love thursday confession

So.
As stated before, I am tired.
And the problem with being tired and blogging, is that it is hard. For me. Because before NaBloPoMo, I didn't write very much when so freaking tired. But I made this contractual obligation with myself, you see. And I was determined not to break it. Even if I type gibberish, which, upon looking back over the month of posts, apparently I felt at liberty to do. And again, here.
But the real crux (nice word, that) of the problem with being tired and blogging, is that I don't usually feel compelled to write and share something every single day. Some do.
Some things I write about are easy. Cupcakes are easy. Other things that I write about, I think about for a day or two. Or more. Like many who blog, I assume.
But the following 'Love Thursday' words? I wish I had more time to form them, to tell you more from my heart what I mean. But I am tired. And I am a slave to the contractual obligation to self.
Today I was working with a woman I do not know very well, but I do admire and respect her; she has years of working with babies and mamas, toddlers and parents. Between the classes, we were chatting, and it came to pass that I mentioned Bubbles was not my second child, but I had had another son. The statistics were quick to follow of course: Elijah, 13mos 11days, two and a half years ago, myriad of undiagnosable delays, undiagnosed growth disorder, mystery baby, very sweet, very interactive, died from....well, bronchitis. And tracheomalacia (if they're still listening). Yes, it is hard. Yes, our whole family still suffers. Umm....yes, and...umm...this little guy on my lap, Bubbles, see him? Well, yes, he is just what our family needed.
And her response was shocked and sweet and kindly and maternal and then she said,
"It must be easier though, now?"
"Easier?" I glanced at Bubbles. And at her. (?)
"Well, easier not to have to deal with all umm...that. all those...issues...I guess. Easier that way."
I said, "Well, it is my family's history. It just is. And the healing is a lifelong process."
I don't think I answered her question, but you know what? It was a stupid question. I have come to learn (and someday perhaps will accept) that people often say stupid things. Nice people, too. Stupid, stupid, stupid-ass things.
sigh.
So I got over myself and was fine for the rest of the presentation. (Until later in the day when I was stuck on an entrance ramp with my car alarm going off every time I touched anything but that is really another story!)
But let me share something with you - to any of you who are left reading after the month of posting whether I had something to say or not - My son's death was not relief for me in any way. I did not feel released from his needs - I felt lost and without purpose for years.
His death was not and has not ever been anything grateful in our family. No, I don't sit around thinking, 'thank goodness we don't have to deal with a wheelchair!' Sometimes I sit around calculating how old he would be (3.8yrs, can you believe it?).
I have never, ever felt that my life was better because of his death. Honestly, I did worry often about who would take care of him if we died before he did. The thought would make me worried, scared, sad....and then angry at the world for shitting on him for being different.
But never did I feel that his death was a blessing. Some think that way. I do not.
If anything, and let me be perfectly, crystal clear about this, when you are the parent of a child who has more needs, different needs, special needs, quite often the response is to love that child just a little bit more than your other children (whom you would never, ever compare in the same realm). Because he needs you more. You bet he does. What with the world shitting on him and all. So don't be fooled into believing that some child's death was a 'blessing' or 'relief' for the family, just because he was living a different kind of life than yours.

LOVE THURSDAY.

Supergirl, 2 yrs, Elijah, 8 mos.
Love.

NaBloPoPo'Me

I am tired.
My baby 13 month old DOES. NOT. SLEEP.
And neither do I, and I am tred.
I am tire.
i am tird.
i m tried.
i am torrid.
i am tired.
I
AM
TIRED.

So there.
There is my po, NaBloMo.

Only one more day til the gibberish may cease.

Grudge Tuesday: 69 days

Birthday Present Watch:Day 69
Necklace or noose?

Bubbles is a Friend of Leelo's

Bubbles is a friend of Leelo's.
He likes to carry around the 'O-balloflove' and some socks.

Enjoys: baths, a good joke, sharing a vanilla milkshake, sandy blankets, eating cats.
Turn ons: breasts, oatmeal, outside, noise.
Turn offs: denial of breasts, oatmeal, outside, noise.
Most reliable personality trait: fickleness JOY
Most likely to: Snuddle (think snuggle+cuddle)

