On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Monday, August 8, 2011

If only chemo could cure this

If there were words in the English dictionary that could express how tired I am, I'd use them. Me, the walking thesaurus, out of appropriate vocabulary words to fit the intent. Sometimes, saying nothing is saying everything.

She won't even have been home two months this time around which included one crisis stabilization. Between the IFI therapy, AB's therapies, the doctor appointments for both of them, the CBAY meetings, the school meeting, the phone calls, the trips to the pharmacy and more, the 78 days of summer vacation are a blur. Ironically, when I was a child I couldn't wait for summer vacation. Now as an adult, I dread it (though I appreciate the fact that this is the sentiment of most parents, special needs children notwithstanding.)

Felt like 78 days of pain, torture and sleepless nights. Zombie apocalypse? Just lock two parents up with two challenged kids for summer and voila. You'll have spontaneously generated two zombies out of thin air, like bacteria in a petri dish.

With ennui and nostalgia, I sent off WG and AB for the first day of school this morning. October marks two years since I resigned my career as an educator but truth be told, I've taught more in the last two years than I taught in the 13 years I was in a classroom. Honorary Psychology Ph.D. anyone? I don't really care which university awards the diploma, I just want it, hanging on my kitchen wall which doubles as our family office for all things therapeutic. Maybe from a university in Hawaii? That way I'll at least appear cool. No one needs to know for certain that my rotund gluteus maximus has never graced the waxed fiberglass of a surf board. Hang ten? Shoot, I do that every day only by my fingernails off the edge of a cliff. Regrettably, there's no bodysuits and salt spray involved but thankfully, The Dad isn't hairy like The Hoff. *shudders*


Yesterday, we told Sissy about her return to the hospital on Tuesday, that she would not attend the first day of school here because there was no point. Actually, we said, "We'd be a mean mom and dad to send you to school for only one day." This because she was irritated with us for not letting her attend. Her justification for going anyway was that she had me paint her nails with her new nail polish and she was prepared to wear her new body spray.

*crickets chirping*

She was upset this time, unlike last time when she was giddy and excited, the happiest I'd seen her in months. But it didn't last long. Unfortunately, it's very hard to tell when her tears are genuine or if they are contrived responses for what she perceives as "appropriate." That is to say, one thing we've learned this summer with the new IFI team is that Sissy isn't necessarily manipulating, rather she is parroting what she has learned as correct social behavior. In other words, one would expect to be upset about a psychiatric placement so one might cry. This thought goes through her mind and so by rote, she produces that affect. How do we know it's not genuine then? It shuts off too easily, like a switch. No one that is genuinely grieved can switch on and off. Does it mean she's manipulating? It depends on the circumstance. So at what point to we call this RAD-like behavior a horse of a different color, namely, dissociation, psychoses, schizoid affective, etc? Only time and the passing of puberty will tell.

Thus becomes our final conclusion to this bizarre tale our family is living. Sissy's future looks bleaker, not better. She's not reached bottom yet, I'm not sure her bottom won't end her life (or ours). Although that's morbid thinking, it serves no one to ignore the potential for loss. It would be like playing the lottery always expecting to win big as opposed to assuming you'll lose and then being pleasantly surprised when you win enough to buy a hotdog and a drink at the convenience store you bought your winning ticket at. Last night, as the last waking mental thought faded from my mind before I drifted off, it was of Sissy, whole, healthy, safe, owning all the potential of a neurotypical eleven year old young lady and then I reminded myself that hope and dreams are wasted on the young. The present day Sissy may very well be the best Sissy we ever have. The healing and wholeness of body, mind and spirit, is up to her.

I was sad this time to tell her about her placement, a new emotion for me because in the past, placement has been directly after days, weeks or months of intense behaviors, rages, irrationality and psychoses. I've been emotionally wrecked and angry. This time I'm just exhausted - can't think straight, dizzy standing up, wait, what did you say again? I didn't realize you were talking to me, jumble my words and forget nouns, can't hear because my ears are ringing so badly - exhausted. So when she cried, either by rote or true emotion, I did feel sorry. For a brief moment I allowed myself to imagine maybe this time, maybe it's genuine, maybe she's finally turning a corner toward healing.

