Captive

Release the anger that holds you captive by refusing to bear another's anger burden. ~ J. Smith

Sissy has been home since the 16th and despite the holiday, her approaching birthday on New Year's Eve and the outlook of going to yet one more new classroom next Tuesday, she's done remarkably well. She's had a few minor upsets but so far so good. She laughs out loud spontaneously and this time, it's genuine laughter, not forced. She speaks her mind (sometimes too often), she smiles (the typical all-tooth-RAD-grin) without complaint and with glee. She has followed hygiene protocols without ado and accepted her limits (albeit begrudgingly at times, but hey, who doesn't begrudge their limits once in awhile?) All in all, I'd say, right now, Sissy is no longer captive to the anger that once imprisoned her.

Does that mean she's better?

Define "better"? If you are asking is she healed, the answer is no. If you asking if she's stable right now, the answer is a giddy, yes.

How long will it last?

With no immediate demands on her regarding school, homework or household chores, the prospects are good. We'll see what next week brings. For now, I'm choosing to be verbally optimistic even if my heart is quaking in my boots. I'm not faking anything until I make it there, that philosophy doesn't work for me. Instead, I'm taking it ten minutes at a time. Small increments are much more manageable both for her and for me.

I know that that past month and a half my blogging has been minimal. Life has a way of bending and twisting us into coves, eddies and narrow trickling streams. The past two years have been an odyssey that has held me captive in fear and anxiety for my daughter, for my family and for myself. It felt like an eternity; going over Niagara Falls in slow motion. It's nice to exhale, close my eyes and be gently rocked by the slow moving waters that bubble over smooth river rocks.

In the past month I've gotten to take naps and share a bed with Sissy several times and not feared the retribution when she woke up. Oh, she's been very vocal and fitful in her sleep, has been a bear to wake up and has kept as far on her side of the bed as possible so we aren't touching but ... BUT... she's slept with me and not retaliated.

In the past month I've learned that it's safe to be family; to laugh, to love, to be myself, to get irritated and aggravated and blow off steam then laugh at myself for getting so caught up in the mayhem of parenting.

In the past month I've enjoyed friendship, sisterhood, being a daughter and a mother, life, liberty and the pursuit of happiness.

In the past month I've stopped being a captive.

I don't know what tomorrow will bring. I don't even know that tomorrow will come. I don't know will happen a month from now and I don't know that I care. Right now, I'm bundled up in my old pink hoodie with the diva rhinestones, wrapped up under a christmas blanket, drinking a glass of wine and listening to the sounds of three sleeping children, their music playing softly in their rooms while the wind howls and blows outside. The dog is gently snoring and the clocks in the kitchen are ticking. I have peace in knowing that in the past two years, I've remained a woman of integrity, recounting our family's story as I've experienced it - not exaggerating, or embellishing - telling the raw, honest truth of how one adoptive family can be held captive by the wages of abuse and mental illness and still survive knowing that tomorrow we might be headed for the next colossal waterfall.

How Open are You?

For the last three weeks, the kids and I have been hanging out with their biological grandparents' house. They live at the lake in a log cabin home. There are deer, coyotes, wild turkey, hawks and more. It's quiet, it's peaceful, it's beautiful.

I'm sleeping in their great grandparent's bed, their black and white, 1953 wedding photo centered above the head board, a very young bride and groom. How Sissy looks like her! When I wake up each morning, there is a 30+ year old photo of their birth mom and their aunt in matching dresses. Adorable toddlers with bright smiling faces. The room is filled with remembrances of them, the two people I considered as grandparents of my own.

There isn't a thing I don't love about open adoption. Today the kids played for hours with their cousins and are currently in the basement snuggled up on the sleeper sofa watching The Smurfs. It's so much fun to see them together, laughing, rough-housing, fighting, eating. It's what family is meant to be.

Right now I'm sitting at the kitchen table with two of their aunts, WG so very much like her Aunt A, Noni is making gluten-free cookies just for me. We're all wore out from a day of cookie baking. "How many dozens?" I asked her. Noni doesn't know, doesn't want to think about it. Noni's cookies are gifts. Love in a tasty morsel. And part of the love is spending the day in the hot kitchen making cookies for ... 10 hours now. Was up til 1:00 a.m. working on caramel/chocolate covered pretzels with their oldest cousin who will be 17 in January. Fun. Fun, fun, fun.

