When I was 20 weeks pregnant we found out that our daughter, Keira, had enlarged brain ventricles. As a first time mom, hearing this and not knowing what the outcome would be was beyond excruciating. As an experienced Special Educator, I knew the implications of a congenital brain condition—or at least I thought I did. I spent countless nights googling different variations of symptoms to see if I could find the diagnosis that most matched what we were seeing. It’s as if I thought that as soon as I figured out the exact gene causing these issues, all of our problems would be solved.
As time went on, my daughters’ diagnoses became more complicated and it became apparent that I would need to rethink my career path. My choice became clear in an instant and I followed my intuition. I chose to leave my full time school leadership position to move closer to family and to have more time to dedicate to my daughter. It was simultaneously frightening, emotional, exciting, and amazing. I felt like I was letting other people down, abandoning my career, and completely upending my life. My people pleasing tendencies, career centric lifestyle, and perfectionism were no longer in control and they haven’t been ever since.
We moved from the DC area to Massachusetts in January of last year- 2021. A multi state move with a 4 month old, cat, dog, and all our belongings in the middle of winter is no joke! But it was hands down the best decision I have ever made. Keira is 16 months old now. She is such a ray of light, reminding us to cherish every moment. She has Bilateral Perisylvian Polymicrogyria (BPP) and 18p– Deletion Syndrome.
Over this past year we have continued to gather a team of specialists at Boston Children’s Hospital to address Keira’s growing list of medical diagnoses. Then, on Keira’s 1st Birthday, we found out that she had BPP– which can cause a host of development issues, epilepsy, and other problems. About 7 weeks after this initial diagnosis of BPP, I got a call letting us know that her genetic testing results came back early. It was from this test that we found out she had a Chromosome 18p– Deletion. With these diagnoses, some kids never walk or talk. Other kids go on to lead a life with few challenges. Some kids eventually develop uncontrollable seizures. The spectrum of challenges is vast and the future is so uncertain.
Regardless of the challenges ahead, Keira will write her own story. And in fact, she already is. She has made so much progress! At 4-5 months old she could not lift her head up during tummy time for longer than a second. After going to her new pediatrician in MA, we were immediately referred to Early Intervention and Physical Therapy. Now, Keira does Speech Therapy, Early Intervention, and Physical Therapy. Keira LOVES people. She waves and smiles at everyone! We are using ASL, Picture Communication (PECS), an Augmentative + Alternative Communication (AAC) Device, and verbal language to communicate with her. She has learned new signs over the past couple of months– we are so excited for this! And she is even more excited to be understood. We just completed an AAC Evaluation which found that Keira would benefit from using an AAC device. The Speech Therapist recommended an iPad with the Proloquo2go. We attempted to go through insurance, but they would not cover it. We asked our family and friends to donate towards Keira’s talker and our GoFundMe was funded in less than 5 hours! We were blown away by everyone’s generosity.
Currently, Keira is crawling, standing, squatting, cruising along furniture– and just this past week took her first steps! She loves music, swim class, dancing, playing hide and seek with Dad, her dogs, Moana, Encanto, making everyone laugh, mac and cheese, blueberries, and snuggles with Mom! We have an Occupational Therapy Evaluation scheduled for this month to explore support around feeding, fine motor, and sensory concerns. We recently found out that Keira has Dysphagia, Laryngomalacia, and silent aspiration. She now drinks thickened liquids. Some months it feels like there is a new diagnosis every other day– more plateau’s than progress. And other days I am completely blown away by her growth.
I drove to Physical Therapy the other day– annoyed, unshowered, hungry and grumpy– not knowing that would be the day she would take her first steps. I say all of this to note that progress is not always a straight line. You never know when your child might do something new. And as parents of children with complex medical needs, there is no guidebook. But, there is connection with others who have been through this before. Some days I feel like I have nothing figured out. Other days I am honestly in awe of how many challenges our small family has overcome over the past year and some change. And while sometimes milestones can seem more like inchstones for our kids with complex needs, I couldn’t imagine my life any other way now. Keira is showing me each day how to be more in the present moment, how to build habits and stay consistent, and how to enjoy life’s simple joys.
Caring for and being Keira’s advocate has pushed me past what I thought I was capable of. My husband and I both learned we had ADHD last year. It was a year of pain, growth, rebirth, and joy. I discovered some of my own deep seated ableist views through my diagnosis as well as my daughters’. As a SPED teacher I felt shame. While I thought I had a non deficit based lens around ability, I actually did not. That was a difficult thing for me to uncover when processing my daughter’s diagnosis.
Over the past year and a half, I’ve learned how much my identity is wrapped up in capitalism and a culture that values productivity and individual success above all else. And if there’s anything that being a caregiver to a child with a disability has taught me, it’s that you’re going to need help. We cannot do this alone. Isolation on this path is not an option. Asking for help does not mean you’re weak or any less of a good parent or caregiver. In fact, it just means you’re doing whatever it takes to take care of your child. We need to advocate for our children and build a supportive community around them. Thankfully, there are countless parents, caregivers, and advocates who have come before us to pave the way for us and our children. While there is still much work to be done, I feel heartened to know I am not alone on this journey.