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.

Gotcha

Today is Sekai's Gotcha Day, or Gotcha Day revised, or Gotcha Again Day, or Gotcha Day Again. I just did a quick search to include a link about the reasons behind marking the day, and found all kinds of controversy. I'm not in the mood for all that. To us, Gotcha Day was going to be the day we acknowledged being together (again) as a family. Not his adoption day. We were supposed to celebrate that on National Adoption Day (we were supposed to be one of the celebrating and finalized families)...which happens to be this Saturday...which is the same day as National Survivors of Suicide Day. Did I mention how witty was my dear Sekai? And as I've said before, God has a sense of humor. Anyway, today is Sekai's Gotcha Day Do-Over. We had not decided exactly what we were going to call it. But we wanted to note the anniversary of the day that Sekai came home (again) and we became a together family (again). On this day, last year, Sekai came home. We should be celebrating. We should be getting ready to have our family "signed off on" on Saturday.

I think I may be numb. I thought I would be crying and immobilized, but I think I may be numb. I think I prefer it.

"How to Save a Life"

So, I'm a huge Grey's Anatomy fan, and I heard The Fray's song "How to Save a Life" long before it would mean this much to me.

Read more about the song here: http://www.howtosavealife.com/ and here http://en.wikipedia.org/wiki/How_to_Save_a_Life_%28song%29

See the video here: http://link.brightcove.com/services/player/bcpid348471276?bctid=353578845

Read the lyrics here: http://blog.thefray.net/us/music/how-save-life/how-save-life

Sekai, I prayed to God you'd hear me. Where did I go wrong? I lost you somewhere along in the bitterness. I stayed up all night after night after night, trying to figure out how to save your life.

Suicide Awareness and Prevention Week

Active Minds at Maryland partners with Suicide Awareness Health Education and Training (S.A.H.E.T.) to bring a week of activities to educate and raise awareness of suicide.

11/16 11a-2p: 'Get Your Stress Out' @ Stamp Atrium

11/17 6:30p: Ross Szabo (guest speaker) with No Stigma performing "What Smiling Faces are hiding" (Clarice Smith, Dance Theater - http://www.youtube.com/watch?v=Pn1GwgtPDfc)

11/18 12p-1p: Panel Discussion with 2 mental health professionals and 3 students who have suffered with depression or who have lost someone to suicide @ Stamp Colony Ballroom

11/18 3p-7p: Quilt Project for those who have lost someone, those who are struggling with depression, or those who simply want to support this important cause @ Stamp Colony Ballroom

11/19 10a-2p: National Depression Screening Day @ Stamp Food Court 'B'

11/20 10am-3pm: Quilt Display-The commemoration quilt created by the campus community will be displayed in front of Hornbake Library

11/21 1p-2:30p: National Survivors of Suicide Day @ Stamp Edgar Allan Poe Room

http://www.health.umd.edu/YouBelong2009Diamondback.pdf

A new take on visiting the cemetery

Yesterday, I re-set Sekai's birthday flowers and added a really nice bow. It was hard for me to go to the store to get the things that I needed. I would just get all flustered. And then I went two or three times and the floral arrangement specialist wasn't there, so I had to keep going back. Yesterday I was finally able to talk to her about how to reset the flowers. And while we were talking, Diana Ross' "Missing You" started playing overhead. I was flummoxed for sure, and had to fight back the tears. But then I thought, ok, maybe now she understands how hard this is for me. And now I'm thinking, hmmm, maybe that wasn't a coincidence.


Sekai's site is covered in straw again. Others who were laid to rest after June have grass. But his site seems to be settling still, so maybe they added more dirt, and therefore more grass seed, and therefore more straw. When we were trying to pick a site, I kept saying I didn't want to be one of those people who comes to the cemetery all the time. It took me weeks to even be able to go back after the service. I think I didn't want to go for the same reason that I didn't even get close to the site on the day he was laid down: I didn't want to be unable to leave the graveside. But now when I go, I feel better. One of the reasons I'm no longer sure about relocating is because his site is here. I'm not sure what it is, but when I go to the site, I feel less...I don't know. It isn't less pain. But there is an odd comforting feeling. For one, I think I like to see his name in print, like to see him recognized. But I also think it is because I can look and see that no more harm has come his way. A deep sleep has befallen him. He's waiting for Jesus to return. His soul has left his body. He hangs out with Jesus all day. Any of those, or combination thereof, or perhaps even alternate interpretations, means that he is at peace. That's what he wanted. How can I want less than that for him?

I'm reminded that people used to lay their kin to rest in their backyards, and I guess some folks still do, though it is illegal around here. I can see the value in that. I used to think that it was a bit morbid to think about kin buried in the backyard, or even like in those cemeteries beside churches. But I get it now. I like to be able to go and see that he is no longer in pain. I'm considering moving closer to Sekai's resting place. I know. I'm surprised, too.

Sticks and stones/haters

You know, I used to buy into Katt Williams' idea of letting haters propel you to be your star player. And I used to blast Jill Scott's song "Hate on Me"...but since Sekai left, I skip it when it cues up on my DVD.

The problem is that not everybody can take that kind of thing as fuel to press harder. For some people, like Sekai, it confirms the deep-set, nagging, cutting, poisoning belief that one is not as human, as important, as entitled to a space on this earth. I hope we all learn to stop.

Sticks and stones

short bus
special bus
special
retard, retarded
spaz (which references spasticity; apparently the term has become so entrenched that the origin is no longer widely known)
cripple, gimp--though a friend is helping me understand that it is like the n-word and some within the community are reclaiming it through transformative language, much as our friend Dan Keplinger has done with his title of King Gimp. (As Dan states in the film, gimp also means "fighting spirit".)
wheelchair kid, wheelchair as descriptor for a person who uses one, wheelchair-bound or wheelchair-confined, or anything else that suggests the person is a Transformer and this piece of assistive technology is an actual part of their body
helmet-head
whack-a-doodle, casual reference to a need for meds, any slang reference to mental illness, or reference to behavior that suggests mental illness
I'm sure there are more, and maybe I'll add to this list. And I know it is usually better to speak from the positive perspective, as in "use these words instead", but I'm stacking them this way for a reason. Because these are the words, terms, sentiments that Sekai heard--or worse, felt--over and over and over. So the next time you think using one of these terms is funny, please stop and ask yourself, which aspect of Sekai's being, or that of any number of people who have disabilities, do you find hilarious enough to use it to mock someone else?
This is not a rant. It is a heartfelt plea from a mother who watched these words cut her son down to the point where he felt like there was no place in this world for him.

My son died

I've changed my mind. Or maybe it is just different today than when I wrote about this a few weeks ago. My son died. This horrible thing happened to him. This horrible thing happened to me. The thing is that my son died. And so that's the end? No, that isn't the end at all. My son is dead. My son died. And nothing much makes sense anymore. But I'm trying. For him. For all the others that he wanted to save.

How many children have to die...