Is an open adoption easy? For both parties, the answer is simply, "no." An open adoption is a marriage of two families. That's a marriage of each family's quirks and idiosyncrasies and insanity. It's also a marriage of each family's best: their interests, ideas and love. All of it for the best interest of the adoptees. If you get into open adoption with any other thought in mind, it won't be a successful match.

For me, choosing open adoption was a no-brainer. My father died when I was 12. Adolescence and approaching adulthood was hard because half of my identity was gone. I'd look in the mirror and wonder What part of me is him? I only had my mother's reflection on which to form my identity so I always felt like half of me was missing. I couldn't stomach the idea of doing that to my children. Having already established a relationship with their biological family long before the kids were a thought, we didn't blink. Open. Period.

I wouldn't change a thing about it. I didn't just adopt three children, I adopted four generations of extended family. How open are you?

Merry Christmas to ME!

Fall of 2005, Sissy entered the public school system. It is nearly 2012 and finally, FINALLY, she has an IEP!!!!!!!!!!!!

Merry Christmas to ME!

And what, pray tell, finally qualified her as OHI? The private p-doc wrote a very long medical history detailing her medical impairment. The clincher was the fact that she had two consecutive residential hospitalizations within one year.

So how do you get your kid an IEP?
Get a great p-doc that will paraphrase two 6-inch patient files on one 8x11 piece of paper, hand written, no larger than a 10 point font. Suffer through endless meetings for six academic years, be told by one school that it is YOU that needs the psychological evaluation, not the child, get a waiver to transfer to another school, be told that your child needs to come off her psych meds so the testing will show that she's learning impaired and not just drugged out of her mind, be accused endlessly that the reason the child is under achieving is because YOU are a lousy mother that doesn't love your child, call the state department of education and get in the good graces of the head of special services with the state so that she gives you her direct phone number with the directions to tell the special services director in your county that if they don't agree with what you're asking for your child, that they can speak to ME oh, and make sure your child boomerangs in and out of RTCs and crisis stabilization units for two years.

And that will do it!

I'm so happy I could kiss everyone. I think I'll even plant one big juicy one on Sissy's face tomorrow when I pick her up for discharge.

T - 21 hours and counting...

She did it!

Sissy had a "gold star" weekend! Wow. That's awesome.

Not gonna lie

I'm not going to lie. I'm nervous about Sissy coming home next Friday. Our family session yesterday only emphasized the reality that she's still not cluing into the reality of her actions and the consequences for them.

Thursday night she was given the opportunity to go off campus and drive around the community to view the Christmas lights. The hospital is in a great area of town, lots of students, doctors, professionals, and the like in addition to having many older homes that have unique style. A drive to see those light displays would have been awesome.

So Thursday morning I called the unit to talk to Sissy - wish a happy morning and that I was really rooting for her that she would get on green level behavior status and get the reward of going on the outing. She was currently on yellow.

I called that evening and she said she was still on yellow and didn't get to go. She told me she didn't know why they kept her on yellow, that they didn't tell her. All of which is bogus because mid-day the unit meets for group therapy and the residents are told their level status, why it had been changed and if it was lowered, what action plan each patient can make in the future to alter their behavior for the positive.

During family session, the unit director explained that Sissy had to be carried out of the cafeteria by a male staff member and taken back to the unit while she kicked, screamed and tantrumed. Sissy's explanation? "I was only crying a little."

The unit director redirected Sissy to the truth, which she would not acknowledge. The unit director spent a great deal of time talking about what is expected of a child in a home environment, what behaviors are acceptable and which aren't and that in order to get discharged, Sissy would have to start proving that she was ready to accept those limits. (The hospital has not yet alerted Sissy to her discharge on Friday) Then we concluded the session with Sissy agreeing that she would have a "gold star" weekend [1] to prove that she was ready to do what was expected of a child living in a home environment.

Then last night Sissy called her grandmother and said the outing was switched to a theatrical production of The Nutcracker instead of viewing Christmas Lights and that she wasn't disappointed about missing that outing because she'd seen that production while she was in a different facility two years ago. Her color? Still yellow.

O.o

This morning at the elementary school's "breakfast with Santa" event, the school counselor talked to me privately. Apparently WG had been in her office on Friday to talk through her fears and anxieties that had crept into her school day. WG confessed that she was nervous and scared about Sissy coming home.

Me too, WG. Me too.

