Today was a very emotional day, it was my last class with my special needs student – Elise for a while, as she will undergo a major operation this coming Tuesday ( a ⅔ corpus colostomy). Elise suffers from a rare neurological disorder, Subcortical Band Heterotopia, as well as epilepsy.
Elise couldn’t make it to class – so I went to her home with a basket of wool, sticks and felt and some modeling clay.
Today I wanted to share with her the gift of the daisy flower. I love daisies, they remind me of happy days as a child making daisy chains in my back garden. I love how they smile, they are such happy flowers – their simplicity and purity speak to my soul.
They symbolise innocence and all these words describe this beautiful, soulful little being whom I have had the pleasure of playing and creating in our one to one nature art classes for several years now and what a joy our creative journey has been.
Elise loves to name her little characters and creatures she makes, today was no exception – to my surprise and delight she called her Daisy figure -Marghanita!
When she asked what’s your name – looking at my daisy being I replied – ELISE!
I cannot express in words how precious and sacred today was, spending time making up little stories both orally and visually though our illustrations about Marghanita and Elise and their forest adventures, which happened to include finding winged seeds from the maple tree so we could fly away from the Bald Eagle that was chasing us.
I don’t normally draw or write along with my students, however todays story was all about us, our little adventure as daisies and it seemed the right thing to do, I just needed to record our precious storytelling….
My basket arrived home with an additional artwork ..
I will remember this day each time my eyes gaze upon my little “Elise” Daisy figure who is happily leaning against a vase of felt daisies on my desk. I cannot wait to reunite the little daisy characters when Elise has recovered from her operation.
I believe in prayer, prayer is powerful and so I come to you today to ask for your prayers for our little warrior Elise Harrison.
Thank you and bless you all for your prayers, with deep love and gratitude Marghanita x
From Carole, Elise’s mother-
On Tuesday May 28th, Elise is scheduled for a ⅔ corpus colostomy, they will split her hemispheres ⅔ of a cut, not a full split, because she is verbal. This procedure will hopefully help stop the spread of seizures from one side of the brain to the other. Elise has had an increase in battling seizures especially generalized tonic clonics and drop attacks. This will hopefully reduce or stop these two types seizures. The recovery after surgery would be 6 to 8 weeks. Our purple warrior is strong and a fighter she’ll amaze us.
As scary as this may sound, our hearts know this is the right gift for our warrior, Elise deserves a chance at a better quality of life and longevity. Elise is at risk EVERY day for injury or SUDEP. This procedure is a gift and we are excited that she is a candidate for this surgery. Battling unmanageable Epilepsy affects her physically, emotionally and socially. The constant unannounced interruption and the physical trauma the body endures while fighting a seizure. Epilepsy impacts the whole family with our constant worry, always being on alert and making sure Elise is safe, it becomes exhausting and requires 24/7 care.
As we get ready to embark on this new chapter of Elise’s journey, we want to thank you in advance for respecting our choices, for the continuous ways you support our family with your positiveness, prayers, encouraging words, strength and well wishes sent our way. This is a lot to take in, to process and all we can ask if for all the love and light sent our way for our purple warrior Elise.
Peace and love
Carole, Mike, Lilianne and Elise
You can find out more about Elise’s journey here: Elise