Life for Sarah Weir’s family changed forever in 2013 when her giggly two-year-old baby girl was diagnosed with neuroblastoma. Evie Grace endured surgeries and seemingly endless treatment only to relapse four times before gaining her angel wings on 19 December 2017. And although the situation we currently find ourselves in is one the world has never encountered before, much of it feels so very familiar to Sarah as she shares here.
I feel as if our past experiences have trained us for what is unfolding in 2020.
The isolation, the uncertainty of life, feeling like life has been put on pause, not able to plan ahead, and for me, my ability to work has mostly be taken away from me once again. And yesterday, it was all just too much. I was emotional, heavy-hearted, and cried through most of the day as the new way of life loomed before us with no clear end in sight.
Part of me felt silly, as I know all the techniques, and I have faced and survived far worse. But I think that is exactly the reason why I was struggling. Because the feelings are all too familiar, and it triggers to bring back the feelings of trauma we experienced for those four and a half years while Evie was in and out of treatment. So, as well as facing the challenges of what this virus is posing, I find myself reliving challenging days and feeling the emotions all merge into a blur.
Possibly the most challenging part of isolation and staying home is the magnification of not having Evie here with us. The dynamic of her not physically being in the house with us is very much felt, even more than usual while the family is always here together. Now that Alicia is schooling from home and unable to see her friends, it’s painfully obvious she doesn’t have her sister here to do activities with. We have so much time on our hands, not many distractions, and the ache of missing her is felt so strongly.
Evie's big sister Alicia homeschooling during COVID-19.
The one thing that is different compared to the trauma what we have been through is that every person in the world is united in facing the same situation more or less.
During Evie’s treatment I often felt very lonely. Many people didn’t understand and could not comprehend what we were truly facing. Although I feel saddened that the whole world has been plunged into this crisis, it is comforting to know that we are in this together. And although Evie is not here, as always, she continues to teach me so many things, and my time with her is helping me to soldier on through the pandemic.
So, I wanted to share some of the things I have learnt through tough and traumatic times, that are helping me through what we are currently facing. Not because I have all the answers, or that I don’t have days when I struggle, but because maybe my life experiences and lessons can help encourage someone who may be having a bad day, to know they are not alone, and to try and walk through this together, virtually of course!
Evie sparkles as a butterfly.
Take one day at a time
This was often my mantra during the four-and-a-half years we spent trying to get Evie better, and even when we lost her. As soon as I began to think too far ahead, it overwhelmed me, and I had to just get through the day that was before me. Although it feels like I am taking a step backwards, I think going back to tackling one day at a time is so important right now. When I begin to think ahead at what’s going to happen, and how long we may have to live like this, it consumes me and I feel so down. I have learnt that worrying about what may or may not happen does not change the outcome – it actually takes up time and energy, then you miss appreciating the day in front of you. You miss being present. My Leesh (Alicia) often worries and asks, ‘what if…?’ My reply is always the same. We can’t worry about ‘what if’ because it may not happen. And we know that ‘if’ it does happen, we can face it if and when we need to. Just like everything we have had to face in the past.
Try and look for the positives
Remaining positive can be hard when there seems to be so much negativity and news around the world is screaming disheartening headlines. Throughout the darkest of days during Evie’s treatment, whenever I felt crushed and overwhelmed, I would try to find at least one positive thing to be grateful for to remind myself that there were good things to hold on to. This has been important in the past few weeks, to look at the positive aspects of staying home, like the fact that we get to spend time as a family, the ability to connect with people we love via technology, enjoying a slower pace of life, the simplicity of what truly matters. Finding even just one positive can be a lifeline on a day where it feels like you are sinking.
Celebrate the victories. Allow yourself the painful moments
There are going to be good days, and there are going to be hard days. It’s a given. I have learnt to be okay with the bad days that come - not to fight them or feel bad for having them. When I’m having ‘a day’ and it all feels too much, venting with a friend and having a good cry does wonders. Allow yourself to feel the pain of what’s happening, to grieve the change and the loss of our previous way of life, the loss of physically seeing friends or family, being able to hug, and for many the loss of a job. Give yourself permission to feel the frustration and admit you aren’t coping. Equally as important is to celebrate the victories and the small wins. Celebrate the good days. Celebrate the moments of connection or beautiful family time. Celebrate the days you’re super productive and things go smoothly. And allow yourself days where you aren’t so productive.
Life will not go back to normal
From the day Evie was diagnosed our world was forever changed. No matter the outcome, we were never going to go back to what life was before. We had to adjust to a new normal. With unprecedented events unfolding across the world, we will get through this, but we will be forever changed. And that’s not necessarily a bad thing. As a human race, we may come out of this more conscious of our effects on the planet, we will appreciate the important things, we will value time with our loved ones and not take for granted the joy of a simple hug.
Evie's smile could light up a room.
A memory popped up the other day of my gorgeous girl beaming while she was in hospital. The caption had been a quote I’d seen somewhere in the hospital which was, “When the world gives you a hundred reasons to cry, show life you have a thousand reasons to smile.” What a beautiful reminder it was to me to continue to smile, just like Evie did. I think I may change it for this season to “When COVID-19 gives us reasons to cry, let’s show COVID-19 we still have reasons to smile.”
This story has been republished with permission from Sarah Weir's blog Pray For Evie.