Toy Stories

When I was nine years old, I got a barbie glamour head for Christmas. After begging for a full year,my parents Santa finally caved and gave me the hideous thing, no doubt hoping that I would get the 'I want to be a make up artist and a hairdresser' itch out of me by glamourizing a plastic head to my heart's content.
Anyway, by the afternoon, my across-the-street neighbor, Annie Sanders wanted to come check out my booty and I was all too happy to show it off. While I was busy in the living room playing with Suntan TuesdayTaylor, Annie Sanders, was off entertaining herself with 'the head' at the kitchen table - the only place make-up would be allowed in this house, young lady.
Except that when I wandered into the breakfast room to find her, what I found was my beloved head, covered in warpaint-like make-up...ummm....gulp...that was fine, she was certainly washable, right? Except, and here is where it got ugly, the little tray of creamy make-ups, the blue, the pink, the purple and even the black, all of the make-up that I would surely be allowed to own - ever - in my childhood (I was correct) were all gone. Gone. Gouged and scraped from their tiny tray until barely a trace of each color remained.
I remember that I first asked her why she did that? I mean sure, she was only eight, capable of doing far more stupid things than a nine year old like me, but why? Why, Annie, why? I thought you knew how I excited I was to get this. And play makeup with you! And sneak makeup on each other instead of the head! But you ruined that. Because you are STUPID and DUMB and you ARE TOTALLY SMELLY AND I HATE YOU. GO HOME NOW!
Well, yeah, Annie Sanders did go straight home, I went straight to my room, and I never saw that head again. The present that never was, boohoo. My stylist career was over before it even had a chance to bloom.

My friend, The Boss of Seattle, has a great Christmas toy story too...
She got a Baby Alive. (That lucky bitch, because my mom would not get it for me after the urban legend(?) of the Baby Alive being found with maggots inside of her.)
If I have to even remind you, Baby Alive was the doll that ate the sugary gel you fixed for her and then pooped it out.
(Ohgod, I think I am a bit in shock because when I just searched for that doll link, I discovered that Baby Alive has been revived. From the dead. Scary.)
Anyway, The Boss got her Baby Alive and played with it so much that the batteries were dead by New Years.
The Boss came home from school her first day back and found that her mom had put Baby Alive in a shoe box. She questioned her mom, who looked at The Boss (who was then called Julie) and sang her a melodic little song:

Baby Dead, cold and blue
She can't eat and she can't poo

And, as The Boss still indignantly declares, "She thought it was funny!"
Well, she has every right to be indignant. But I have to admit, just typing that little song made me snort out loud. I am a bit sick.

Do you have a toy story?

In which I vow to become more productive

I had the pleasure today of having a playground meeting of mommies. Who are bloggers. Which was sort of planned and sort of spontaneous. CRAZY!
My dear friend (known as OBfriend on this blog) who I encouraged to start her own blog and I met at a great park. And these other moms, who blog, who I wanted to meet, were going to the same park. But it wasn't planned, really. It was just sort of mentioned. Then it happened.
I am tired, and I am overwhelmed by the prolific amounts of actual real things that crafty people can create. And I mean that in a good way, as in 'in awe'. I am lucky that I have friends that quilt and sew, because my children have keepsakes that I could not possibly create. I have inherited the same gene that cruelly prevented my sister and myself from being allowed to enroll in the first grade brownie troop: that inability to sew. My mom told my sister that she could not join the brownies, because she (my mom) refused to sew and therefore could not help her with that badge (or, the sewing on of badges). And that she could join the girl scouts when she (my sister) was old enough to sew her own darn badges, etc. And the same stood for me, five years later. End. Of. Discussion.
Anyway, I got to meet the lovely Michelle and her very fast four year old and her six month old toddler. (oooh - Michelle - you really should meet Amanda! She also has a six month old toddler!)
Also, the beautifully, radiantly, 36 week pregnant Sara, as well as her pig-tailed preschooler, Kaia. And another mama, and I am not sure if she blogs or if I can use her name. She was also quite nice.
By the way...my son dumped and played with an entire box of most certainly overpriced organic vegetable crackers. We do not normally endorse this sort of behavior in our homes. Who owned the crackers? I totally owe you some beer. Or crackers.
Soooo, meeting these lovely women and feeling shadowed in their creative presence was....well, it was super! They did not judge me (did they?), and it is my hope that I can befriend these lovely women and their children (or bribe them with cupcakes if I need to) and they will teach me their ways.
Okay, not so much the sewing ways, but the knitting ways.
Did you know that Sara told me that she will teach me how to dye pre-hemmed playsilks (there will be no sewing involved!) with koolaid in a microwave? Yes, these women are smart.
Okay, maybe they will just agree to meet me at Kelly's Bakery and be my friend.
And then with the knitting.
Anyone out there wanna teach me guitar?

Supergirl's Story: A Work of Nonfiction

Supergirl has a journal - in her kindergarten, when they bring home a writing 'prompt', the teacher asks that the parents write the words for the children, so they can focus on the flow of sentences and descriptive words; lock into the creativity of writing at an early age, which I love. LOVE.
Her first entry came home with this note from the teacher:

Supergirl;
This is a very descriptive story.
I can really hear your fear.
Your pictures look like real black widows.
Great job!

Supergirl's story:

I am scared of black widows.
They can bite you very hard.
They can climb all over you and bite you if they feel like being fierce.
Their poison can kill you if you are small and I am small.
They are creepy.

Simple Gifts

In which I declare for whom and what I am thankful (the short list):

My daughter, the super.
My son, the one who is alive.
My son, the one who is dead.
The 406 days that I had with Elijah.
The 406 gifts that Elijah gave me.
I am still alive to raise my children.
The health of my family.
My mother.
Memories of my father.
Dh.
My family, in blood and in law.
My friends.
Oceana Blue Banana - the best of all the great neurotic cats.
Warmth.
Breasts, and their generous nutritional miracle.
Life.