...before the system is changed? I was hurt when I thought that the problems were yet to be identified and acknowledged, that maybe people didn't care because they didn't know. Now, I am brokenhearted after learning that the problems have been known, discussed, debated over and over again, year after year, death after death. People know the system is deadly. THE SYSTEM IS DEADLY. Children are dying, and the root cause is known. What is an acceptable number? If one child is just an individual situation, if the aggregate data show that it is more than one child but the issue is not one that is crucial enough or at least not to the powers that be, how many children have to die before the system is actually changed?

Dear friends

People don't know what to say, what to do. They don't know how to help. That's what I've been told. I know people want me to move on, to talk about something else. But really, what is there? My son is no longer alive. My son didn't want to live, was afraid to live, because of what had been done to him, and by people who were tasked to take care for him at that. So, no, I don't really have anything else to talk about. Except, sometimes I do. Sometimes I can talk about what is happening in the rest of the world, what is happening in the lives of friends, what is happening outside of my pain. Sometimes I run off at the mouth about work, friends' upcoming nuptials or new babies, movies, my favorite shows. But sometimes, I cannot. And I'm sorry, but I cannot pretend just so that others feel more comfortable around me. I cannot even pretend so that I feel more comfortable around me. Dear friends, I can be happy for you and sad for me at the same time. I can even be sad for you--it's ok, it won't make me sadder. Well, it might, but that's ok. I pray you never know this pain that I cannot shake, and I pray you can understand that I am doing the best that I can. There is no moving on. There's just...this weird sort of going on. Prayerfully.

Dear God

Dear God,

I am angry at you. I am mad at you. In elementary school one of my teachers told us that people get angry and dogs get mad, but I know now that mad is also used to describe a sort of out-of-your-head type state. And so I am angry at you, and I am also mad at you.

You know that already, I know. But I want to clarify. Yes, I am deeply perturbed that you took my son to heaven, except that doesn't make sense to my analytical self. He was hurting, had been hurting for a very very long time. So taking him to heaven relieved his pain and afforded him eternal comfort and Love. Thank you for comforting and loving him. But I cannot understand how you allowed him to hurt for so long. How you allowed him to be hurt in the first place. He asked me once if you were dead. He asked me if you hated him. I didn't tell him that sometimes I think the one you hate is me. I prayed to you for eleven years to keep my baby safe, and to bring him home. What gives? How did you allow him to be so ignored, so hurt, so broken? To lose touch with all that is good and beautiful and joyous and holy? I prayed that you would send someone to love him and take care of him. OK, so he had a few people to love him, but it seems from afar. Thank you for those people who loved him at least. But why!? How!? Where were you? How did you allow this to happen to him and for so long?

I know, I know. Adam and Eve sinned and sin befell man, humanity. I get that. But this child here is my son. Couldn't you have protected him? And what were you two talking about in there when he was supposed to be falling asleep? He spoke as if he were some type of martyr or something, telling us over and over that he was going to heaven. Telling me over and over that he wasn't going to be able to go with me to tell the world to do right by children in foster care and by children who have disabilities, but that I should do it. Asking me over and over, "what will you do when I am gone?" Hmmm. He also wanted me to tell people not to take children from their mothers who love them. So, dear God, please don't take children from their mothers who love them.

Yes, I know, I know. Mary's Son was taken from her, and Jesus saved the world. Thank you for that, for Him, really, truly, sincerely. But this child here is my son. And I am angry at you.

My son is dead

My son is dead. I don't usually say that, or rather, I don't usually say it like that. I usually say that he passed away, crossed over, or sometimes I even say he died. He passed away or crossed over sound like something warm and fuzzy happened to him. He died sounds like he achieved something, and well, maybe he did. But I don't usually say he is dead. But he is. And that's the thing. The thing is that my son is dead. And so that's the end?

When I lost him the first time, when he was snatched away, there was the recognition of the initial horror, tremendous flurry of activity, crying and screaming and telephone calls and court hearings. Years passed. Years. But I was always living as the woman whose child had been taken, and my actions were always viewed through that lens. I stopped going to church on Easter because of the children's parade, stopped going on Sundays when the children's choir sang; on the other hand, I poured myself into my teaching job, and made myself available to friends who had young children. And I kept fighting and praying and fighting. Until--miraculously--he came home. I won't write about his coming home in this space at this time, but the point is, he was taken, gone...and then back.

I cannot even say he has been taken this time, though sometimes my feelings boil up and over and I cry out to God--ok, I yell and scream--asking why He took my son. But I think they had an arrangement. I really do. Sekai often thought out loud. His self-talk was often audible. His prayers were audible beyond his bedroom door. Not that I could understand what he was saying, but I could hear that he was talking. I walked in once to get something or do something and I thought he was just thinking out loud, but he very quickly let me know that he was talking with God and I very quickly backed out of his room. Even the way that Sekai talked about "there's no place for me on this earth" and "I want to go to heaven; I know you're not prepared for that mom, but you need to know"...or maybe it was "you need to understand." At any rate, he was going. He told me that he had made up his mind a long time ago. "I"ve been working on this." And we worked, I worked, we worked to get him to change his mind. I won't write about that in this space at this time, but the point is, he was back...and then he was gone. Again. Permanently.

My son is dead. It doesn't go away. I am the woman with the dead son. He isn't coming back until Jesus returns, and even then, maybe he isn't exactly coming back, depending on which interpretation one holds to in terms of the Second Coming and the end of time. Interestingly enough, Sekai used to ask me on a regular basis, "When is the world going to end?"

Sometimes, I feel like mine did on June 10, 2009. My son died. My son is dead. And nothing much makes sense anymore.

Birthday memories

Good morning, Sunshine. Happy birthday, Sekai Ayinde Williams!

One friend has been trying to agree to make today a celebration, to actually celebrate his birthday. That's what I planned originally, and two friends volunteered to help me plan a friends and family game night. My goddaughter Nicci's birthday is also today, and she wants me to come out to dinner with her and her twin brother. I wanted to pass out juiceboxes or chocolate or buy milkshakes for strangers, all in Sekai's name.

I don't know that I will do any of that. I am planning to go to the cemetery, and maybe sing, and maybe leave flowers or maybe balloons.

But first (cue the game show-style happy happy music), a few birthday memories!

For Sekai's third birthday, we went to one of those indoor amusement park places that serves pizza and has musical shows on stage. Sekai had a blast. He had pizza and more pizza. He played in the ball bath with Lady, his other godsister, and godfather. He went on the helicopter ride with his Nnenne (grandmother) and friends. He went on the dinosaur ride with his buddy and his mother, who is still a dear friend of mine to this day. He and I played in the tunnels, and slid down the slide. Then we all enjoyed cake and ice cream and Sekai opened his presents. It was a typical, loud, overstimulating, fun, funny three-year-old birthday party. Having spent his first two years in a boarder baby home, it was his first real birthday party (though he had small parties at the home, and he had parties in his early intervention class--I think we had cupcakes in class for his second birthday).




