Friday, July 31, 2009

"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.

Thursday, July 23, 2009

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.

Wednesday, July 22, 2009

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...

Tuesday, July 21, 2009

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

Monday, July 20, 2009

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.

Thursday, July 16, 2009

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.

Tuesday, July 14, 2009

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!

A meditation on birthdays, with respect to Sekai

So, I almost skipped my birthday this year. I'm 36, which is a blessing, since I've learned all too well that not everybody makes it that far. But it just seemed wrong to celebrate another year of life when my sweet potato no longer has his and I no longer have him. Plus birthdays upset him. Or at least they did when he came back. Turns out his birthday wasn't really celebrated, so the idea of someone else's birthday was a reminder of something else he had missed, something else that hurt.

Growing up, I always had a birthday party. Always. It was my special day. A day when my mother, my family, my friends took time to celebrate me. Perhaps you had the same experience.

Here's something that just occurred to me, though. Sekai used to say, when the depression hit especially hard, or the memories came fast and furious, that he felt like he shouldn't exist, or that he wished he had never been born.

Celebrating a birthday, acknowledging someone's birthday is like saying, hey, I'm glad you were born. I'm sorry that my boy didn't have that growing up, except on his third and fifteenth birthdays (and in little parties at school). I am grateful that I have had that every year of my life.

Birthday or no birthday, take a moment and let someone know that you are glad they were born. Just a thought.