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Ellie: My Kindred Spirit + 18's

I can't stop thinking about the number 18.

I met Ellie and Hank for the first time on October 22, 2023 at my Rowe's Research Runners event. Chris and I had been agonizing over how best to introduce me to the kids. We fell madly in love almost immediately after meeting in person (we spent about three weeks just chatting over Bumble and text messages).

Ellie is a large part of the reason that I fell in love with Chris. When I asked about his children, he told me about Ellie and Hank, both of whom had disabilities. I had yet to reveal my own disability to him, but once he shared about his children, I told him that I, too, was disabled. Chris immediately replied that he wasn't scared and to tell him more about myself and my disability.

Chris talked about Ellie a lot. I knew so much about this beautiful human being long before she ever met me. He kept telling me how he couldn't wait for me to meet Ellie because I was so much like her, down the the five letter names that sounded so similar.

As it turned out, the moment I met Ellie at the event we got along famously--she accepted me immediately. That's when she told her dad that she wanted to have me over for dinner at the apartment, cook for me, and welcome me. Then she asked Chris: "Does Emily have any dietary restrictions?" Ellie was so far ahead of her age when it came to empathy and kindness.

Chris and I go over and over all of the timing of things. What if Ellie had had her surgery in August when it was originally scheduled? What if I had never met her? Her surgery ended ups being postponed two times. What if I hadn't gotten those nine precious weekends with her? What if we hadn't waited six months for the kids to meet me? (We were trying to follow all of the 'rules' for meeting kids).

The weekend before the morning Ellie died, she had a big high (as is often he case before death), and chatted and chatted away with me for quite a while. She was fired up about a new law in Ohio that would require transgender kids to have internal exams. She knew this was just an 'ask' for transgender people to be molested. We talked about having children (which I won't share here because that's Ellie's to take with her); bodies that betrayed us (we cried together over that one); her audition for the Spring musical and hoping her post-surgery body would allow her the energy to dance.

I hate how quickly the conversations and memories of these moments start to fade.

I only got to spend nine weekends with Ellie, including the last one when Chris and I cared for her around the clock post-surgery. We had game nights and nail panting and home cooked meals. We had latkes, a nacho bar, salmon in the crockpot made just for me by her, taco soup and cheesy potatoes. Ellie cooked whatever caught her fancy and Chris went to the grocery for any ingredients she might need.

Those nine weekends were so special and I loved our family of four. I could not wait to have Ellie as a stepdaughter. I could not wait for all of the memories we would make.

We were so much alike.

And while I struggle to make any sense of all of this loss, I can't stop thinking about the number 18.

I got sick on June 18, 1998. Ellie died 25 years and six months later on December 18, 2023. The two greatest losses of my life so far have happened on the 18th. For those who are not familiar with the number 18, it means "life" in Hebrew. Here is a nice little explanation of "Chai" if you are interested.

Ellie and I both love life. We both live it to the fullest. We are forever connected in our love of life and bodies that failed us. We believed in the good of others and in being kind and empathetic. Is it really possible that this is all coincidence? Or did she leave behind a little message that we are all to live life well? I never asked why I got sick. Ellie never asked "Why me" either. If we want to make Ellie's life a blessing, I think it would be to love and to live fully. To be able to say 'L'Chaim' or 'To Life' again. In time. Maybe someday soon.

I love you sweet girl. We miss you like crazy. I promise to take good care of your daddy and Hanky.



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