For Sekai's fourth birthday, I planned a party at the local regional park. They have a train, a carousel, and a petting zoo, and I had reserved a room in the center instead of a table in the park, because October weather can be unpredictable. Unfortunately, we didn't make it to that party. Sekai was in the hospital. So we canceled that party and decided to go to the fire station instead. (The park suddenly felt too unpredictable, and he was so fragile at that point, I just didn't want to take any chances. And what could be safer than a party with a bunch of EMTs?) Unfortunately, his discharge date kept changing, so we had to put off the idea of a party altogether. But the firefighter who was helping me with party plans kept calling to check up on him, and seemed as sad as we were that the party might not happen at all. When he was finally discharged, she invited him in for a personal visit! He was such a huge fan of cars, trucks, and engines by that point. For his birthday, I gave him a remote control race car. We would go down to the parking lot, he would stand in his stander and use his tray to rest the remote, then he would race the car all over the parking lot. One day, we were expecting a visitor. She didn't realize we were outside. As soon as she was within range, Sekai ran over her foot with the race car. I'm sure the shrieks could be heard across the complex: she had no idea what was at her feet, and Sekai had fallen into near-hysterics. Her birthday gift to him was a fire engine with umpteen noise-making push buttons. Ok, so she got me back. But it was ok, because he loved that little engine. Some nights, he took it to bed. (Thank goodness it had an off switch on the bottom!)


He was not home for his fifth birthday. Nor his sixth. Nor his seventh. Nor his eight. Nor his ninth, tenth, eleventh, twelfth, thirteenth, or fourteenth. I understand his social worker made sure he had a birthday cake once she got his case. And I imagine that his teachers gave him parties at school.

For his fifteenth party, he was not home yet, but we were finally doing visits. We planned a multi-day birthday extravaganza. That Wednesday, his birthday, I picked him up after school. He wanted to go to school on his birthday so that everyone could wish him a happy birthday. We left there and headed to the hotel. (A friend arranged for the room. Thanks!) Ever since we started talking about him coming home, he had been asking me for a sleepover. He kept saying he had never had one. (He had had sleepovers of sorts with his godsister when they were both very young. And one night, one of his "aunties"--a dear friend of mine and his--and her kids came over after work, and we ate carry out, watched movies, and all slept in the living room. But I could not tell him this because I was not yet permitted to tell him who I was really.) So anyway, we headed to the hotel where four friends from church were going to join us. One mom--a friend of mine--also stayed to assist her son, who also has CP. The boys went swimming in the pool and hung out in the hot tub (another first for Sekai), ate junk food, opened his presents (Iron Man DVD and Jonas Brothers CD)and rented Star Wars Clone Wars. We were so sure they would fall asleep before the end. Two of them did. The other three were so wide-eyed that when I went from our room to their room of the suite through the connecting door, I could see their eyes before I even entered their room. Their eyes, needless to say, were glued to the screen.

The next day, Thursday, was Yom Kippur, and the schools were closed. We had continental breakfast from the lobby, then lunch at Wendy's. Sekai had...wait...for...it...chicken nuggets! Then two of the boys went with us to the movies to see Beverly Hills Chihuahua. He asked if they could go alone, and I told him I would stay close, but try to leave them be as much as possible, and if all went well, we could talk more about him going out with friends independently. We didn't have the van yet, so he was in a manual chair, but his buddy took the handles and off they went. I sat near enough to reach him, but far enough that he could act like I wasn't there if he really wanted to. He didn't. That afternoon, my godchildren (not the same ones mentioned above; yes, there have been a lot of them, lol) who missed us for the movie invited us to join them to go out to the horse ranch owned by the man who ran the camp that some of the boys had attended. They met us at our house, gave Sekai an art kit (which they called a family heirloom since I had gifted the oldest child in that family with the kit years ago, and he had passed it down to his younger siblings, who were now giving it to Sekai), and performed for him a song that included the lines, "you're a super star...one day we'll see you on Disney..." Then we went to visit the horse farm. Sekai enjoyed watching the horses, and enjoyed meeting Buttercup. Buttercup apparently enjoyed meeting Sekai, too, and tried to help him with the snacks he had dropped in his seat.


Friday we went out with the same family friend who had helped Sekai and her oldest son ride the dragon ride at Sekai's third birthday party. This time, she was accompanied by her little girl. We caught a water taxi from one town to another, and enjoyed a fabulous seafood lunch. Sekai wanted chicken strips, of course, but after some conversation, he agreed to try the fried shrimp. He enjoyed them so much that he asked for more, and then asked for them each time we went out to that kind of restaurant. With a sundae up next on the list, he decided to pass on the seconds of shrimp. And a good thing, too! The waitress was enchanted by Mr. Charisma and though his meal came with a single-scoop sundae, she brought out a double-scoop sundae, with extra fudge, whipped cream, cherry, and back up singers to help us sing to him for the third day in a row.

On Saturday, we had a good ol' backyard birthday party with family and friends. Sekai said it was his first birthday party at home. He asked for chicken and mashed potatoes and green bean casserole. And of course juice boxes and cake and ice cream. He opened more presents: lots of cards, great movies, and plenty of toys and games from friends, and an M&M candy dispenser. Clothes from Nnenne and Skip: blue corduroys and coordinating green/blue plaid button-up and green corduroy shirt; black corduroys and a red and white sweater, and another white sweater. I'm listing out the clothing items because Sekai listed them out whenever he was asked what he got for his birthday. On many occasions, he asked to wear those clothes, specifically. They were his clothes, not hand-me-downs, but his clothes, purchased for him.


So, I'm not sure I'm in a place to really celebrate, per se, but I'm not falling apart, maybe because I did that already. Last night, I went to have birthday dinner with my goddaughter, who was known as my little sister before she became my goddaughter, and her twin, who I still call my little brother. Sekai shares their birthday. And they all have CP. I feel badly because in the years past, I have not always been up to celebrating their birthday because he wasn't home. This year, sigh, he is Home, but not here with me. So anyway, I had a great time last night, then sobbed and bawled and gasped all the way home. My little brother walked me to the car and as he was walking away, I called "happy birthday" and saw him turn and walk his baby-gazelle walk (I've always called it that. I don't think he minds. I should ask him.) and suddenly, the dam broke. But today, I am ok, so far. A few near tears. I think maybe I'm numb. Or maybe I'm just ok. I know a lot of people are praying for me today.

Today, in celebration or in remembrance or in memorial or whatever works for you, please remember Sekai. Please tell people to be good and just and moral and loving to children in foster care, to children who have disabilities, to all children. Please show the child(ren) in your life that you love them unconditionally, and tell them that they are absolutely wonderful, because they are fearfully and wonderfully made. Please share with children that they should be kind to other children because wounded feelings really do cause more damage than we might be able to see at the time. Please help current and future teachers, social workers, doctors, attorneys, and others who impact the lives of children like my Sekai understand that they are going to make a difference no matter what they do, but they have to actually work at it (and sometimes pray on it) to make a positive difference. Maybe give someone a juice box, or chocolate (Reese's, KitKat, and Hershey's chocolate bar were his favorites), or a milkshake (we didn't have them often--though he needed the calories, I didn't!), and tell them about Sekai.

