Two Years
It is two years ago today, 6 February 2021, that Ellie received her diagnosis. We despair over the fact that Ellie hasn’t been truly “living”, not living life the way you or I do. Not having fulfilling experiences such as swimming in the ocean, going on a hike, waking up feeling energised or well rested, not feeling hopeful about what the day will bring or the weekend will bring. The days run together for her with chronic pain, nausea and fatigue. Her choices revolve around what to eat or drink and what to watch on Netflix or YouTube.
But, her will to fight and her internal strength are immeasurable. She never gives up. She does find joy in the small things in her life such as snuggling up next to Chewie, wowing us with her (Rubik’s) cubing skills, voraciously reading book after book, and trying new foods.
And although we despair that our darling, beautiful, incredibly intelligent daughter is not living her fullest life the way she used to, we are EVER grateful to kiss and hug her every day, to look into her beautiful green-grey eyes, to have her at home with us, and to wake up to her face every day that we can.
Comments (7)
This illness really sucks, but you are all amazing with your gratitude for what you do have, rather than focusing on what you don't. Keep being strong Ellie. Hugs to you all. xx
Thank you for this and all the amazing updates, it truely puts things in perspective and helps us to be grateful for all we have. The strength of your family is inspiring xx
Acceptance of a new reality and finding the joy therein - a tough ask for you all, but good for the soul. Has Ellie had a go at abstract art - it can be very liberating splashing paint around. xxoo
All the love in the world may not change a thing but a positive outlook and kindness changes everything. Hugs to you all 💗
Your journey of hope and courage, whilst heart wrenching, brings to us all a greater humility, so much more valuing, and much more loving those we hold dear. So thank you Ellie and you all for sharing your stories. I know that Ellie will get to swim, play and explore!
You guys continue to be amazing. Keep up the fight Elllie you are loved. Glad you have Chewy I’m a firm believer that dogs help kids and adults through the most difficult things in life. 🐾
Thinking and praying for all of you. Your love and heartache for her shines through in this post. What wonderful parents you are.