AB's perspective? He says maybe Sissy will at least be good for Christmas Day and her Birthday because she likes them and she might try harder on those days.

Best Christmas present ever? Sissy truly knowing and accepting that what is expected of her at home is reasonable and that she has the strength and self-will to comply without self-harming, threatening or violent behaviors. I'm not holding my breath for that gift to be wrapped up under the tree on Christmas morning. One way or another, the rest of us have to survive her trauma-induced anger and dysfunction. If I hold my breath in hope, I'll die.

Well, that's enough of that for today. WG's Brownie troop is going to the nursing home to deliver lap blankets and Christmas bracelets that the girls made on Thursday. But WG is mostly excited about singing carols to them. I love taking the girls to these types of events, we are blessed to have such a giving, kind-hearted troupe. Truly, all of our girls are super super sweet. And AB? Eh. He'll tag along, pace, whine, stim and be generally miserable.

It's going to be GREAT!!!!

[1] weekend staff apparently have a reward system for the top behaving residents - an effort to get them to behave accordingly in the less structured weekend environment. A Gold Star is awarded to the residents that "accept limits" and "do what is expected without tantrums or disrespect".

Plus Some

Original poetry by author of this blog. Copyright laws apply

Purpose a journey in life

Walking tall and sure.

Stride the rocky paths

With footing secure.

Onward toward the setting sun,

Downward, run.

Wind stings the face,

Warm tears trace.

Go! Yield not to never.

Anger, fear, loss, pain

Tangle the weary soul

Nothing shall they gain.

Through desert sand,

Cross grassy weeds.

To mountain tops,

Trudge swampy reeds.

Stand upon the ocean shore,

Dare the sea to swallow.

Laugh with glee

When waves roll back, hollow.

Breathe deep the salty air

Closed eyes, take it in.

When purpose driven

The elements never win.

Be granite on a mountain top,

A cedar in forests deep.

Butterfly across the meadow,

An owl that does not sleep.

There is nothing I can not reach

Nor plague will I succumb.

I purpose in my journey

To touch many, plus some.

To touch many, plus some,

To touch many,

plus some.

Up with the Birds

~Coldplay

An unwrapped "present"

Merry Christmas, it's a girl. She'll be 12 on New Year's eve and she rejoins our humble abode on the 16th.

*sigh*

Round 293,641 and counting. *DING*

yes, yes, positive, negative, positive. *rolling eyes at self*

positive: she comes home on the last day of the fall semester so there's no need to put together an emergency homebound education plan for the last week of the semester as we originally thought.

positive: her IEP eligibility meeting on the 15th (how many have we done thus far? I've lost count) should SHOULD find her eligible for an IEP with OHI status and EBD classroom for the first 60 days in the spring semester to transition her slowly back to mainstream classes. I'm not holding my breath but yes, that would be a wonderful christmas present indeed.

negative: according to the staff in the phone conference this morning, she still has anger issues and difficulty finding ways to manage her anger in appropriate ways. She needs to work on her social skills and be praised when she only cries during tantrums as opposed to exhibiting self-harming, threatening or violent behaviors.

[aside]: anyone praised a child for a tantrum? 'cuz that just sounds ... odd to me. Just sayin'.

positive: she's so darn cute and she's lost weight now that she's off some of the meds and is managing moderately well on her current drug cocktail.

Oh, and ... *batting eyes demurely* I get to make friends with one more new IFI team!!!!

Hanging in the balance - barely

My mother ended up in the ICU last week with the physician declaring a poor prognosis. A call to the Sissy's hospital to alert them of the family crisis two days before Thanksgiving and the unit director made it clear that we still needed to follow through with our weekend leave plans for Sissy. "We discussed it as a team and we think this is the perfect opportunity for Sissy to prove she can put into practice what she's learned here, especially in a family crisis."

O.o

I replied, "You do understand the gravity of our family situation, right? Did I make it clear how ill my mother is? And you want me to drive a total of 10 hours over the next three days to get a child from a psychiatric hospital and HOPE that she behaves all while I process my mother's situation?"

"Yes."

Meanwhile, with no planned schedule for the week, AB was off his routine, had already had one near miss with a rage and was stimming hard and fast. He had been awake the night before past midnight because he couldn't sleep and I was afraid he was headed into another manic phase. "Fine. But I'm leaving my son at home with his dad. He can't make that trip, do a family session and NOT have a rage while we're there."