Happy birthday to you Happy birthday to you Happy birthday, Dearest Sekai Happy birthday to you
You are my sunshine My only sunshine You make me happy when skies are gray You'll never know dear, how much I love you Please don't take my sunshine away (2nd verse) One night dear, as I lay sleeping I dreamed I held you in my arms I awoke dear, and found you missing And I hung my head and I cried

Happy birthday, baby boy

Tomorrow is Sekai's birthday. He would be 16 years old. Sweet 16, which Sekai agreed was ok to say even for boys. I realize I haven't posted in almost a month. Every time I go to write...I don't know. So this will be brief. I plan to go to his site around 5pm. A few family members and friends are also planning to come. Someone asked what will I do there. Hmmm, I don't know. Sing "Happy Birthday"? Leave flowers and balloons? I don't know. This isn't what I planned to do for my baby's sweet 16.

Three birds

I thought I posted this a while back, but when I went to link it to the Pablo post, I realized that I had written this in another space. This conversation took place via email when a friend was helping me to think through what had happened to my dear son, and helping me to fight back against yet another set of horrid lies cast my way. (And we were successful. Praise God!) After we wrote back and forth for a while, recalling, discussing, analyzing his experiences, we both took a break.

Then she sent me this email:
"I just went outside for a moment and got caught in a scene of three birds flying in front of a tree, which was rustling in the wind. For a minute there, it was Sekai flying and laughing, and everything was good. I know I never met him. But I feel very close to him right now. It's very strange."

To which I responded:
"We released three birds at his grave-side service. The lady released three doves: 1 representing Christ's ascent, one representing Sekai gone off to heaven, and one representing the rest of us who believe following when our time comes. The first dove and the third dove flapped their wings elegantly and floated away. The second one, the one representing Sekai, was beating his wings so hard and so fast, I could actually hear them, and I had to smile."

"There are signs everywhere, reminders everywhere, if we only believe. Thank you, God, for reminders and inspirations...

(I also wrote, "...and for people willing to hear and see and believe and willing to act. Thank you, Lord, for encircling me with true friends who have true compassion!" But more on that later.) (And no, it is not lost on me that Bob Marley sang, in his song "Three Little Birds", "don't worry, about a thing, 'cause every little thing, gonna be all right.")

Here at the beach, the seagulls have been hanging around, walking on the banister, gliding on the breeze in perfect alignment with the view through the screen door. And then there is Dexter, the hummingbird who visits the potted flowers on our deck at home. Get it, Deck-sitter->Deck-s'ter->Dexter? I can hear Sekai now, "Mom, you need some new material."

Pablo

I awakened this morning and slowly began my day. It is dark and rainy here and the wind is crashing heavily in to the surf. A good day for staying in and writing. Suddenly, I am almost knocked over by a flashflood of memories. I recall that Sekai had complained of the same thing. Sudden memories, washing over him, tossing him in the surf, throwing him on to the compacted sand, leaving him there roasting in the sun with his dried-up thoughts, and then picking him up and starting all over again. I didn't want to be caught in this tumbling, so I listened to and watched each thought, seeking the wisdom hiding there. And then the tears burst forth through the dam, dragging with them the cries that were not as stifled as I had thought. Then I heard it welling up, "Mommy, I didn't mean to hurt you." Sekai didn't call me mommy, but it would be like him to do that now, just to make me stop and think and question. Sarcasm. Isn't that the purpose of wit, to make a point, then cause the other to question it, and be lead to confirm the initial point? So I calmed myself with this thought, and then questioned why in fact I was having these thoughts right now. Ahh, it is the 10th. Again. At this time on this date three months ago, my son was still alive.

I decide to go outside, to scream his name at the wind and the waves, to share this cry, this prayer, that I carry in my spirit in my heart in my body in my mind in my mouth all day every day, and demand that the water and the air join in. The sea greets me angrily. At first I pause. Then I recall that I have survived laying down my son, and I tell the sea and the rain and the wind that I am not afraid. I yell at them: you remember Sekai. Even as I hear my own voice, I am not sure if it is a demand or an accusation. They continue to stir. I yell at God, "if you can stir all this, why couldn't you stir up help for my boy!?" I hear a response, feel a peace, a reminder that it wasn't meant to be. Even Jesus came for only an appointed time. No, I will not be comforted just yet. I start to scream, "I am angry at you". I am not sure if the words actually come out of my mouth because I have to stop and examine this. Am I angry at God? And if so, why, exactly? I decide that I am angry that things had to go this way, that my sweet potato is not here, that God didn't make it different, that my son was allowed to suffer.... I scream, "But I loved him so much, I tried to love him so much, he was such a beautiful baby, I did my very best, and he was so hard to love, so hard to care for, he didn't want my help, he didn't want to get better, and I tried to help him..." And then it crashes on the sand and bursts into tiny pieces, joining the foam at my feet. He is not suffering anymore. Appointed time. Purpose. The peace returns.

I turn to leave, having said my piece/peace, and been comforted in return. Then I stop, realizing I haven't actually screamed his name as I said I would. I turn back towards the water, I even turn to face the rain and wind straight on rather than having them at my back, then turn back to the waves and bellow "SEKAI!!!" Ok, I can go now. I take a few steps, then I find it. A tiny blue toy sticking up out of the sand. Ok, Sekai liked blue and was a big fan of toys (though he wasn't allowed to keep his when he was away). What is it? Oh, a bubble wand. I like bubbles. But it is a little kid's toy, so why...ahh. It is a bird! Again, with the birds. (More on this later.) Later, telling the story to a friend, I notice that the penguin is named Pablo, and I wonder if he is a Backyardigan. I just looked him up. He is indeed a penguin, so he is indeed a bird. Yay. He is also a Backyardigan...something little kids watch, so why...then I read on this site http://wrchildrensprogramming/pbworks.com/The-Backyardigans that Pablo "usually makes mistakes and is very self conscious at times." Check, and mate.

I know, Sekai, I know. I love you, too.

Signs of hope

In July and August, I did some traveling. I went to see dear friends who I knew would offer comfort and a safe space for me. I went in search of evidence of God, beauty, love, signs of hope.

These shells on Sanibel Island offer a subtle study in what you miss if you fail to look at something closely, and what you miss if you fail to look at the big picture. I was standing in the same place when I took these two pictures. I simply looked up, then down. And I wondered how things might have been different if the same had been done for my son.



There were, of course, palm trees in Florida (pictured: Bunche Beach) and in California (pictured: Venice Beach). I absolutely adore palm trees, not just for their beauty, but also for their spiritual symbolism.



Then there was this tree root at Bon Secours. The gimel reached out at me as I walked through the woods, and I was immediately reminded that there is a similar mark on my left wrist which I first noticed around the age of 7. The symbolism is not lost on me: I looked it up a while ago, and learned that the gimel refers to one who chases after those in need. Indeed, I chased after my son...in so many ways.



