couldn’t get it out of my mind. A child having a stroke, how is that even possible?
When the call finally came and the doctor shared the results from the MRI, there was nothing easy about the explanation. Her words came across in slow motion indicating that the results reflected an injury to her brain from a stroke. She wanted us to make an appointment to discuss face to face and go over her scans. The call left me in shock. The relief I had hoped to feel after months of knowing something was wrong, wasn’t there. Only new questions and huge emotions to struggle through.
She began to show us each scan from her MRI. Different angles and "slices" of images taken of my daughter’s brain. More terms, more uncertainty until she paused on one image. It was an image from my daughter’s chin up to the top of her head. It wasn’t the dark void in the image on my daughter’s right side of her brain that I focused on anymore. But now I could see the outline of her little face, the way her chubby cheeks left an outline even in an xray, and there she was.
In that moment among the fear and uncertainty, I was grounded. Brought back to my senses that no matter what we could come to learn about this diagnosis, it would not define my daughter. She was right there. My little sunshine mixed with hurricane.
I try to remind parents that regardless of what that MRI entailed or that diagnosis, they are words and pictures. They serve an undeniable purpose, but it has been my daughter who has defined her journey. Not knowing what walking would be like for her, she showed us all that she was going to walk without the aid of her walker. While Cerebral Palsy very much still affects her left side, she’s learning how to use her "helper hand" and often finds her own way to do two handed activities. Our new normal simply includes the weekly therapy appointments and teams of specialists to help her reach her greatest potential and that is ok. In fact, it’s better than ok, we are grateful to all the care we have found. It’s taken a village.
The reality that stroke in children is still viewed as rare is saddening. Countless families have firsthand experience with pediatric stroke and with stroke not being preventable in children, more families will receive that diagnosis with their child. More will come to learn how to navigate the emotions, the appointments and learn how to find their strength. My hope is they never have to do it alone and that they never lose sight that their child is going to move mountains, in their own way and in their own time.
To find out more about Pediatric stroke or to connect with other families in support please go to the family support section at pediatricstrokewarriors.org,