WG and I drove the distance the day before Thanksgiving, did a family session and drove back with Sissy. I had a narrow window to get to the hospital to see my mother because I left town believing she was still in the ICU. I dropped the girls off at the house and went straight to the hospital, glad to learn she'd been moved to a regular room. Then I returned home to Sissy needing a shower, cookies needing to be decorated, sweet potatoes and a ham requiring cooking and a four hour round trip the next day staring me in the face to celebrate Thanksgiving with The Dad's family.

And Sissy, not home for four hours was already at her games, refusing to shower correctly. Kid you not, my daughter emerged from the shower with her pajamas on, hair bone dry. But wait, there's more. She hadn't even brushed her hair or removed the pony tail bands. And when I said, "huh? what? um..." She screamed and dropped to the floor and demanded that I accept that she had indeed showered correctly and I was on the phone with the RTC begging for assistance. So the staff told me she wanted her hair to look pretty for Thanksgiving, that it was all she could talk about and maybe I should settle her down by offering to re-do her hair the next morning after she showers again, properly.

I got up at 5:30 to put the food on and went back to bed. Got up at 8 ish to get Sissy in the shower and on the way past my bedroom door says, "well, actually, I want my hair to be a different way - i've changed my mind."

O.o you've got to be friggin' kidding me. my mother is in the hospital, i'm cooking food for thanksgiving, AB is stimming his arms off, we have to do a two hour drive and be there by 12:30 and after screaming at me last night and the hospital convincing me it was all about her hair, after driving five hours yesterday, after, after, after and now, NOW she tells me she wants her hair different?!?!?!?! But what I said was, "Uh. No. The Staff said you liked that hair style, that it was the reason you were upset. You're getting the same hairstyle."

"but but but..."

"You don't get to scream at me last night about your hair and then ask for a different style this morning. No."

"fine."

Seriously? I need this?!?

Then halfway down there she was stick poking like crazy, rocking side to side in the back seat complaining about everything under the sun and then when i didn't respond began chanting very quickly and loudly, "I'm bored I'm bored I'm bored I'm bored I'm bored I'm bored I'm bored"

So i talkie-d The Dad who was in the truck ahead of me, "I'm about to blow a stack. We need to switch. now."

We pulled over and all I said to her was, "You're switching with your brother and riding the rest of the way in Dad's truck."

"What? HUH?!? I didn't do nothing wrong?!!! That's not fair!!! I didn't do nothing!"

"Just get in the truck." I gently nudged her rigid body into the cab and handed her the stack of markers and coloring books, closed the door and mouthed to The Dad, "Good luck."

And that's how it went until Saturday when I took her back and picked up my sister at the bus station. My mother came home from the hospital on Sunday while AB was at riding therapy, my sister is staying at her house, the kids went back to school on Monday, it rained, I slept. The RTC called based on the evaluations of the TL's from the last two weeks, I'm very disappointed with Sissy's performance so I'm requesting medicaid give her another month.

So I went to my mother's house with a bottle of wine, drank it up with my sister and laughed through Laverne & Shirley.

When will medicaid give us their answer?

Next week.

When is Sissy approved through?

Next week.

So when do you get Sissy?

Won't know until next week.

Oh, and her IEP meeting was canceled and rescheduled for the 15th and I said, "you do realize she might be home NEXT WEEK"

"Well then we'll just schedule and emergency meeting."

And how is it NOT an emergency right now? "Ok, whatever."

So I've quilted until my eyes are blurry and stayed away from the blog so I don't say inappropriate things in my blind fury and frustration and worry and contempt and Oh.My.Stars can't it get any crazier?

Well yes it can. Because today was the last day I saw the kids' p-doc. He's no longer taking medicaid patients so both AB and Sissy are without a p-doc until I figure it out and right now, the best option is to make the two hour trip into the metro area. In other words, even after Sissy discharges, I won't be dodging the bullet of that mind-numbing nauseating drive. Oh, and the p-doc is recommending we switch AB's anti-psychotic because his teachers are complaining so much about his performance at school but he didn't want to begin a titration that he couldn't follow up with so I've been deferred back to AB's developmental delay specialist - the same one that wanted to put him on Amb!en last summer.

*sigh*

Stressed much?

Why yes, yes I am.

And now I will return to my quilting and wait, again, for strangers sitting behind desks to decide the fate of my family's life for the next month. You know, the HOLIDAY season.

