Worldwide Candle Lighting 2009

The Compassionate Friends' Worldwide Candle Lighting
TCF Media Stories
TCF Remembrance Book



"I light this candle in the name of Sekai Ayinde Williams."

My friend Lenisa lit this candle in the memory of Sekai.

My friend Angela lit this candle in the memory of her sister Audrey.

Liberty

One day as we were talking about his past, and his feelings about it all, Sekai said to me, "They took my liberty." I asked him to explain what he meant by liberty. "You know, liberty, freedom...to make my own decisions..." He went on: freedom to use his powerchair, to go to a school that would teach him to read, to see his friends outside of school, to be able to walk, to live with his family. "To make my own decisions about how I want to live my life."

Months later as I was helping him get ready for bed, Jeopardy was on in the background. Alex Trebek: "'Give me liberty, or give me death.'" Sekai: "Ooh, that's a good one." "Yes it is," I replied at first, thinking he was talking about it being a good question since people probably knew it, or maybe that it was a good quote. Then I considered the words, and quickly added, "...but not for you!"

Now, I wonder if he knew about the Convention on the Rights of Persons with Disabilities, or the Convention on the Rights of the Child, neither of which have yet to be ratified by the United States.

He did not believe he would ever have his liberty...

Intersections--more about Sekai

Sekai's story crosses so many roads, sits at so many intersections. The book on his life might contain the following index:

Abandonment
Adaptations
Adoption
Adoption disruption
Anxiety
Aspiration
Aspiration pneumonia
Assessment
Babies, "crack babies"
Babies, conceived/born in prison
Beliefs
Boarder babies
Boarder baby homes
Cartoons, characters
Cerebral palsy
Child abuse
Child neglect
Child welfare
Chocolate
Choices
Christian contemporary music
Cognitive impairment
Colors, bright
Cover-up
Dependence
Depression
Despair
Disability
Disney
Doctors
Education
Education, right to
Employment, right to
Fear
Foster care
Freedom
Funeral services
Gastrostomy-tube
Gospel music
Grief
Group homes
Heaven
Helplessness
Hoplessness
Hospitals
Inclusion
Independence
Interdependence
Juice boxes
Law, legal issues
Learned helplessness
Learning disabilities
Liberty
Lies
Medical appointments
Medical malpractice
Medical neglect
Milkshakes
Modifications
Mopping
Movie: "Bolt"
Movie: "Camp Rock"
Movie: "High School Musical"
Movie: "High School Musical 2"
Movie: "High School Musical 3"
Music
Musicals
Nickelodeon
Nurses
Police
Post-traumatic stress disorder
Psychiatry
Psychology
Radio DJs
Reactive airway disease, asthma
Reality television
Respite
Reunion
Rights
Seclusion
Segregation
Seizures, febrile
Self-determination
Self-injury
Separation
Social work
Song lyrics
Song: “Always”
Song: “I need to find you”
Song: “Life is a highway”
Song: “You are my sunshine”
Sorrow
Special education
Substance abuse and children: drug/substance affected children, prenatal exposure, substance exposed newborns
Suicidal, actions
Suicidal, thoughts
Structural sin
Terror
Trauma response
Tube feedings
Wednesday’s child


I'm not sure why it occurred to me to write this, exactly. Surely his life was so much more. But I guess my point is that surely at least one aspect of his life has to do with at least one aspect of your life. Maybe that will make his story more personal.

So Blue

I've fallen behind on laundry. On everything really. Some days somethings (most things) just don't matter much to me. But yesterday, fueled by the need to have clean clothes to wear and caffeinated hot chocolate too late in the day, I finally set about getting some loads washed. In the corner of the laundry room, a tiny reflection caught my eye. The letter on one of his sneakers has reflective tape. Note to self: I must move those in to the storage room where the rest of box-upon-box of all-things-Sekai sit and wait for me to figure out what to do with them.

Not that his belongings aren't elsewhere, but their placements are well thought out. The Mach 6 is in the coin tray in my car. (The Mach 5 was placed in his casket with him, along with other toys and belongings.) The "Move it, move it" Happy Meal character is on my desk at work. (The other one is in his casket as well. We broke our family rule and went to McDonald's twice in one week because though he had given me his character, he suddenly recalled that he was a busy collector, who was now, he claimed, vexed over how he would ever be able to sell them on EBay if his collection was incomplete and...which was code for, Mom, please get your own. So I did.) His little red 101 Dalmations cap from when he was a toddler next to his little Red Chuck Taylor high top next to his bronzed saddle oxford shoe next to the silvered one with the still-empty frame because I cannot bring myself to cut any of the pictures now all sit on the mantle with Blue, his teddy bear.


So Blue is wrapped in plastic wrap and I'm not sure he'll ever be unwrapped or what to do really. When Sekai was taking leave of his body, someone pressed Blue in to my arms for me to focus on. Sekai got Blue when he was 2 years old, and I kept him for him over the away years, just as I had kept the hat, the shoes, other toys, clothes, pictures. He was amazed that I would do this for him. He was amazed that I actually believed I would get him back, that I would even see him again...and it hurt him, since he had long since given up all hope. Even as a teenager, Blue was important to Sekai, important to me, as a symbol of our family ties.

So Blue was clutched in my hands that night while I paced in his room, listening to them trying to get his heartbeat going while he lay on the living room floor. I clutched Blue while I stood in the rain, looking through the ambulance windshield at them trying to get his heartbeat going while he lay on the gurney. I clutched Blue while I listened to them tell me they could not get his heartbeat going again. Somehow I was still clutching Blue when I scooped my baby up into my arms and held his lifeless body. And his life seemed to literally be running out, as the blood from the respirator tube dripped over me and over Blue. I asked them to please take that thing out. I really don't understand why there is a problem with removing the tube once someone is gone, but I don't think I want the medical explanation either. It would just be easier for families, that's all I'm saying, especially when the nurse removes the center piece but not the whole tube, thereby creating a vacuum and a straw by which one's son's body will seep blood on to one. So, in the process, Blue became blood-soaked. And I can't bring myself to wash him. So I wrapped him in plastic. At first, Blue sat by the door where I had placed him when I came in that night. Days passed. Then I realized he probably needed a bath, but I just couldn't wash away Sekai. Some days, I think about where science is going and I wonder if they could clone him. When I went back to the apartment to get his wheelchairs, I found hair on one of them from the last time I cut his hair. I picked it up without thinking. Something of a jolt went through me as I realized I was holding part of him, in a way that I could never again do for real. Again, the cloning idea crosses my mind. Don't judge me.

So Blue, in his plastic wrap, has been carefully placed on the mantle, just as many things have been carefully placed either in plain view or tucked away. But then there are those things that I come across at unexpected moments, like while doing laundry. I passed what appeared to be a piece of clear plastic on the floor last night, and reminded myself to go back and pick it up, but with laundry in my hands when I went upstairs at the end of the night, I guess I forgot. When I went down this morning to get the last of the clothes, the light caught this barely visible object, the glint caught my eye again, and I stopped to pick it up. It wasn't trash at all. Inexplicably, one of Sekai's bracelets was there on the floor. When he was in the hospital after removing his g-tube, where he remained for several weeks after insisting that he didn't want nutrition, he went to an event sponsored by Child Life wherein they gave out those affirmation bracelets that were so popular. He had them in various colors, stamped with various encouraging words. The one I found this morning: STRENGTH. Thanks, Sweet Potato.