I still want to identify the artist(s) who created this piece which was on display at The Lab in Costa Mesa. I am not sure what the artists was commenting on, but needless to say, the sentiments grabbed at my heart. Look closely at the words.



And as with the shells that signified the importance of both looking closely and also looking at the big picture, I stepped back to take a picture of the entire piece and found what I was looking for:

And...scene

Setting: Sekai's hospital room, week one or two, after he removed his feeding tube after stating, "I don't want you guys giving me any nourishment."
Commercial for an online dating service is airing in the background.
Sekai, smirking, of course :"Mom, have you ever thought of going on [unnamed online dating service]."
Me, looking him at him sideways, seeking out his angle:"Um. No. Why would I? What are you trying to say?'
Sekai:"Well, you might want to. Because you're single..."
Me:"Are you making a comment about me being a single mom?" (Unfortunately, I didn't understand that Sekai's comments about me being single and taking care of him were meant as an accolade, that I was taking care of him, doing so much for him as a single person when his foster parents were a married couple and...)
Sekai:"No. Not like that. It's just...then you wouldn't be alone. If you went on there and met someone."
Me:"I'm not alone. I have you."
Sekai:"You should go on there...so you won't be alone."
Sigh.

Why I am blogging

Today I will mail the bulk of the thank you notes to everyone who offered compassion and support when we laid Sekai to rest. It is not over, though, not even a little bit. EVERY day there is something that reminds me of him. In the last week or so, the reminders have been fast and furious. So I blog so that people will know.

A presenter at the conference I was attending mentioned repeatedly how her family supported her efforts. At first, I was ok, I even smiled or laughed like everyone else as she spoke of how her children "helped" by bringing her "coffee", the brown substance of which she could not actually identify. Then I started thinking of my son, and how he would call me "Dr. Mom" or to--differentiate from the myriad of medical professionals who helped or didn't help the body that he hated--"Dr. PhD Mom". But then I found myself counting her references to her children. I heard myself sort of counting down. And then she recounted how they stood up at her graduation when her name was called and I remembered that I had already started--more than a year in advance--working on my argument to have him sit on the floor rather than way up high where people who use wheelchairs usually have to sit, which is fine, as long as the reason that you use a wheelchair in the first place does not also affect your vision, as it does for many people who have cerebral palsy. Then my vision of my ceremony cracked and shards flew everywhere and then I flew out of the room, trying unsuccessfully to hold back my wails as I remembered again that he won't be there for my ceremony. And he would have been so proud. He used to tell people, "My mother is getting her PhD in special education to change things for kids like me." He would also ask me what I planned to do after my PhD, but more on that later. (Because he also asked what I would do after he was gone, and I kept telling him nothing because he wasn't going anywhere, he could stay with me always...more on that later.) Thankfully, there were friends there who knew what was happening, had even watched for it to happen, and they were there to just be there while I let go, then pulled it back in. But there were also people who had no idea why I was suddenly such a mess. So I blog so that people will know, and hopefully understand.

That same day, various spoken word artists opened my broken heart, operated on it, and gave me medicines to take at home. I left out mended it for a reason. Because that's just not possible. The Wryte One started messing with me by lamenting, "I wish I could press pause on life." Exactly. That's what Sekai needed. If we could have paused life, that would have given us the time to unpack all his hurts, shake them loose, sift them, bury some, release others, and just plain light others on fire. But as much as I would do anything, anything, anything for my baby, I couldn't stop the earth from spinning or time from passing. Then Komplex stirred the pot by commanding that we "dream or die," noting that "we the different, we never walk regular" (which actually made me smile because I think Sekai would have liked that comment as a different way to look at his inability to ambulate and would have appreciated different-> peculiar->peculiar people->). And then I thought I heard my son speak from Komplex's mouth: "Since I can still love you from the sky, goodbye." Breath. Take a breath. Am I crying? Ok, good, don't cry. This is good information; more than that, this is fuel, for me, for my walk. And I begin my walk again without fear because, as 13 of Nazareth put it, "How you believe in God scared of creation that live in submission to God's will?" and "...the same letters used to spell scared are used to spell sacred and...you can't be both. Well, technically you could, but it wouldn't be conducive to growth...." Sekai was both. Point and example. I cannot even get into what he says about prophets, at least not yet. But I am uplifted by the reminder that "stability within the motion of life is God's will." Hmm. Am I stable, what with all this crying and breaking? But then I hear in my spirit that the ultimate stability is in not taking my hand back from the Lord, so yes, ok, consider me stable. Words, spoken or written, can broadcast the thoughts of the heart. So I blog so that people will know, and also speak up.

"The Truman Show" has been on cable for the past two days, and the first night, I could not watch it. Truman's life is manufactured, and his whole life is manipulated by the corporation who took legal possession of him for the purpose of creating a show and making money. Truman learns that his life is not really what he thinks it is, that his family and friends are not who he thinks they are, but rather are paid to be in his life. In the end {spoiler alert} he decides to escape the bubble, and there is a scene where he bangs his arms and head against the wall blocking him from the real world, his real life. Sigh. Truman. Sekai. Who else? So I blog so that people will know, and so that people who know will tell me so that I will know.

The henna on my ankle is fading, so I've stopped looking at it. But my memories of him have not faded, nor has the pain of his absence. So I blog so that people will know, and we can all make sure his story does not fade.

"I don't want to grow up..."

"...because I might die." That's what the woman on TLC's What Not to Wear just said. And my spirit screamed at the TV screen, "or you could not grow up and still die. You could die, and not grow up at all." Of course, she has grown up (they just said she is 46 years old), and I'm not really thinking of her dying. That's not the point. The point is... I don't know.

Maybe the point is she made it to 46, and my baby boy didn't make it to 16. I think I may have to turn the channel.

I know. I know. I cannot avoid forever statements that make me want to scream, or cry, or statements that just hurt. But for now, I am doing my very best to do just that very thing. Especially this weekend. Sunday is the 23rd. Two months since I last saw him his body. And on Monday, local children go back to school. A friend included me on a mailing asking whether, if given the choice, I would want to send my child to public schools or homeschool. Um. I would prefer that he simply be alive, and here with me.

But I know, I know. I cannot forever avoid statements that make me deeply, deeply sad. And that's how Sekai felt. Like there was too much that he could not avoid. At least, that's what I think he felt. Sometimes. I think that's why he said he didn't want to grow up. He was worried about what would happen to him if I died. ("My mom is older than she looks", he would say to people who questioned whether I was his sister.) He was worried about having to get a job, about what job he could possibly secure. He was worried about having to move out at age 18. I told him over and over that I fought too long and too hard to get him back in my life, in my home, in my arms for us to even have a conversation about him moving out just yet. I told him he was welcome where I was, wherever I was, always. I told him if he decided to get married, we would figure out the best home for all of us, so they could have their space as a couple...but if he really wanted 13 children, we might have to reconsider the living arrangements. He laughed at that. Then his face fell. Somewhere along the way, he had heard that he would have to leave home at 18. Either "because that's what people do", or, more likely, because that's what happens to children who grow up in foster care. So he didn't want to grow up at all.

