Written by Brenda Agnew.
Take a look outside, and you will see a different world than what we knew only two months ago. Everyone is doing their best to adapt to this new reality with many unexpected challenges. In this blog, I will share the experience of how my family and I have been coping with COVID-19, because our situation is a little different than most.
Self-isolation and social distancing aren’t new to us.
When Maclain came home from the NICU, it was at the end of October and the beginning of cold and flu season. Health care professionals told us to be vigilant and to avoid taking him out anywhere there were crowds, or to a home where someone was sick. We had bottles of hand sanitizer throughout our house. We asked friends and family to stay away if they weren’t feeling well and to wash their hands thoroughly when they came to visit. Being born a preemie and coming home with weak lungs after being ventilated for many months left Maclain vulnerable. A simple cold for him could turn into something much worse. We spent his early years in and out of the hospital for repeated bouts of pneumonia. So it was not difficult for my family to adhere to the COVID-19 prevention guidelines, to wash hands frequently, to sanitize and to stay home; they were not new to us. We have lived in a world of continually preparing for the unknown, as have most of the caregivers I know.
I have been asked by friends often during this pandemic how we are holding up. More specifically, how is Maclain doing? By and large, we have been doing ok, figuring things out, taking the days as they come, but recognizing that our situation is unique to many of our friends. There are certain aspects of this current situation that become more troublesome for caregivers, regardless of who they are caring for. I know that every family is different, and their coping mechanisms are different. Here is my perspective on health, keeping my family engaged as best I can, and lessons learned so far living through COVID-19 as a caregiver.
Staying home so we don’t have to stay in the hospital
I don’t panic when it comes to Maclain and his health. We have been around the block so many times with pneumonia, intestinal and many other health-related issues. The difference with COVID-19 is that it is new, and there is no vaccine, or medications to treat it. If Maclain were to contract this virus, we have no way of knowing how his fragile lungs would handle it. Being a premature infant and using mechanical ventilation support for many months took a toll on his lungs. We have spent many fall, winter and spring months with hospital admissions for pneumonia, and they don’t get any less scary. As healthcare teams across the province respond to this pandemic, resources have become scarce, and are being maxed out. This new healthcare system requires new triage protocols to be designed and reviewed. It is uncertain what this may mean for a child like Maclain. But for now, we are feeling grateful that everyone is healthy and safe. And we are also not letting fear control too much of our day because it will just take over.
Keeping active, engaged and sane
In the first few weeks, we were able to find some different things to keep our minds active and busy like puzzles, crafts and family game nights. But being together all the time we also need a break from each other. I need my kids to connect with their friends or find something to do independently. It has been difficult balancing my need for “me time” and Maclain’s needs, without feeling guilty.
I am sure that while so many kids his age miss their friends, “typical” kids are finding ways to keep busy and doing so independently. Building forts, playing games with their siblings, going on a solo bike ride, crafting, connecting online with friends, even doing schoolwork. It isn’t this simple for Maclain, who needs someone to facilitate everything for him. He can’t play a video game with his friends for a few hours or go outside and shoot hoops or ride his bike. He can’t sit at the kitchen table and do his schoolwork on his own. There is no Friday night rock band or movie or bowling outings. He can’t have friends over for hangouts, which is usually the easiest for us because of accessibility issues. As a mother, this makes my heart heavy and has been the hardest part of having to stay home and stay away from people. Being social isn’t hard for Maclain, but finding an avenue for socialization is. I haven’t had the guts yet to tell him that his summer camp has been cancelled, and so has his Challenger baseball. I am waiting until I have some good news to say to him before I give him more bad news. I worry what this looks like for him when we come out of this.
Lessons learned so far
Being the half glass empty kind of person, I am genuinely surprised at how I have handled this pandemic so far. I have never been shy talking about my issues with depression and anxiety and how they can become all-consuming when faced with a challenging situation. I was one of the last holdouts even to acknowledge this was going to be a global issue! But I have to admit that while I am tired of these four walls, and cooking so much. Not being able to go out and anxiously wondering if our summer travel plans will happen, it hasn’t been all bad. We are healthy (knock on wood) and we are safe. We have food in the cupboards, thanks to online shopping. We have been entertained with Zoom calls and Facetime check-ins. I am more grateful than ever for my special needs community. Sharing survival tips and keeping each other calm in situations that are so much different than other families. I need those connections just as much now if not more than ever. As a family, we are not sick of each other, and my baking game has picked up slightly. I have seen communities come together to support each other in ways I have not seen before. Porch drop-offs of flowers, sharing ingredients, wine deliveries. It has been another reminder that there is good in this world and that we can take care of each other and rely on each other when the moment of truth is before us. Even though there are bad days, I feel like I have proven yet again that “We have got this”. We are resilient, and it feels like our twelve years of special needs parenting training has given us what we need to deal with these unprecedented times. Our life so far with Maclain has been unprecedented and yet here we are thriving and surviving. And crossing fingers, we can all go back to whatever “normal” is sometime soon!