Talia’s life was so quiet, just a whisper in the universe but her impact on us all will echo into eternity. She was diagnosed one year ago today and my family was given the near impossible task of loving and caring for a child we know we would lose. I feared many things in those first weeks, the loss of my family, the loss of my marriage, the loss of my sanity but I quickly came to realize that while I didn’t have control over Talia’s fate, I had plenty of ability to make a choice about the rest.I made a commitment even on that first terrible day to not let this disease drag me or my family down into a place where we no longer recognized ourselves. Everyone in this room joined me in creating our vision of our family as neither tragic nor heroic but simply strong.I remember revealing the diagnosis to my parents and saying “You can mourn for a day, but then we’ve got to DO this.” And so we did. We came together and survived the unimaginable. Being a grandparent is sometimes referred to as the easiest job in the world, all play- no hard work. That was certainly not the case here. It’s only because of the hard work you all put in that David Nathan and Audrey and I were able to still find joy in our lives. We can finally mourn for Talia now, but then- We’ve got a life to do, and I plan on living it to the fullest.Everyone came to know Talia and our family, whether in person or through my writing had to grapple with questions deep within themselves about humanity, medicine, and the outer limits of what love means. It’s through the hard act of confronting these questions that we push ourselves to be more present, more appreciative of each other and more true to ourselves. I hope you’ll all continue to ask these questions, as I plan on spending my life trying to understand them.Nathan and Audrey wanted me to tell you all that Talia was the best sister ever. She loved laughing with Nathan and holding Audrey’s hand. Their time spent together as siblings will remain the highlight of my life.I’ve heard it said that when you lose someone it’s like there is a hole in your heart. An emptiness. Like a part of you is missing. I don’t feel that, I don’t feel empty. I feel like there is a weight on my heart. I feel the warm weight of love, having loved Talia and being loved by her in return and I feel the cold weight of sadness and loss. I held Talia in my arms almost every day of her life. I can feel her now as I speak to you. I loved her before she was born and I’ll love her far after her death. My arms feel empty now but my heart, my heart feels full. My heart is bursting from the depth of love that Talia has brought into my life. I have seen, at too early an age, that we don’t control what tragedies may befall us and nothing, not a single extra day, is guaranteed. This could be enough to make you want to give up but I’ve also learned that if you approach life challenges with openness to others, honesty with yourself and love for all you can survive anything. I love you Talia, and I promise you honor your existence every day of my life. Your soul is now inside me and everyone who’s ever known you, and that’s a weight we will all gladly carry.Please donate to the Talia Lynn Steckman Fund to help support pediatric palliative care and degenerative neurological disease research.