At the writing of my last post, July 2011, I could not have imagined the ways in which my life would change forever in the following 6 months.
Life with L has continued to change and grow, and I am still blissfully happy with him. He is my best friend. He is the love of my life. He went out and bought me a very expensive diamond ring, and I said, “yes.” We’ll wait until I’m finished with school, but I am so very certain that he is my partner for life. The kids have mellowed significantly toward him, which is wonderful. We’ve all settled into a peaceful existence, moving forward and being respectful and genuinely caring toward one another. All of us.
In mid October of 2011, my sister wasn’t feeling well. She had just earned her master’s degree in special education. This was no small feat, considering 2 of her 4 children have some form of Autism, and she was a single mother trying to put herself through school. Three months after she earned her degree, she finally found a job. She was ecstatic. Two weeks into her new job, her coworker brought it to her attention that my sister’s eyes were yellow.
There was much testing. There were MRI’s and biopsies. There was no cancer, thank GOD. There was, however, significant scarring on her liver of an unknown origin. There was much theorizing about what caused it, but the urgency to talk about getting her on the transplant list, in case her liver couldn’t correct the problem, became the top priority. Somewhere around November 14th, Tammy was approved to go on the transplant list. She was too sick to be eligible to receive a partial from one of us. She needed a liver immediately. The cause was deemed to be zithromyocin toxicity. An antibiotic she had taken for a sinus infection had caused a rare side effect and damaged her liver. I began to feel fear. Tammy, my best friend since birth, was really sick. Really sick.
Liver failure is a devastating illness. My incredibly intelligent, articulate sister could only moan and squeeze my hand. She could no longer make it to the bathroom. Her mind was overtaken by encephalopathy, and she could not piece together coherent sentences. They were doing their best to keep the toxins from building up in her blood, and it was initially successful. November 11, she was talking again. I asked her if she was scared. She said, “A little bit…”
The following Tuesday, November 15, I went to see her after a busy weekend, when she had lots of visitors. She was worse. So much worse. Around lunch time, she was moaning and writhing, and I looked into her eyes, hoping to see some semblance of my sister. I was terrified. My mother and I watched the nurses try to make her more comfortable, to no avail.
She turned her head, and something black came out of her mouth. We grabbed the nurses, shook them and asked what in God’s name is that coming out of her mouth. Within seconds, they realized her blood pressure was droping and they called a code. Her heart stopped. We were whisked into the hallway to make way for the 30 something medical professionals who rushed in to tend to her. My mother, the hardened deputy, started to panic and talk about how we were losing her. I held her hand and choked back panic of my own, telling her how amazing this hospital was and we shouldn’t react because we didn’t know what was happening yet. The cold metal bar in that hospital hallway was the only thing keeping me upright. After what seemed like forever, they had her heartbeat back and she was transferred to the ICU. They were frantically trying to keep her blood pressure up by giving her blood products, and had a few ideas on how to stabilize her, but she had to be removed from the transplant list.The gave her blood products all night, keeping her alive. They balanced her blood chemistry and tried everything they could think of to resolve her crisis.
On November 16, 2011, the doctors told us she was bleeding from every orifice, and they could do no more for her. Her husband couldn’t face the sight of his wife in the ICU, so my mother and I went in to be there for her final moments. My mom and I each held her hand, brushed her hair and let her know we were there. We promised her we would take care of everything, and it was OK for her to go.
And she did.
My beautiful, musical, artistic, intelligent and in all other ways amazing sister died. She left behind a 20 year old son, an 18 year old daughter with Asperger’s, a 16 year old son with Autism, and her baby boy, 9 years old.
Since her death, our lives have been forever changed.
After much discussion, the care of her children with developmental disabilities has now fallen to me. Her daughter lives with us, but we are running out of room, and are looking for a larger place. Her now 18 year old son with Autism will hopefully be coming to us this summer. Tammy’s husband has a strong bond with the youngest, and, while he is not completely against letting me have him, would prefer the little guy stay with him.
My mother, my father, and I are working together to help decide how best to care Tammy’s children. The irony that I am having to learn as I go to care for the children of the sister I have lost, who had a master’s degree in special education is not lost on me. My mother and I didn’t have much of a relationship before Tammy’s death. We are now very close.
During my sister’s memorial, L had a chance to meet my entire extended family. And friends, he shone like the diamond he is. He stood by my side, offering help, getting ice, running people around, and holding me when I lost my shit. He is the first man my mother has ever approved, and she has done so overwhelmingly.
Life is so strange.
There is so much to do. It’s overwhelming. I feel very lost sometimes. But I will do this.
I can hear my sister asking me, “Are you scared?” A little, Tam. A little…