Life After Stroke: Mia, Perinatal Stroke

Most people are surprised when I share that my daughter, Mia, had a stroke at birth. She’s almost 9 years old and plays sports, including ice hockey (loves goalie), soccer, and lacrosse. She swims, bikes, climbs trees, hikes, fights with her sister, builds with Legos, and she’s bilingual and biliterate, attending a school that teaches in both Spanish and English.

When Mia was just forty-eight hours old, the hospital pediatrician told me that my baby was having seizures. She was transferred alone, with an emergency medical team of four, to a larger hospital for more testing. As a single mom, my sister who had been my primary support during the birth was at home caring for my older daughter, then almost 2.5 years old and wondering where her baby sister was. A friend had just brought me takeout dinner when I received the call from the neonatologist with the results of the MRI: ischemic stroke, non-hemorrhagic, no midline shift.

Prior to becoming a mom on my own, I had studied Feldenkrais for more than a decade; it’s a movement-based approach to learning that helped me heal an intractable shoulder injury. I had a successful career as a software engineer and manager. Studying movement was a hobby that I used for self-care. That all shifted when I received Mia’s diagnosis. I immediately knew that my knowledge and contacts with nervous-system experts would be essential to supporting her development.

Even when Mia was still in the NICU, I started to notice that she preferred to breastfeed on one side. I called one of my Feldenkrais colleagues to get tips for how to organize her head, neck, and body, to make it more comfortable for her to feed on both sides. I learned to sandwich her affected right arm between my body and hers when I was feeding her. And as she grew, I instructed her daycare providers to do the same. That was one of many ways that I helped her wake up to sensation on her affected right arm. Mia had several series of intensive movement lessons when she was an infant, toddler, and preschooler. Every time she was coming through a growth spurt, or showing signs of bias or uneven development, she’d go for 2-3 days of lessons with practitioners skilled in working with children with motor challenges. As a result, she was able to stay on track developmentally.

I fostered Mia’s independence with a variety of experiences and equipment around the house, and by giving her time to solve problems on her own. Mia always was keen to keep up with her big sister Zoe, so that was an excellent form of motivation and also modeling as Mia would study and observe what Zoe did and then try it herself. Mia also received services through Early Intervention and then the school system through Physical Therapy and Occupational Therapy up until she was in first grade. We did a home-based constraint therapy program starting when she was twelve months old to help her develop functional use of her right hand and arm.

As I continued to work full time while solo parenting Mia and Zoe, it often felt like I had three jobs: mom, software engineer, and therapist/advocate. Cumulative overload led to fairly acute burnout for me in 2014. Over the past four years, with both of my daughters thriving, I returned my focus to self-care. Ultimately, I decided that I needed to change careers. My passion for supporting my daughters’ development and my longstanding interest in motor development and rewiring the brain are at the heart of what I want to do. I’m framing the current year as a sabbatical to explore a combination of ventures including a private practice as a movement and nervous system educator, collaborating with Mia’s neurologist, and further training in trauma-informed approaches to working with children and families.

When Mia was newly diagnosed, I learned all I could to support her recovery. And, I felt grateful to already be versed in the language of the nervous system. But, I had no idea how much my own career interests and life would shift through the journey of parenting my stroke survivor.

You can read more about Mia on her mom’s blog Mara Yale.

 

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