Holding your own child while she has a seizure feels like holding your own heart as it beats outside of your body. Juniper's seizures started when she was just 6 weeks old. I'll never forget the first time I experienced one of her seizures. I was in our small brick ranch in Decatur, Georgia feeding her Similac Sensitive formula and dodging her reflux, when her whole body began to twitch rhythmically like a heartbeat. Her eyes fixated on our drywall ceiling, her arms jumping forward with the weight of her small body, her hands clinched into little fists.
I would later refer to Juniper as our little fighter because she always kept her fists clenched, and because she endured more trips to the emergency room, more EEGs, EKGs and MRIs, more needles, more pain in her first few months of life than I had in my entire 34 years before she was born.
An email from our pediatic neurologist at Children's Healthcare of Atlanta with the subject of "Chromosomal Micro Array Results" began with "Results: ABNORMAL FindingDeletion of 1q21.1 to 1q21.2 and partial deletion of STXBP1." The email then described what it called "features" to include microcephaly, intellectual disability, dysmorphic facies, eye abnormalities, congenital heart defects, genitourinary anomalies, skeletal malformations, seizures, autism spectrum disorders, attention deficit hyperactivity, early epileptic encephalopathy, developmental delay, ataxia, hypotonia among other features.
Even after hearing all this verbally from the neurologist, the email felt more painful. It just felt more permanent I guess. And it was permanent. And there was nothing I could do to change it. If you are a medical professional you know that this diagnosis is very serious. If you work in the technology industry like me, you are wondering why they call these features. Features are supposed to be good things, and all of this seemed so "bad." In technology, we call bad things Defects.
One of the first things I had to do to cope with this news was to stop thinking about it all as "bad." I tried to reject words like "Defect," "Disorder," and "Disease" and use words like "Different." Transcending societal norms became an crucial part of accepting reality for me, which I'll discuss more later.
When I first saw my little girl having a seizure I remember feeling like one does when staring at a clock. Her tiny limbs tapping at the air like second hands. Each second slowing down to strip the cloak of movement and show its real self. When you stare at a clock and watch the second hand, the world around you blurs, your perception of time bends, and everything stops moving. That's how it felt: like I was suspended in time, and I didn't want to move forward. I didn't want to have to move to the next second. I wanted time to stop and let me sit there quietly breathing while Juniper lie still in my arms.
But time would march on forward - and along with it would march a parade of medical professionals, altruists, assholes and academics to help us look for answers. I learn new things from my experience everyday and I have realized that I need to share my thoughts and experiences, prompting me to start this blog.
In this blog I'll write about 1) what I have experienced as a parent, 2) what I have learned about psychologically processing my experience and 3) what helpful resources I have found for parents (particularly those who have kids with special needs).
If you are new to parenting - especially if you have multiples or a child with differences - you may feel that your life is collapsing around you. But you will get your life back and this blog will tell you how.