The never-ending void of caregiving

February 24, 2020

I often refer to the first 2 years of our caregiving journey with Maclain as a black hole, the Bermuda Triangle of parenting, the vortex.  We literally knew no one who was in a situation similar to ours. As timing and luck would have it, all of my mom friends with whom I had spent my first maternity leave with went on to have their second kids around the same time that I had Maclain, and so we would be off together again for our second run.

The difference this time was that I didn’t have a baby who was developing the in the same ways as the other babies. I was constantly watching, comparing and worrying because I knew that Maclain was lagging behind. My second mat leave started in the NICU, where we spent 3 months not knowing what life would be like once we left the hospital for the real world. Once we were discharged it was consumed with therapy and doctor appointments, assessments and tests. Carting around my 2-year-old son and my new baby, who had so much going on medically.  

Even though I had so many friends around me during those early times with Maclain, I felt so alone. And with every diagnosis, the black hole got deeper, the triangle bigger and the void seemed never-ending. Cerebral Palsy, profound hearing loss, failure to thrive, chronic lung disease. Each of these diagnoses came with more appointments, more doctors, more questions, more worries.

I knew of no other parent walking in my shoes. No one I could truly share my fears with, ask questions of, learn from. I didn’t have a community I felt that I could relate to, and it was the worst feeling. It wasn’t that my friends and family weren’t supportive and helpful, I just needed so much more. I needed to connect with other parents who were caring for a child with a disability who could understand how I was feeling and what I needed.

The value of community

I slowly began to reach out to find others that I could connect with, to find a community I could belong to as I stepped into my new role as a caregiver. I sought out coffee chats and parent meet ups through my local children’s treatment centre. I asked therapists for names of other parents that I could meet and talk to.  I joined online groups, eventually becoming a creator and moderator of a Facebook group called PAL, which stands for Parent Advocacy Link.

These supports became my lifeline and opened up a whole new world as I navigated this foreign land. I started to meet parents and caregivers who were new in their journey or had been down the path for a while, each of us having to have made our way through the dark in search of brighter days ahead. People from all over Ontario and Canada, from all walks of life, each with their own stories and experiences.

I started to form friendships with other parents as we bonded over therapy ideas, feeding issues, adapted equipment, available funding sources, recreational options. How to find accessible places to visit, and places to avoid. How to ask for what we needed, and how to better advocate for Maclain whether that be in the healthcare setting or school environment. I finally had people I could relate to, and who gave me their shoulders to lean on.

Finding opportunities to join committees and associations became a big goal, a deeper desire to become more entrenched in the special needs world which helped broaden my chances of making more of the connections I was so desperate for. I was able to meet and interact with parents and caregivers, but also clinicians, policy makers, researchers. And everything I learned, I wanted to bring back to my community to share the things that had been shared with me. I have made it a goal to reach out and lend a hand for those caregivers who find themselves in their own black hole, their own vortex.

I have always said I belong to a club that I had never wanted to be a part of, but that I am so thankful now that I am a member. Without my caregiving community I know without question that I would not have access to the knowledge and resources that I have. I would not have the vital lifelines that have been created with my group of parents who are going through everything that I am going through, even if our stories are not identical.

I look at where we are today, where we have come from since those early days and am amazed at what we have learned. I know we would not be even close to thriving were it not for the amazing people who have shared their experiences, their friendship, and their learnings with us.

How did you navigate the beginning of your caregiver journey?