Then after supper she off-handedly questioned me. "Mom, what happens if I have to make a stinky in the middle of the night tonight?"

I looked at her strangely because it was an odd question and then said, "Has that been an issue since you've been home?"

"no."

"Then why would it suddenly be an issue today?"

"i don't know."

Except jokes on us. She dozed off for about an hour after bedtime and then was awake, tossing, turning, bumping around in her bed until 2:30 a.m. when she came out of her room and announced to The Dad who had fallen asleep in the recliner, "I have to make a stinky, it's an emergency!"

It's funny how that works, isn't it? Except RAD moms the world over know what it means, it means your child is NOT getting better, is NOT pursuing healing, will ALWAYS struggle. Always.

And as I've typed this entire blog, Sissy has paced and interrupted, whined, questioned inane questions, pestered, harassed and refused to accept my neutral comment repeated ten times, "Mom needs thirty minutes alone." It ended with The Dad asking her to go to her room, her wailing like an infant and now she is lying like a limp dog across the recliner, sullen and angry. [1]



My daughter needs a psychiatric hospital. She will ALWAYS need a psychiatric hospital. It is what it is. "Hanging in there," praying, hoping, dreaming, learning more psychological tools than my child's psychologist, doling out pharmaceuticals to my child that have a street value that would pay off the principle on my mortgage, not sleeping for nearly two straight months so that Shaun of the Dead would come after me with a broken chair leg, whacking me senseless to the rhythms of Queen, none of it changes the truth that stares us in the face. Sissy is a 110lb. infant with a rapidly degrading mind.

Oh how I wish chemo could cure this.

[1] by the time I hit 'enter' she was asleep. Well, if you're up until 2 am waiting to poop, that's bound to make you sleepy.



10 comments:

Cyndi said...

Oh yeah, me too!

Barb G said...

((((hug)))) No words can convey the love and hurt in my heart for you right now. I'm so sorry.

Frankity said...

OK, only because if you don't laugh, you'll cry:

In my reader, this post just shows the title and the graphic of The Hoff. I thought for a moment this was going to be a confessional on your unyielding love for David Hassellhoff, running your fingers through his thick chest hair, wanting him to whisper in your ear all about himself. And if only chemo could cure this disease... the disease of loving The Hoff a little too much... mmmhMM!

Hope you had a laugh!

Integrity Singer said...

@ Frankity - ROFLMAO! that's hysterical. I needed that, thanks! xxoo

kisekileia said...

Does she regularly use ridiculously juvenile terminology like "make a stinky"?

Miz Kizzle said...

I laughed at the phrase "make a stinky." Childish of me, I know but I had never heard of that particular euphamism before. I plan to start using it when I have to excuse myself from business conferences.

Integrity Singer said...

@ kisekileia - yes. she uses insanely juvenile terminology, even when neutrally corrected to the age appropriate phrases. She rejects them. She also believes in the tooth fairy, santa claus, the easter bunny and more. Staunchly refuses to except that it's fantasy. Will become a heaping sob of tears if you even lovingly suggest otherwise. She is, for all intents and purposes, no more than 18-24 months old emotionally, and that's on a good day.

Lisa said...

My 17 yo son still says he has to pee-pee so I get what you're saying. Maybe the believing in fantasy things like santa, etc is just "magical thinking" run amok. One Christmas my then 13 yo dd came up and thanked me for the slippers I bought her. I was confused, didn't she like anything else? When I questioned her she replied, "well, all of the other gifts are from Santa". I was blown away. We have never had to tell one of our children about Santa - they just grew up and figured it out and kept it to themselves to continue the magic for their younger siblings. I told her about Santa that day and she didn't believe me, sigh... I bet she still doesn't because I heard a similar story about the Easter bunny leaving baskets of "goodies" at the homeless shelter she chose to go live at this year.

J Sam said...

Interesting (and heartbreaking) article about custody relinquishment that made me think of you:
http://www.illinoistimes.com/Springfield/article-8964-when-adoption-goes-wrong.html

Integrity Singer said...

@ j sam - thank you for that link. that is indeed our family's story. I've passed the link on to Sissy's therapist. She knows as well as we do that getting Sissy's behavior to turn around with or without whole family participation after 10.5 years, isn't likely.