As a foster parent to medically complex children, I have cared for several children with epilepsy. I am now the proud Mom to one medically complex child with drug-resistant epilepsy. The depths of care and love that come with him are humbling. I enrolled myself back into school as a mature student to better his care. So, I can be informed, reduce his trauma, and in hope of helping families coordinate their care and services to feel supported and seen. I am currently in Pre-Health Sciences at Conestoga College and will soon be starting my Register Practical Nursing program there.
My desire to further my education came during one particularly hard emergency room visit. After a cluster of seizures, my son’s oxygen levels tanked. He was unconscious, grey, and had a very low heart rate. I rushed him to our small rural emergency room. He was quickly assessed and there was a transport team coming from the larger city’s hospital for him. Our rural hospital didn’t know how to care for him- he was too complex and they were scared. He ended up with 22 pokes to try to get an IV started and 3 failed bone drills for that IV. As I held him in that big city hospital, I promised him and myself to learn more to improve his care and lessen his trauma. That week I applied for school.
Through this journey as a parent to a child with complex epilepsy, I’ve learned a few things and became rooted in supports. A great improvement to our lives has been accessing coordinated care at our big city hospital. It is a dream of mine to pursue a career as a Registered Nurse so I can help bring coordinated care to rural communities by way of a satellite office. Keeping children and families comfortable in their communities. Normalizing the complexities of epilepsy for communities. These outreach programs have begun but are not close to my rural community yet. We deserve it. To be seen, and cared for without a traumatic transfer or needing to make a 2-hour drive to the city for a 10-minute medical appointment. Coordinated care is the future for families with challenging epilepsy diagnoses, and we are but a few changemakers away!