I have a long list of tasks and to-dos, but I just need to spend the day being with Ellie. She loved to write as much as I did. As I write, I'm looking at the peace lily sent by Chris' aunt--it has its first two blooms on it, one that just popped open.
I've been blogging since 2005, and much of that time has been spent writing about the ambiguous losses and grief that accompany chronic illness. With Ellie's death, exactly 25 years and six months after the loss of my health, I'm facing and witnessing a new type of grief: the finality of losing Ellie.
Ellie is everywhere. All of the time. The colorful pens I purchased to share with her. Scattergories and LIFE on the bookshelf. The tablespoon measure that disappeared after she cooked a meal for me. The fuzzy blanket on my lap that my friend gave me as a gift--and that disappeared every weekend into Ellie's room. The bracelet on my wrist that the same friend gave me as a gift for my birthday--before I had even met Ellie--that matches the pin Ellie wore on her favorite pleather jacket. Both say: She believed she could so she did. The bottles of nail polish waiting to be used on Ellie's nails. The kitchen where she loved to cook. The taquitos in the freezer. And of course, her bedroom. The door remains closed, but we've left her fairy lights on ALL OF THE TIME.
When I think about Ellie, I think about how much she loved life, how much she embraced it with all of her being; how much she loved school and learning; how much she loved everything theatre; how much she loved cooking and the way she welcomed me into her life by cooking meals for me; how much she cared about others; how much she loved staying up on all of the news and politics, especially anything LGBTQ+ related; how much she really loved history, especially WWII, Victorian and Tudor times. She was creative in every single way possible--singing, drawing, writing, acting, painting. She could do it all.
Ellie shined. Ellie made the world better. Yes, she was funny and smart and witty and artistic and all of the things. But most of all she was ALL HEART. Somehow this young woman who was born with Hypoplastic Left Heart Syndrome--one of the most severe congenital heart defects, was the most empathetic and kind human being. She cared about every marginalized population; she was patient and kind with her autistic little brother; she welcomed me into her life immediately.
When I think of the Jewish phrase "May her memory be a blessing", I know that every bit of Ellie's memory is a blessing. I don't understand the "Why" behind any of this. I can't make sense of this loss. What I do know, is that as we grieve, we need to remember that Ellie would want us to give back, be kind, do good. She would want us to be happy, but she'd also say it's okay to feel all of our feelings.
Right now, I am angry. I am sad. I am numb. I am a caregiver for Chris. I am grieving the loss of so many dreams. Chris is grieving the loss of his child. What I have born witness to in the past month is almost beyond comprehension.
Chris and I have experienced one of life's greatest joys: falling in love. Almost exactly seven months after our first date on May 16th, 2023 Ellie was gone, and we are facing one of life's greatest challenges for a couple.
Every day I wear my bracelet that has the same quote as Ellie's pin. I am sitting with the cozy blanket she always found a way to sneak up to her room. One dog is on each side of me, just as she would have liked it to be when she was with the dogs. I have to pee for the tenth time today, just like she always had to do because of medications she took. I replaced my nose ring with a teeny little rose gold hammered stud that sparkles like Ellie did. She was also very specific about preferring rose gold over silver. :) My nails are currently a purple shimmer.
I loved you Ellie. I so wish I had known you long enough to say it to you before you left us. Thank you for all of the gifts you gave me in the short time we had together, including being one of the many reasons I fell in love with you Daddy.