Experiences in Love: Nichole Sneed

by Nichole Tia

She was amazing.

She was the embodiment of joy.

She was beauty personified.

She was.

Ka’niyah Shantel Walker was born on July 5, 2010, and our family celebrated in our usual family. In a family full of women, you would like another girl child wouldn’t be much of an event, but she was something special. I wasn’t there for her birth, but I do remember the first time I saw her. I went to visit her mother with the primary purpose of seeing her newest baby girl. Ka’niyah was the youngest of three girls, but you wouldn’t know it by her attitude. Like our elders like to say, that child had been here before. When I came in the door, I heard this little voice in the background speaking gibberish with the authority of a military commander. Then she appeared from around the corner, and she’s just this little bitty thing with her tongue partially out of mouth looking at me like, “Who is you?!?” Her mother introduced me as her Auntie Nikki and told her to say hi; she proceeded to come to me and held up her arms to pick her up and just gave me the biggest hug. I stayed there until late that night catching up with her mom and the other girls but mostly playing with Ka’niyah, and we became fast friends. This also started our tradition of always taking selfies when we’re together. I can still hear her saying, “Auntie, pishure???” as soon as she saw me. If I only knew how little time I had.

Shortly after Ka’niyah was born, she was diagnosed with Beckwith-Wiedemann syndrome (BWS) which can make specific body parts abnormally large. In Ka’niyah’s case, the syndrome manifested itself when the doctors identified her macroglossia (abnormally large tongue), and she was subsequently scheduled for some surgeries to reduce the size. The procedures were necessary since her tongue was interfering with her breathing and was making food consumption difficult. At a young age, Ka’niyah was already enduring more pain than most people experience in their entire life yet; she was amazing through it all. It was like she was giving a living lesson on resilience. She would be down for a little while but she would bounce back so fast you would forget that she just had surgery. Our family was happy because while macroglossia can seem debilitating it’s a correctable diagnosis. What we weren’t prepared for is what happened next. Children with BWS have a higher risk of developing childhood cancer with about 10 percent developing tumors, but most often they are benign. The odds were low, so we had no concerns about Ka’niyah developing cancer especially since she was getting screened regularly. The screening window for childhood cancer to develop is between birth and 8 years old…Ka’niyah made it to almost four years old. Doctors diagnosed her with liver cancer, and she immediately began chemotherapy. The treatments were aggressive, and they took a heavy toll on Ka’niyah, but she never stopped smiling. Her mother and I had a falling out, and I didn’t see Ka’niyah for like a year or more. I would hear about her and how her health was through other family members, but my anger at her mother was such that I knew it better to keep my distance.

It was the summer and I had scheduled an appointment to get a tattoo done by Ben Ochoa. Like, you don’t even know. I was SUPER geeked about this, laid out money and everything. This was a big damn deal. In the middle of the session, I get a phone call from my aunt who lives in the area, and she tells me she has somebody who wants to speak to me. I’m thinking she got some random distant ass relative she’s about to put on the phone, and I gotta pretend like I know who I’m talking to…then I hear that voice…

“Auntie, where are you? I want to see you.”

Instant. Damn. Tears.

We talk for about five or ten minutes then I decide that I gotta go, I have to see her. I made my apologies to Ben and raced over to my aunt’s house half-done tattoo and everything. A random family gathering seemed to have decided to occur to celebrate the birthday of another cousin, and that’s why Ka’niyah, her mother, and her sisters were in the area. She ran and jumped into my arms squeezing the life out of me. Her hair had grown back in thick and luxurious; she was in remission. We laughed and played and took a bunch of selfies. Her mother and I reconciled over a couple of drinks. I had my Ny-Ny back. In the fall we learned that cancer had come back with a vengeance. More aggressive and painful chemo was administered, and my baby lost all the hair she just got back. The prognosis wasn’t favorable, and they told us to enjoy every moment we have left, so we celebrated Christmas that year with the mission of making it one of the best Ka’niyah has ever had. My mother and I got Ka’niyah this enormous Care Bear that was almost twice as big as her. She tried to carry it around with her all day, and it was adorable. I held her every chance I got, carried her on my hip like she was an infant, fell asleep with her on the couch, not a moment wasted.

Ka’niyah fought hard, and she fought long. Her strength awed and humbled me. It was summer again when her health declined for the final time. I was living in Los Angeles, and Ka’niyah was admitted at Loma Linda University Children’s Hospital. I would make the drive as often as a could and as much as my job would allow to see her. It was June 1, 2016, when I got the call I knew was coming but was hoping never came. It was like it didn’t register at first, all I knew was that I had to get to the hospital. I called my mom and let her know what was going on and to see if she could meet us there. My big brother was already on the way home from work so by the time I was ready to get on the road he was at the house, and I drove like a maniac. We entered the room, and she was so small in the bed it was like it was swallowing her. You could hardly recognize her from all the weight she lost. The life had left her body, but I could still feel her presence in the room. It was at that moment that I cried. I cried hard and long.

The summer I found out Ka'niyah was in remission.
When I got to my aunt's house she wouldn't let me put her down lol
Taken after she began chemo again.
I just wanted to take it all away and for her to be well.
The last time I got to hold her until she fell asleep.

I cried because I blamed myself for not being there and losing that time with her.

I cried because so much of her time on this earth was filled with pain and hardship that was unnecessary.

I cried because she should be here.

I still find it hard to speak to her at length without crying. Even as I type this, I’m fighting to see through tears of regret that I still have because I feel like I abandoned her at a time when she needed me the most. I hope she forgives me of my stubbornness and my pride.

She is my love.

She is my goddaughter.

She is my angel.

She is.

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