Out into the shadow

I returned to work yesterday. As in, during the day. On a week day. When people were there. Lots and lots of people. I tried to avoid people who knew, especially people who had been at the funeral or whom I'd been in regular communication with because maybe they would provide an unexpected touchstone and the bricks would fall out of my carefully constructed wall, and I would, you know, like break down crying in the hallway. I also tried to avoid people who did not know that the son I had loved for 13 of his 15 years had passed away. I mean, really. There is no way to explain this without crumbling a little, or perhaps a lot.

Which is sort of what happened when I was asked, "So, are you have a great summer?" The ground shook a little bit, but I was able to dig my toes through my flip flops and into the Berber carpet to steady myself as I responded something along the lines of, "Um, no, I'm having a horrible summer." In my head, I followed up that statement with something about it being the worst summer ever, and tried to position myself in a way that would allow me to catch the bricks and put them back without being obvious about it. When I pulled myself out of my head, I could see her looking at me with a quizzical expression. Had she seen me applying mortar? I had no words to offer her, but thankfully, someone else who was present interjected, "Her boy passed away." At least I think that's what she said. The floor started shaking again at the phrase, "her boy." I wanted to thank her for recognizing that he is my boy. I wanted to ask her if she understood the fullness of his being my boy, and not *just* a foster child that I had just met months ago when we were matched (again) for adoption. But I didn't. I'm not sure if she saw me crumbling or felt me crumbling, but she quickly redirected the conversation and led me to her office for the business at hand. Phwew. That was close!

But then as we were trying to schedule my work, I heard myself explaining that yeah, planning for mid-October might not work because I'm probably going to shut down for the beginning of October because Sekai's birthday is October 8, so maybe, uhm...and the tears welled up in my eyes. The floor was still, but I was shaking, bricks were falling, and I just knew the tears were next. "Stop!" I told myself. Out loud. She was much kinder to me than I was to myself in that moment, and brought it all to a close by saying quite simply, "so we'll schedule it for the end of October". Ok, yes, let's do that. The meeting came to a close, and I walked out quite happy with where things stood, thinking, hmm, maybe I won't go out of my way to avoid people who understand after all. And then I started sobbing in the stairway...but I pulled it together by the time I got to the bottom of the stairs.

Last night, I read these words on p. 95 of "Eat, Pray, Love" by Elizabeth Gilbert: "But what if by choice or by reluctant necessity, you end up not participating in this comforting cycle of family and continuity?...You'll need to find another purpose...Virginia Woolf wrote, 'Across the broad continent of a woman's life falls the shadow of a sword.' On one side of that sword, she said, there lies convention and tradition and order, where 'all is correct.' But on the other side of that sword...'all is confusion.'" Ms. Gilbert was writing about choosing not to have children, and though I have not read Ms. Woolf's work that Gilbert references, I imagine Woolf was also speaking of that choice. I made the choice to be a parent, though. I made the choice to have a family. This, this here, this standing in the shadow? This was not my choice.

Return Assured

My packet came yesterday. If and when the need should arise, I am a member of Return Assured, so that if I am more than 100 miles from my legal residency at the time of my passing, they will assure that my body is returned to Ft. Lincoln Cemetery so that I may wait in rest with my son. I didn't realize that it is based on your legal residence, but rather understood that they would assure my body's return to Ft. Lincoln. Period. Hmm. So, I guess I will have to figure that out. But the point is, just in case everyone doesn't already know, I am to be laid to rest beside my sweet boy, when the time comes.

I know. Nobody wants to have to think about that kind of thing. Like I didn't want to have to call DDA and let them know that Sekai could not update his DDA waiting list information, nor is it necessary to keep him on the list at this point. That sounds all legal and technical, but really what I said, in between pushing down tears, was that he passed away, and um, can you please stop sending him mail. The woman quickly transferred me to someone else.

Where there is no vision, the people perish

"Where there is no vision, the people perish..." (Proverbs 29:18, KJV)

I'm familiar with this scripture, having studied it in my church years ago during a time of major transition within our church. Today, though, a friend (and clearly a spiritual sister sent by the Lord at the right time) ended a conversation in which we were talking about my son and her grandmother and structural sin by stating, "and people are perishing". I guess I understood this scripture to mean that it was the responsibility of the elders/leaders/heads/supervisors/directors to have a vision, or else they might not survive, they might not make it the whole way. (Think Moses not getting to go the Promised Land.) Today, though, my friend's response caught me off guard and clarified for me that though those in a position of power have the responsibility to maintain a vision, the danger is that the ones who usually suffer are those who are the most dependent on those who are in a position of power, those who are most vulnerable.

And, as I learned in another conversation today, way too often power protects power (either itself, or other like entities). Who, then, is protecting the vulnerable, especially when those in positions of power who are charged with protecting the vulnerable decline to do so?

Please take a look at the new links that I posted in the links columns today from Children's Rights, a watchdog organization that advocates on behalf of abused and neglected children throughout the U.S.

"You hurt my feelings"

Earlier today, I spoke with a friend who is raising up incredibly strong, emotionally secure children. Her 3-year-old boy can label his emotions and self-advocate. Recently, after his baby sister took his toy away, he told her, "You are not being nice, and I feel angry about that." On one occasion when he demonstrated inappropriate behavior at a particularly challenging time, my friend responded in a way that she would not have normally. He respectfully told her that she had hurt his feelings. She thought about it, and apologized to him, even explained why she had reacted that way, but all the while taking responsibility for her behavior and agreeing that it was not the most appropriate response.

As I listened to her, I started to cry a little bit. Wow! How valuable and loved this child must feel that he can take a risk and share his inner thoughts without fear of repercussion. He knows his mother loves him and takes good care of him, and that this is unconditional, not at all contingent on his behavior. In fact, even though her reaction was in response to his inappropriate behavior, and he knew he was wrong, he did not speak back to her about her words to him, or indicate that he was not to blame. Rather, he just wanted, needed her to know that he did not feel good about the way that it was said, and he was secure enough in her love for him that he knew he could say so. And he was secure enough in his love for himself to be able to say, in effect, please do not hurt me. And he knew he would be heard! Imagine. Imagine the love. The security. The feeling of being valued and valuable. Needless to say, I effervesced about how she was building such an incredible foundation for his emotional health, self-esteem, self-advocacy. And I could not help but muse that if only Sekai had had this foundation...

We have to help ALL children to be this strong. We have to shed traditions that tell us that raising children (especially boys) who can talk about their feelings is wrong. We have to quiet our egos and be willing to listen to what children tell us about how they feel, even when they are talking to us about us.

Lyrically speaking

As I was pulling together songs and pictures for Sekai's remembrance DVD, I was struck by some of the lyrics to some of his favorite songs. I love music, and so did he. Some of the songs he sang were obviously songs about us, and I had to be careful to not let him listen too much, even if they sounded like happy or inspiring songs from a cursory listen.

