At the ripe old age of 32, I have realised that, for me, New Year is not about making resolutions or trying to become a new person but it is a time to reflect back on the year: the highs and the lows. At the stroke of midnight December 31st 2021 everyone in my house was fast asleep except for me. I found myself looking up at the clear night sky full of stars through our velux windows from bed and the world seemed quiet (apart from the odd firework), peaceful and full of promise. Gazing up at the stars I could look back over the year and see how far we have come as a family and how far I have come as an individual.
Back in January 2021 I was deep in the trenches of grief. Without a diagnosis for my son I felt unanchored, drifting around in the ocean with neither help nor land in sight. I was overwhelmed with the sheer amount of testing, therapy sessions and medical appointments. We were surviving on minimal sleep. We were not doing well. I was not doing well in particular. I felt like I was drowning, every day that went by felt like I was swallowing down more water and sinking further and further.
2021 was hard, really hard. The pandemic was raging. We were separated from family and had very little support. The words in my journal speak of loneliness, uncertainty and an unhealthy amount of anxiety. Worrying about my son’s future had become all-consuming.
Getting my son’s diagnosis of DeSanto-Shinawi syndrome in August felt like someone had turned a light on in the darkness and a hand was reaching out from a lifeboat to pull me out of choppy waters. It felt like I could finally breathe. No longer was I treading water, not knowing where we belonged. Finally our feet stood firmly on solid ground, the shores full of welcoming faces and beautiful children. We had reached our destination: the rare disease community. Little did we know it at the time but this community is the friendliest, most selfless and most welcoming one we would ever meet. It wouldn’t take long before we were making friends all over the world.
Christmas and New Year are not easy to navigate for families like mine. They can stir up a lot of feelings that have been lying dormant throughout the year. However, this year I could use the holidays to cocoon myself with those feelings. I was able to identify some emotions such as grief, bitterness, jealousy, fear and loneliness and process them. I could feed my face with food and at the same time feed my soul with compassion while being wrapped up in my cocoon. I took the time to take a hard look at why I felt those emotions and try to understand what triggered them and then I let them go. I released myself from their power. Once I had done this I could begin to move forwards towards the New Year.
Getting my son’s diagnosis signified a new beginning for my family. A new beginning means hope. As I gazed up at the stars on New Year’s Eve I also thought about my hopes for the year to come. My hopes for my son’s future have changed from since before his birth. Now my biggest hope is that he has a happy life. One that is full of love, laughter, kindness and friendship. I hope that this year and in the years to come I can continue learning and evolving as his mother. I also hope that I can keep practising self-compassion especially when dealing with difficult emotions that arise when raising a rare kiddo – hmm; maybe it turns out I do have some resolutions after all.