I Want You To Meet Emily
On August 19, 2021 I was laying on a mattress on the floor in my apartment, having arrived the day before with the hope of getting a rest from the nightmare that had quickly become a part of my life. I was exhausted and depleted from the last 37 days spent in the hospital with my daughter. I received a phone call that propelled me to make the decision to crawl off of the floor and head back to the airport.
Talking to the Nurse Practitioner from Beaumont, en route back, confirmed that Emily’s chances of surviving the weekend were very slim. Her words, “she won’t make it through the weekend,” are still embedded in my brain somewhere. Could that be? Could a 39 year old vegan, having never had a negative health history have such an advanced state of liver and renal failure that she could die from it and this quickly? Her first admission was 6/25/21. Her second admission began 7/10/21. Were the doctors right all along, that she only had a 20% chance of survival, from the very first day of admission? I couldn’t deny that her alcoholism was severe and there was possibility that the psilocybin that was given to her unknowingly pushed her into hepatorenal failure. My daughter’s life was not supposed to end this way.
I remember meeting her for the first time. I was 18 years old and living with my boyfriend who was Emily’s biological father and whom had more than joint custody as her biological mother struggled with addiction. I quickly became a parent to her too, wanting her to have an amazing childhood and became the most consistent person in her life.
She had light blond hair and striking blue eyes. She was chubby and innocent, reserved, contemplative and beautiful. It wasn’t long before my now-husband got full custody of Emily in part due to her birth mother’s addictions and in part due to her birth mother’s willingness to do what was best for Emily. [I still get a little jealous, knowing that they’re now all together, Emily and her biological parents, but my higher self is happy for all of them being reunited.]
By 8 years old, after years of being separated from my husband, I got full-custody of Emily. This is a feat not easily accomplished by non-biological parents. We all knew that Emily belonged with me and her two sisters. She always lived with me. Our home and her sisters were a constant in her otherwise chaotic life. This fact, that Emily was not my biological daughter, may come to a surprise to many. Even Caitlin, my youngest daughter, did not know this until age 13 or so. There had been no evidence of anything other than them all being my birth daughters.
There was nothing more that I wanted than to raise my three girls, focusing on a happy and healthy childhood. I wanted her biological parents to recede into the past and for the four of us to be our own island. What little I knew about how unhealthy that vision was. Time has taught me well.
I wish that I had encouraged and supported relationships with their birth parents, all of my girls.
Emily loved animals, especially dogs and horses. She loved My Little Pony, playing outside, camping and Girl Scouts. She could be aggressive, often missed social cues and was so very smart. She became very jealous of Megan, who I doted on from the start.
Things became hard between my husband and me and it wasn’t long before I ushered him out of our lives, just in time to give birth to my youngest daughter, Caitlin. Many regrets are in between the lines here: if only my husband and I had gone to counseling, if only I didn’t show so much favoritism to Megan, if only I had been a better wife/mother/person. I can’t stay in that neighborhood too long or it will poke its long bony fingers into my heart and soul. I can’t let it take me. I won’t.
Onward:
Emily was a spectacular student: reading and writing by age 4, in the gifted program in Chicago followed by the International Baccalaureate Program along with scholarships and awards and having been captain of her high school tennis team. She was a vegetarian by age 10 and a strict vegan by age 17. She moved back and forth to Chicago, Colorado and Michigan, rescuing dogs, spending time with friends, working diligently at restaurants, always preaching vegan-ism and eventually going to Rouxbe, a vegan culinary school. While often struggling with depression and anxiety.
When I was 50 years old, Emily took me to her favorite restaurant in Oak Park, Munch. We had what we in “the work” of therapy call Full Expression with Mom. She shared with me many of the ways that I had fallen short with her; ways that I had hurt her and how she was affected by this during her 32 years. It was one of our best moments, authentic and true and I loved her for letting me own my mistakes. I loved her for trusting me to hold space for her without defensiveness or justification.
Man, had I messed up! The wisdom of aging has caused me to appreciate these moments, as raw and uncomfortable as they may be. And it has caused me to be compassionate toward myself for what I didn’t know then.
Now we fast forward to June 25, 2021 when Emily’s ex-fiancee called me to let me know that Emily had been hospitalized for Liver Failure. I flew to Michigan and stayed with her until she was discharged three days later. She looked awful, her belly distended and full of toxins, her skin and eyes yellow with jaundice and most upsetting, her face so full of shame. Her life as she knew it was over. Her perceived-future was cloudy, obscured from the sun.
Recently, she had gotten out of a toxic relationship and moved into her own place. She had started using her vegan culinary skills to cater events and had lovingly hosted some students from Turkey. A few years before she had gone on a volunteer trip to Costa Rica to rescue sea turtles. Her future looked bright. But anxiety and depression - untreated - can be more powerful than any good intention. Her second admission, beginning July 10, 2021, would be her last.
Since being diagnosed, I was given the opportunity of a lifetime with Emily: I had a second chance at loving her the way I wanted to, unconditionally. We were past the past.
Day in and day out, I stayed beside her, caring for her. I retreated to the hotel or the lobby or the Airbnb that Caitlin rented and then came back in the morning for more. Days filled with dialysis and paracentesis, administration of blood products, PT, listening to the experts, devising new care plans and eventually as hepatic encephalopathy took over, submitting to what was to be.
I would be remiss not to acknowledge my sister’s presence, or Caitlin and her family coming to stay with me or all of our friends and family who were traveling in spirit with us on that journey, every single day. I will never forget and always remember.
On this very day two years ago, 8/20/2021, before she was intubated for the last time, she put her hand on my cheek and we made eye contact. This moment is etched on my heart forever.
For hours, the committed team did massive transfusion protocol on her. They couldn’t keep up with the blood loss. Her belly was so obtunded that it looked like it would explode. The hepatoencephalopathy had taken over most or all of her cognitive abilities. No one could save her. I couldn’t save her. I saved her, or so I thought, when she was a baby and now…
It was humbling to realize my limitations as a nurse and a mother and to come to terms once again with the reality of never really having had control, but the thought of releasing her beautiful spirit to fly free from all of the pain that she experienced was a good thought indeed.
To know the legacy that she left, her loyalty to friends, her love of family and books, her commitment to the environment and especially to animals, is to know that she left the world a better place. I couldn't be more proud of my daughter.
A friend who recently died, told her children not to remember the way that she died but the way that she lived. Although the graphic and upsetting memories of Emily’s hospitalization are engraved in my mind, the beauty of her life is engraved in my heart.
She is now a part of the trees in Costa Rica, at North Park Nature Village, at the Lakehouse in Wisconsin and under the trees along all of the ways. That was her wish.
**Please remember that I write from MY perspective, from MY lived experience. It is always my hope that readers will learn something that they need to and that it will enrich their lives.**