Quiet

When the baby woke up from his nap (on the big bed) it was eerily quiet.
I was listening for him to wake up any minute (never, ever does he sleep longer than 60 minutes) and heard a bit of rustling. When I came upstairs, I found him with a small collection of bedside water bottles and a New Yorker magazine.


Seriously checking out some gallery opening in SoHo, no doubt. Of NUDES!
The boy is not even 13 months old.
Okay, in his defense, the page was opened to one of those stiff card-insert ads, which is what the cartoons are. The cartoons which are on the opposite page from the one over which my son is drooling.

Grudge Tuesday

Disclaimer: I realized that a good many of my grudges are set in the PESD (Post Elijah Stress Disorder) time frame. So, as I mentioned before, even the memory that has created these grudges has clearly been influenced by my stark view of life at that point.
Okay, now that that's out of the way.

After Elijah was born, my friends really thinned out. It is probably fair to say this was for many reasons. Like, for one, nobody in their intellectual or empathic mind could possibly understand, unless they were living it, what it was like to be parenting a child who had special needs - not dealing with the child so much as the diagnosis...or lack thereof...and the endless parade of doctors...and the membership of this new parenting club you never voluntarily joined. And that can be quite isolating in itself. Then there is just the basic reality of the fact that you have no more time to socialize, what with all the OT and PT and EI appointments... And then there are the other ones. The ones who just don't call - well, they didn't know what to say...as they tell you this apologetically when they finally do call or run into you at the farmers market.

After Elijah died, my friends really thinned out. I guess it would be fair to say that this was also for many reasons, but-
hey - fuck that. Fuck FAIR. My child died. So fuck off with the fair.
Oh. Sorry - got carried away.

Anyway, rest assured, the good friends were there for me, supporting me and calling me every day to make sure I was still breathing. Which is why I am still alive. Really. But today is not their day. (sorry, good ones.)

I have a friend; a friend I still love, a dear soulmate-at-one-point-in-your-life type of friend, and I am sad for the great distance between us. I mean that in all ways possible.
About four months after Elijah died, I heard from this friend. I'll call her AJ.
I had been back from our fleeing-to-maui trip just about long enough for me to have run into every single person I knew in town who asked me where my baby was. And long enough for Supergirl to have begun preschool, where again I dreaded each well-intentioned platitude that was stuttered in my direction. But handled with downward cast eyes and inaudible mutterings grace, in most cases, I would like to believe.
But once home, oh did these platitudes make me seethe. What stupidity! You would not even believe what people say to a bereaved mother. Or maybe you would because I now realize that people only say these things because they are parroting what they think is appropriate to say in the awful situation (which means that death is handled very poorly in our culture, in my opinion), and do so without thinking a whit about it.
But I would spend my time coming up with nasty little comebacks in my head for each of the most abused platitudes, some to be used, but most were not.
For instance, the 'He's in god's arms now' used to set me off on a 'what about MY arms? what about MY EMPTY ARMS' tyrade. And the whole 'God never gives you more than you can handle' - well, 'How the hell do YOU know what I can handle? Did you see me on the edge of the cliff last Tuesday?'
And you wouldn't even believe the crap I endured (involving 'better places' and 'angels') from FAMILY. Well-intentioned, but really. 'Better place'?? 'FOR THE BEST'?? Just because he was 'DIFFERENT'???
Don't get me started. That's another Tuesday - there are many to come.
ANYWAY, this friend, Oh yeah -AJ- called me. Months later. Which is fine. She was a good friend - it would be okay and we would pick up where we left off - just like always, right?
We were talking for a few minutes before I lapsed into my 'can I just tell you what is SO LAME about people' shpiel. A theme that had been batted back and forth between us and repeated for years (nearly decades), but now taking the 'can I tell you what crap I hear about my son's death' twist. A conversation that can never really be anticipated in any relationship, you know? I went on for a while...and a while longer....and longer...and there was very little response on the other end. I felt awkward. I felt lost. Umm..AJ? Don't you think this is crazy? Weird, huh? Can you believe that?
Finally, she responded. Maybe it was a fair response. Maybe I really was going off.
She said, "Well, I just don't really know what to say to you. I mean, you are going off about how stupid things are said to you all the time by other people. And I just don't want to say something stupid. Something that you'll tell someone else is stupid."
I was really surprised.
I tried to come up with a way to tell her that I wasn't talking about my friends, I was talking about other random people. And acquaintances. Why would I talk to my friend about dissing my friend? Or some fumbling thing like that.
But the conversation ended soon after that. I couldn't say anything without her worrying about how I might take her response, so it wasn't really a conversation then.

Ironically, this is a person who demands a very high standard of political-correctness in the people that surround her and work with her.
I haven't really made sense of it all. It just bothered me.