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!
Love
Mom, Dad, Isla, Callum and all of your family and friends xoxoxo