This and That

It's been a VERY busy week and a half.  I'll be back later with more to talk about but for now, will you consider visiting my Etsy store?  We're still working on paying off AB's dental appliance bill.  Thanks!

http://www.etsy.com/shop/peaceinpuzzles

Resistance is Futile

how did it go, how did it go...

good, bad but neither ugly nor beautiful.

I'm exhausted. She didn't stop talking. When asked to stop talking she said, "I didn't even know I was talking." She just chattered and chattered to no one about everything. It fried my nerves.

OK, I've done this therapeutic parenting thing long enough to know that when discussing an event, one should begin with a positive, then add the negative and finish off with another positive. Let me try once more.

She was well kept when I picked her up - clean, no stains, hair tidy, face washed. She was excited to see me and happy to be going home for the weekend. She was pleasant on the trip home which was easy enough with a movie playing (thank god for the advances of modern technology!) She went straight to sleep and woke up cheery on Saturday morning. She didn't begrudge the yard work we all did as a family and was excited about our fire pit and s'mores plan for that evening, the children's reward for their hard work. When she got upset it was a tantrum and not full blown raging.

She had to be redirected at every turn. She didn't stop talking. She was rude and short-tempered. She showered but didn't wash so we made her shower again (this after profuse lying and complaining that the staff at the hospital doesn't care how long she showers and never checks after her.) She couldn't occupy herself, had to be given instructions even just to have "fun". She complained of belly pain for nearly four hours until she figured out that I wasn't going to go berserk about it. She tantrumed in her room, kicking and punching the walls. She picked fights with WG, she wouldn't receive correction, she blamed everything on everyone else and she asked me to get her a lot of stuff. To the point of my distraction. It was everything I could do to keep my stuff together.

But she settled down after her tantrum, 30 minutes before it was time to return to the hospital. She let me rub her back and talk to her about some of the things that need to be changed in order for living at home to be successful for her. She didn't launch into primal rage screaming and didn't threaten to hurt herself or anyone else.

How'd I do? Do I get the nod for therapeutic parenting?

Good. Now I can breathe. *sound of air escaping a large balloon that is now flapping and flitting all over the room until it empties and lands on the floor with a wet 'flap'*

And we get do to it again on Wednesday AFTER I bring WG and AB with me to the hospital and do a family session with Sissy and the therapist. Show of hands, how many of you think AB is going to handle that trip and therapy session well? Oh, look at that. No one has raised their hands.

Right, then. Whose bringing me a shot of vodka Wednesday evening when I get back with them knowing I'll have to turn around the next day and take them four hours round trip for Thanksgiving dinner with The Dad's family? Ah, there we go, much better. All of you have offered to commiserate with me and alcohol. Thank you.

Meanwhile, I'm quilting up a storm. I'm happy to report that I've got a few commissioned projects in the queue and AB's dental bill is slowly being whittled down. Keep your eyes peeled, I'll be adding some Christmas items on my Etsy shop. And once again, thank you SO very much to those of you who have contributed to my vices. I still wonder in amazement at the love and generosity I've gotten. From a new sewing machine to yards and yards of fabric, I'm one lucky gal indeed and I owe it all to you, my readers!

Now I'll have to surrender some of my coveted space in the garage/den (which has officially been deemed "The Happy Zone") to make room for a Christmas tree. Some of you may recall last year's tree debacle. AB suggested we put up a tree this year in The Happy Zone and after much deliberation, it appears that his idea may prove best. It just means I have to shuffle my quilting a wee bit.

I'll get over it.

With Sissy having left for the hospital before school started, we didn't get a annual portrait of her so I took some head shots yesterday and got them printed out at the local pharmacy. We hope to get a family photo over Thanksgiving as it's been three years since we had one. That's too long but the past few holidays have been so hard and we've endured so much as a family that the thought of encapsulating that grief and trauma in a photo was too much to bear. This year I'm marginally optimistic. Enough to get a photo or two. Which is saying A LOT. Turns out proz@c's good for a lot of things.

So as I wrap up my morning, the coffee in my cup ...hang on a sec ... now officially gone (I had to drink the last sip before I could type that because otherwise I'd have been lying), WG's friend leaving in a few minutes after a long overdue sleep over, bills waiting to be paid, holiday groceries waiting to be shopped for and quilting in The Happy Zone neatly laid out last night so I can piece the blocks, I shall conclude with a thought or two about the shopping TL.

