Written by Amber Leonard, member of our Family Advisory Board 

I have worn many hats during my life. First daughter, sister, then wife and business person. One hat I never anticipate wearing was caregiver. At least not in the way I wear it now. For many of us, we have been thrust into the world of disability without a clue of what is to come. We ask ourselves so many questions. As I’ve journeyed down this road, I’ve come to find that the caregiver hat, although at first a little uncomfortable, if you add some grace, you can make it fit nicely.

And COVID-19 has added more challenges – how do we manage health emergencies, priorities and isolation in the middle of a pandemic? For all the caregivers out there, you are not alone. Here are a few pieces of advice I’ve learned over the years.

My first piece of advice: give yourself space to grieve. Some of you might have known prior to giving birth some of the challenges you would face and some of you might not have. Either way, giving yourself and your partner space to be sad is completely OK. This looks different for everyone. Grief is not a one size fits all type of thing. I encourage you to find someone you trust that you can talk to about it. If talking is not style, then I encourage you to find a healthy and safe outlet where you can process it.

Next, find your community. The saying, “it takes a village” has never been more applicable than now. For many who have medically complex children, finding people you can trust and can support your family is vitally important.

My final tip, take time to care for yourself. Caregiver studies have reported that on average, 45% of parents were at risk for health-related or quality of life issues. Caregiver wellness plays an important role in the health outcomes of children who have chronic illnesses.

I can remember early in our diagnosis being in advocacy mode. I was consumed with trying to find the right doctors, right therapists, and the right care in general. Before I knew it, three years had gone by and I hadn’t really taken the time to properly care for myself. We moved after my son’s diagnosis so I hadn’t had the chance to meet anyone or make new friends. It was at that point I realized I needed to slow down and take my own advice, grieve and find a community. It was in those moments that I was able to let go of some of the guilt and let someone else in to help me shoulder what I was going through. We were introduced to whole new community of people traveling down the same road we were in disability. It was a breath of fresh air.

My son is seven years old now. If you had told me early in our journey we would be where we are, I’m not sure what I would have said. But here we are. We are surrounded by the best care and best family we could have asked for. I’m still wearing a lot of hats, but my favorite one is my mom hat. It’s pretty fabulous.

Tips for Caregivers

  • Give yourself space to grieve
  • Find you community
  • Stay connected to the outside world
  • Stay organized when you feel things are out of your control (map care resources, create a resource binder, research and read)
  • Find an outlet for stress
  • Take care of yourself and self-compassion is essential
  • Accept offers of assistance
  • Ask for help when you need it. You are not alone.

Photo Credit: Jamie Napier