Like "Life is a Highway" by Tom Cochrane, which Rascal Flatts introduced to the younger generations when they covered it for the soundtrack of the movie"Cars." The line "there was a distance between you and I" was my first tip off. Then I learned the rest of that line is "a misunderstanding once, but now we look it in the eye." Reading through the lyrics now, I see even more: "There's one day here and the next day gone," "I love you now like I loved you then," "The road's so rough this I know, I'll be there when the light comes in, Just tell 'em we're survivors."

Ok, so reading, decoding, these lyrics is harder than I thought, especially today, one month after laying him to rest. So let me just post what I came on here to post.

Demi Lovato was on The View this morning, and as she walked out, they played "This is me". If you have no idea who she is, then you have likely been spared all things Camp Rock. Sekai loved Camp Rock. Well, he loved musicals, but Camp Rock was one of his favorites. I thought it was just because "Demi is pretty" (code for "hot", though he wouldn't admit to it to me, but would tell others, lol), but then I watched the movie with him and learned that it is actually quite good. The soundtrack, though, which is also quite good, is what tuned me in to some of what my sweet boy was looping over and over in his head, since some of the lyrics came directly from his life (my life, our life) and not just from the movie. So when I heard Demi was going to be on The View, I planned to miss that part, but ended up walking back into the room just as she was coming on to the stage, and I found myself singing along: "This is real, this is me, I'm exactly where I'm supposed to be now."

Sekai, I know you are where you are supposed to be now (in heaven with Jesus, blessed be the Lord), but one month after laying you down, "You're the voice I hear inside my head, the reason that I'm singing, I need to find you, I gotta find you. You're the missing piece of me, the song inside of me, I need to find you, I gotta find you." It took 11 years, but I did find you, and brought you back home. But now I cannot.

Some good days, some bad days, some really sad days

Today turned out to be a really sad day, but I wasn't entirely sure why I felt so sad, so bad, aside from the obvious of course. Maybe it was making myself stay seated after hearing the exclamation, "kill me please" from someone fussing at a laptop. Maybe it was when I almost answered the question, "how is your son?" by saying "he died", but then I realized my friend knew that, so she wasn't talking to me. Maybe it was a conversation about hot peppers->wasabi->"Darius Goes West"->disability and race and power. Maybe it was an email about another boy struggling with attachment disorder and his loving mother struggling to help him. Maybe it was the lady at Walmart threatening her fussy little boy while I fought the urge to grab him and run, or simply ask her to just let me love him.

But then it occurred to me. No, it punched me in the chest. Today is 7/22. Tomorrow, if it comes, will be 7/23. One month since I saw him...well, saw his body, in his suit and tie and glasses and Terps cap, holding his Mach 5 and Spiderman, surrounded by Happy Meal toys and HSM3 trading cards. Today is also a Wednesday. Six weeks since I held him. And begged him to hang on, to please stay with me. And told him over and over how I loved him, how we loved him, how he was so dearly, dearly loved and wanted and we would figure it out just please give us more time...

Youth with Disabilities in the Foster Care System: Barriers to Success and Proposed Policy Solutions

I'm sure Sekai would have something to say about this, too. I could not even read the report yet. Just reading the abstract on Ebsco made my heart beat a little erratically and my eyes begin to well up. Abstract:

The article reports on the call of the U.S. National Council on Disability for foster care staff to undergo cross-training for special education. [italics added] The council has argued in a report that students with disabilities and children in foster care face many of the same challenges, like both have low rates of graduation from high school and admission to college.

http://www.ncd.gov/newsroom/publications/2008/FosterCareSystem_Report.html

And the winner is not...

I'm sitting here watching another reality competition show with my mother when I turned to her and said, "I think Sekai would have really liked this show." She agreed. After all, he liked to watch people dance, and he was a big fan of "Biggest Loser". Besides, I added, "he would have really gotten a kick out of asking if he could watch 'Dance Your @$$ Off'!"

"D.C. Adoptions Drop Sharply, Causing Dismay: City Agency Is Not Doing Enough For Foster Children, Critics Say"

I'm sure Sekai would have had something to say about this! http://www.washingtonpost.com/wp-dyn/content/article/2009/07/19/AR2009071901430.html

Existential, phenomenological, or maybe just sad

I keep having these moments. Existential moments where I replay the conversations that Sekai and I had about life, lives, living. Phenomenological moments where I question the experiences that he had, the experiences that we had, the experiences that I am having now, and the meaning behind them all.

Sekai would often ask what I had done when he was away, would ask what I was going to do when he went school and ask what I had done during the day when he got back home, would ask what I was going to do in the future. (Sometimes he would ask what I was going to do when he was gone, but I won't speak of that right now.) There were times when he referred to "our life". I often felt the need to explain that I have a life in my body and he has(d) a life in his body, life as in having breath, essence, being alive; and then we each have a life that we are living, like the day-to-day this is my life stuff; and then there is the life that we build together as a family, friends, or just people who choose to walk through life together. And that's where it would get fuzzy, because we did choose to go through life (life, the bigger life, the collective essences of all together) together, but that choice was taken from us (not going there right now). And he would go back to the top, and talk about his life when he was gone from me and I was gone from him and he had breath, but not a life, and was not sharing a life with anyone, really. And we would cry. Or I would, because at some point he stopped crying (not going there right now).

The existentialism--what is existence? What is a life? Sekai has passed on, his spirit is in heaven, his body in the ground, but surely he still exists. Every morning when I awaken, I remember him again, and remember again that he is dead. I hate to say that. But that's how it comes to my head every morning, and periodically throughout the day: OK, I'm awake. Do I have to get up right now? What's on my schedule today? What's going on in my life? Oh yeah/snap/****, my son is dead. My son is dead. What does that mean? He lives on in your memories or in your heart or in your work, people say. What does that mean? So he still has existence? He still has essence?

The phenomenological--what is the phenomenon of having a child taken? I wrote a paper on that a while ago. Considering revising and publishing. (Not going there in this blog right now.) Of being taken? What is the phenomenon of looking for, fighting for a child? Of wondering if you are being looked for, fought for? What is the phenomenon of reuniting with a child? Of being reunited with a parent? What is the phenomenon of losing a child? Ultimately losing? No fighting left to do. Nothing to do to bring him back. What is the phenomenon of...this!? What is the meaning? And of course, to even think of the experience, to think of the essence of what is happening, who is happening, to create a memory of it, to create meaning is to risk changing elements of the experience.

