Ivy's life could so easily be defined by her "can't"s and her "never"s. There were so many things she couldn't do. She couldn't walk, or stand. She couldn't eat. She couldn't see, or speak. She never got to climb a tree, or build a sand castle. She never caught fireflies, or jumped into a mud puddle. As a family, we couldn't take Ivy to all the places we wanted to show her. We never got to hear her laugh uncontrollably in a tickle fight. We never got to truly relax for long enough to forget that Ivy was dying. In a way, that has been Ivy's greatest gift to us. We've always known she was going to die. We've loved her every day, knowing those days wouldn't be endless. We've chosen to define her life, not by the can't and nevers, but by the moments that took their place. I don't think I can describe just how happy I was the first time I saw Ivy curiously crinkling an empty chip bag. It’s a memory that’s always stuck with me. We never thought we'd see her so engaged and happy. When going through photos after her death, we saw so much joy - joy that we had forgotten about in the day to day of watching her decline. We made a bucket list early in Ivy’s life, activities we thought every child should experience, no matter how short their lives. She dipped her toes in the ocean, got a library card and a passport, she flew a kite and made snow angels, picked apples and listened to live music. She read books in a living room blanket fort with her cousins Ari and Mila, and felt warm desert sand on her toes with her cousin Nora. She danced with her daddy and rode in his rusty old car. There were so many moments in between the can’ts and nevers, and her smile in those times was everything any parent could want. She loved floating in warm water, paddling on the canoe, and listening to birds. One time, when camping, Ivy howled like a wolf when she heard her friends reading books about animal noises. We realized that day just how much her face and demeanor changed around the voices of the people she loved. She was always surrounded by so much love. Ivy walked miles with her grandpa Jim and never without a favorite crinkly page, doll or piece of custom clothing made by her grandma Teri. She cuddled for hours in the lap of her grandpa Kurt, and no one could read and understand her quite like grandma Jeanne. Except for maybe her brother, Max, whose kisses and aggressive hugs made her roll her eyes and squirm away, but who she was always reaching for when he was around. Every person here, and so many who aren't, have been touched by Ivy. No matter how big or small her impact on you, our hope is that it results in just a little more empathy. A little more compassion. A little more kindness. If every person who knew her can now look at the world with an ounce more perspective about the things that truly matter, about how incredibly fortunate we are to be able to love each other every day - then Ivy's life had meaning. Her suffering, our grief, can be bearable. Go out of your way to make someone else's day better, just because you can. Embrace and celebrate the moments that Ivy can't and never will. We love you, Ivy. We always have and we always will. Thank you for showing us what it means to be parents, for teaching us about joy, strength, patience and love. You are perfect, and we miss you. -Eulogy written by Colleen McCullagh, Ivy's mother. Donate in Ivy's honor to the The Elizabeth Watt PDCD Research Fund (https://pdcdresearchfund.com/). Video recording of Ivy's funeral service at Return Home. https://www.youtube.com/watch?v=GWGdOyB8d_g Ivy's memorial page hosted by Return Home https://my.gather.app/remember/ivy-ohlgren