This Rare Disease Day, the TANGO2 Research Foundation highlights “Living with a Unicorn” –  a blog by Gloria McDonald, Olivia’s mom. Gloria talks about Olivia, her diagnosis of TANGO2 disease, how their life changed, what they’ve learned along the way, and more. Gloria writes, “We hope that you will feel encouraged and inspired by Olivia’s story. She is a warrior, and so are you.” A huge thank you to the McDonald family for sharing this with us. Gloria lives with her husband Chris and Olivia in British Columbia. 

From this blog post, titled Walking Through the Storm, I share a major part of our storm and how we made it through in one piece.

I would like to begin, not at the beginning, but rather, somewhere in the middle. This part of our storm began on July 18th, 2018, when our daughter Olivia faced death for the first time. She was experiencing a metabolic crisis, and as a result, her body was shutting down. We experienced earth-shattering emotional devastation that did not dissipate for a few days. We lived moment by moment as we waited for fate to shine in our favor, and after what felt like the longest passage of time, she woke up. We didn’t have much time to celebrate before things started to go sideways again. That event was merely the introduction to what was coming our way.

Over the next 17 months, we would face a variety of different challenges that also came with new setbacks. Each challenge was met with a fierce determination to overcome from all three of us. Not once did we ever consider throwing in the towel, however, on occasion, we would find ourselves in a puddle on the floor. Just a few examples of our most challenging experiences are… At 9 months old, and again in April 2019, she had a C-Diff infection (and to this day her bowels are still messed up). At the beginning of Feb 2019, she contracted a Bacillus cereus infection in her IV subdermal port, and one month later it had returned (which caused two separate metabolic crises, severe muscle tone loss, and an inability to hold up her head on her own for almost a year). At the end of September 2019, we made a final failed attempt at weaning her off TPN (which caused hypoglycemia, a severe full-body rash, a protein, zinc, and selenium deficiency, hair loss, bloating, extreme pain, and many other symptoms too. At the same time, she caught a staphylococcus skin infection, and they also noted a reduction in her brain mass size on a CT scan).

These three examples only scrape the surface of what Olivia experienced during those 17 months of her hospital stay. I’m not sharing this with you to gain sympathy. We found that in our case, sympathy didn’t help, however, love and support did. What I’m hoping that you get from reading my blog is that, regardless of what you may be going through, you too can overcome it.

By now, you might be wondering what I mean when I say ‘‘storm,’’ or how did we manage to make it through all that chaos without becoming a complete disaster. The truth is that although we may not be a disaster, sometimes we are a bit of a hot mess. In our case, the storm is a metaphor for the way it feels to be in the midst of devastation. It hit me one day, a vision of myself being hit by a storm. A hurricane with intense winds coming from every direction, flying debris, and an intense and overwhelming feeling of fear and confusion. I have to use every ounce of strength to keep my feet on the floor. Then I’m faced with two decisions; do I let go of the ground and find myself at the mercy of the relentless storm, or do I hold tight, dig my heels in, and make it to the other side. I have always chosen to dig my heels in. In this particular storm, I wasn’t alone. With Chris and Olivia by my side, we made it through one step at a time (quite often we moved ahead by 2 steps and back by 1). Each step represents a challenge that we have had to overcome. A step forward was a positive outcome, while a step backward was the opposite. In some ways, it was easier having others walk alongside me, however, on occasion, it was actually more exhausting than doing it alone. When you are alone, you have only yourself to worry about (unlike when you are with others), however, you miss out on a chance to develop a stronger bond by facing adversity with someone else. For that reason, I am grateful that I did not face this storm alone.

My advice to you, if you’re facing your own storm and your feeling overwhelmed, pause to focus on your breathing. If your chest feels tight and your breaths are short, sigh, then take a deep breath in until your lungs are full. Hold your breath until you can no longer, then breathe out slowly until your lungs feel empty. Repeat this breathing pattern until your body begins to feel relaxed, and you no longer have to think about breathing. Once you have your breathing in control, then you can focus on your next step. I found that quite often clarity resulted in progress. Two other things we did that helped massively were, documenting our experience and talking to others. I documented as much as I could remember through our GoFundMe campaign as a way to keep people up to date on Olivia’s progress (I also found the process to be a little therapeutic). While we were in the hospital with Olivia, we spent a lot of time talking with our close friends and family, social workers, therapists, and spiritual health workers. It was the combination of breathing exercises, writing, and talking that helped take us from a state of barely surviving to a state of thriving. We reconnected with nature, we found games and activities that brought us joy, we created habits to take better care of ourselves, we helped others when we could, and we started practicing more positive self-talk. With consistent effort, our life gradually became better. Our support network also played a big part in helping us navigate our way to a state of thriving. I want you to know that if you’re feeling alone, please reach out to someone who cares about you. Find a support network, and don’t give up on yourself. Our path to a happier life may look different than yours, but what lies at the core of any personal growth journey is the acceptance that your life matters.

Want to read more?  Visit her blog Living with a Unicorn.