I have been feeling familiar emotions of acute grief leading up to your birthday and also because of the rapidly changing and uncertain times we are all living in right now. I fall back on the coping skills we developed when you were diagnosed and after you passed away. It is amazing how what really matters takes center stage in times of true hardship. You taught us that caring for ourselves emotionally, spiritually and physically is important always and even more so when we are grieving. We have been trying to live day to day and simplify things. Where is our emotional energy going right now and how are we recharging? Have been some of the questions I have been asking myself lately, especially with Callum and Isla returning to school and Dad and I returning to work. You taught us that stepping back for as long as we need whenever we need to is ok and encourages self reflection, a quietness and growth. When things are hard scaling life back and focusing on what is most important has been a vital coping strategy for us. Interesting how a meal becomes more savoured, a laugh with friends and family feels like a comforting sigh of relief and a hug from Isla and Callum feels like a warm gift from you. Scaling it back and taking in the little things is really us working on being more mindful and present. We need that.
When you were diagnosed with SMA we instantly began thinking about the ways we could modify life and adapt so you could enjoy everything to the fullest. You loved the car yet had to lay flat to breathe properly so Grandpa helped us to modify your car seat so you could enjoy your nightly car rides. You loved the bath so we modified your bath seat so you could enjoy that special time in the water. Our amazing OT was always modifying toys to make them accessible for you. We found new ways of doing things and we had to let go of things that no longer worked for our new way of living. I am drawing inspiration from you as always as we enter our new back to school and work routines. I know it is ok to mourn and grieve for the life, plans and hopes we all had while at the same time living fully by modifying the way we once did things and discovering completely new experiences and ways of doing things. We do not have to wait for “things to be better” to live fully. Life includes all of the feelings even the really hard and uncomfortable ones. Life is not simply good or bad days it is a blend of authentic human experiences. One essential ingredient to coping has always been hope even a small flicker along with patience and compassion towards ourselves and others goes a long way to healing. There has been a lot of discussion lately about the importance of being adaptable. I fully agree that being adaptable is essential however in order to adapt we must allow ourselves to step back, feel it all and evolve in a natural way. We must take time to truly know ourselves and what we stand for. Humans do this naturally but it is not linear and each one of us will evolve and adapt in our own way at our own pace.
Just like the caterpillar who becomes the butterfly I know we will get there and the journey in evolving can’t be conjured or rushed. We are adapting throughout the entire process. We will continue to take it one day at a time being mindful, gentle and loving to ourselves and others. Emersyn you continue to be our source of mindfulness and connection to what life is really all about. We know your story and gifts are helping so many people right now and we hope that on your 12th birthday you can feel our love and thanks. We miss you deep in our hearts and we celebrate you and the magical person you are. Even beyond earth you continue to evolve and grow my dear girl and we will continue to do the same. Happy 12th birthday beautiful Emersyn we love you and miss you always!
Mom, Dad, Isla, Callum and all of your family and friends xoxoxo