I am planning some travels over the next few weeks to visit some old friends, some of whom I have not seen in 18 years. Through Facebook, I have been able to reconnect with people who I have not seen or heard from as far back as the third grade. Talk about existential. People whom I saw practically every single day for a period of time, and then not at all for an even greater period of time. And now we communicate again, in some form. But they still existed all those years in between. Anyone who has added a friend on FB has done the quick search of the info page or flipped through pictures. Hmmm, what did this person do with their life since we were last in touch? That's the question that plagued Sekai. He wanted to know what I was doing when we could not get to each other, but he never had a good answer. And then when he was back, he was aware of and constantly reminded not just what I had been doing, but what everyone else had been doing to. He had a new godsister. There was an actual person created since the last time he had seen his family. These realities hurt him to his very deepest existence. I had described him to a therapist as the love child of Nell and Rip Van Winkle. If only he had been a loved child through it all, known that I was loving him even though I couldn't reach him. (NOT going there right now.)

Anyway, so I'm going to be traveling. Traveling always brings out the existentialism in me. You're here, they're there. You get in a car or on a plane. Hours pass. (The passing of time is a topic for another post.) Then you and they are together. You're in a completely different space/place, and sometimes time. The people you left behind are still there. When you go back, the people in the place you were visiting will still be there, and you catch back up to the others at home, go back to your life.

I fancy myself a philosopher, some days. Existentialist. Phenomenologist. (But very, very much a loving and loved child of God, daughter of the King, the Christ. Don't mistake me.) I think Sekai was truly a philosopher. He stayed up many nights just thinking. About his existence. My existence. Our existence together. The existence of all. His experience. My experience. Our experience together and apart and together. The experience of others like him. Being. Or not.

His pragmatics disability sometimes got in the way of his expression. Like many brilliant minds, he had what we refer to as severe learning disabilities. But his words, his thoughts, were deep, and we were beginning to establish a communication style where at times, we could shed the fears, the anxieties, the pain, and he would speak from his being and make himself known, make his perspective known. And one of the things that he would say was, "sometimes, I wish I did not exist." He would say it just like that. At first, he was saying, "sometimes I feel as if I do not exist." Very mystical. Then, after a particular incident, it became clear that it was not mysticism per se, but a twist of pragmatics. We did the language game, or un-game, and then he made it clear. "Sometimes, I feel as if I should not exist. I don't want to exist." And sometimes, "I wish I was never born". To not want to exist, to not want to be anymore, versus to not want to be born, to never have existed at all. And of course I would tell him how much I loved him, how much I thrilled at his having been born so that I could meet him and love him, and how much I wanted him to continue to exist, to be, to live, to have a life with me.

I could go on. And I will. I will go on in my life, Lord willing, but not in this post, not right now.

And the winner is...

I'm sitting here watching part 1 of the season finale of Fashion Show, and I have to laugh. My mother is alternately grimacing, sighing, covering her mouth...much as Sekai used to do when watching Jeopardy (his favorite game show), Top Chef (he liked competition reality shows, and liked to suggest changes to the recipes on this show), America's Next Top Model (he was 15 years old, and very teen boy, what can I say) or any number of game shows and competition reality shows. Last ANTM season, I perched at the foot of his bed as we watched the finale. Mom and I were rooting for Anneleigh, but Sekai was adamant that McKee would win. When Annaleigh flubbed her lines, my boy looked at me like the cat who had swallowed the canary. He had been smack-talking all night, and even had me text my mom to deliver his one-liners. With Anneleigh unable to get it together on screen, and Sekai flashing me the look, I had to give in. "Go ahead," I sighed. He raised up in bed, pointed his finger, and oh so loudly proclaimed, "your girl is going DOWN!" He then insisted that I text this taunt to my mom. I did. And Anneleigh did. He almost always called the winners on the reality competition shows. On game shows, however, not so much. The last time I watched Jeopardy with him, I watched him grimacing, sighing, covering his mouth...at one point, I actually thought something was wrong with him. When he replied that he was anticipating the announcement of the winner, I gently held his hand, leaned in lovingly, and responded, "Dude, they aren't sharing their money with you!" We both laughed. Just as my mom and I did when I just told her the same thing. Funny, to think of how he carried so many family characteristics.

At the corner of Matthew and Phillip

I have not been able to go back to the cemtery...yet. But I think about it a lot.
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Salvation

Sekai asked, Is God dead? No. He asked, Is Jesus dead? He's alive with, resurrection power, and he lives in your heart. He asked, does the devil knows that he loses? He does; that's why he fights so hard. He asked, when will the earth end? I don't know. He lamented, I'm going to hell because I'm so bad. I comforted, You're not bad; you're hurt. And besides, you know Jesus, He knows you, and you've asked to be saved. He smiled and said, I get to go to heaven.

Missed appointment

I am not sure which is worse: that the clinic sent me a text message--a text message!--or that they were calling about a missed appointment.

"I am returning a call. The caller did not leave a name. I did not make any appointments there, did not call there for him"
"Is the child in foster care?"
"The child was." The child. I don't know. Those words just caught me off guard. And so I repeated them.
"Was, or is?"
"The child (repeating the phrase again) was...is...(no, don't say what he is, can't say it)...has....unfortunately passed on."
"Oh. We didn't know. What is his or her name?" Wow. You really don't know anything about him at all, huh? So I give her the name. She puts me on hold. Someone comes to the line again, whether the same woman or a different woman I am neither sure nor concerned.

She asks his name again. (His legal name. Not his family name. He was not adopted yet, and so we still had to use the legal name. This is how he identified them: legal name, family name.) I say it again, the words thick and heavy in my mouth, the sour sting not tasted until the aftertaste hit later.

She pauses. It is clear to me now that she is not asking because she does not know, but because she is double-checking that she is in the correct file before making this new, this last notation.

"I am sorry," she begins. Her words as heavy, as heavily laden sounding to me as saying his name had felt. "He was in the computer for an appointment on July 2. It came up as a missed appointment. We were calling because of the missed appointment. We didn't know. I am sorry..."

I ask her to please make sure the clinic does not call, or text--text!--me again. She agrees. And again she apologizes, she didn't know.

I feel badly for her, I really do. But mostly I just feel bad because she has made me have to explain that which I try repeatedly to forget, to not believe, to will to be different that which I know I need to process, to cope with, to accept.

Chicken nuggets, with a side of sarcasm

(I drafted this a few weeks ago...)

Sekai began mastering the art of sarcasm at the age of two. He had many doctor's appointments even then, and so we were in the car quite a bit after school, and would stop at this or that drive through for (wait...for...it) chicken nuggets.
One evening, he called out from the back seat, "Wendy's!"
Aw, note to self, I need to tell your teacher to change your IFSP, that you do indeed recognize environmental print.
"Do you want to stop for chicken nuggets?"
"No."
Check rear view mirror. Note blank expression. Ponder for a moment.
"Wait...are you being sarcastic?"
Note the *smile*.
Aw, note to self, you have mastered sarcasm, and I need to mention this to your teacher as an indication of your fabulous intellect, and your language ability. I should also remind her that language is not the same as speech.
So needless to say, we stopped for chicken nuggets. When I recounted the story to a friend, he responded without missing a beat, "and I wonder where he got that from?" I actually stopped and thought about it, trying to craft an answer, then it hit me. 1) We are not the only sarcastic people.
2) My son is indeed mine, and so much like me!