The original thought behind that shopping experience began when the therapist asked me what events at home were the most likely triggers for Sissy. I replied that any community outing was a challenge for both her and AB. She asked for more specifics. I began listing the places I consider taboo to take them too unless I absolutely have to. Of course, the grocery store was on the list.

This conversation was taking place during an FTM (family team meeting) which was staffed by the CBAY representative and the FSP (family support provider) who I'd met only two minutes before the discussion although she's "been on the team the whole time", a team that got it's inception in JUNE... I digress. Also in attendance was Sissy, myself, Sissy's individual therapist and the family therapist. We were all huddled in a room about 9x8, door closed, chairs and a table. It was cramped. Sissy was rocking. All eyes were on me. I was the only one talking and the general theme of the FTM was that we collaborate as a team to think of ideas in which "the family could be supported in the home environment to ensure a successful transition after discharge". (really, I get so freakin' tired of all that happy-go-lucky mumbo-jumbo therapy talk. *enter fake vomiting sounds here*)

ANYWAY ...

The therapist landed on the grocery store thing. "What about the grocery store is hard for you and Sissy?" I tried to explain the past images and melt downs and rages I could see in my head and tried to verbally reiterate those events and with all those eyes on me I felt like I was bumbling and failing to communicate and Sissy was rocking and ... the therapist said, "would you be willing to do a TL at the grocery store so we can trouble-shoot those problem areas?" and like a deer in the headlights I said, "yes." because after all, it was an FTM and we were working as a team to help find successful ways for Sissy to transition home and if I'd said, "no," then the next question would have been "well what interventions ARE you willing to try, mom? We're here for YOU, to help YOU" and all those eyes staring at me and Sissy rocking and that tiny room with the walls closing in all around me and all i REALLY wanted to do was scream and shout and holler and rock like Sissy was doing because at that point, that really did seem like the best idea EVER.

Maybe I should have?

maybe my ability to keep my cool and not rage back at the machine called mental health is to my detriment?

Maybe if I went wickity-wackity-loo-loo too then someone running the machine would say, "huh. guess we're stressing out mom too much with all this. perhaps THAT's the problem?" Maybe I should have had a panic attack in the grocery store instead of being a good girl and taking my anti-anxiety tabs? Maybe I should have ...

Aw heck. I don't know what else I should have done. I'm tired of thinking about it all the time. It makes my head hurt. And it doesn't matter anyway. Mental Health is the Borg. Resistance is futile. You will be assimilated.

And that's why we did a grocery store shop with the therapist that never gave ME a positive/negative/positive comment about MY performance.

ETSY!

It's been an insane week but I finally put my items on Etsy.

Peace in Puzzles on Etsy!

I'll be adding Christmas items shortly so don't despair, they are coming. Also coming in January, some full size quilts so bookmark my page!

I'm off to pick up Sissy this evening for our second try at an overnight stay. I'm hoping it will go well but I'm not entirely optimistic. That is, I'm anticipating another colossal fail.

But the quilting will keep me going. Hurry quick to the site, the Thanksgiving coasters are for sale and I'd like to drop them in the mail to you tomorrow so you have them in time!

Crap on a Cracker

The road is long. 140 miles one way across mind-numbing pavement. In two years, I've logged 30,000 miles on my van, the bulk of those miles easily attributed to road trips to see Sissy.

Yes, two years. This November 23rd. It's a long time to be actively in crisis as a family. It's a lot of miles on the road. It's been out of hope and determination that this half-smiling face that is the spitting image of her birth mother, might be functional in a home environment.

 

I won't say "heal" anymore, which may be taboo in some adoption circles.  After two years of active crisis, the pinnacle of the previous nine years of turmoil attempting to help my daughter, I've downgraded my expectation and hope to "functional".

It's been a long, monotonous, weary, exhausting journey.

And it's not over.

The emotional and mental anguish will likely ebb and flow through my veins like the tide for the rest of my life. PTSD is alive and well in my body. Some days I can't separate it from my anxiety. Other days my body just says, "Nope. No way. Not gonna happen. Forget it."

I'm battle weary, war torn and despairing. This weekend we'll try again with another overnight visit. I WANT to be positive. I WANT to hope it will go well. I WANT my daughter to be back under my roof and be happy to be here. I WANT her functionality to have increased over the last four months. I WANT it. But I don't believe it's possible. Essentially, I'm telling myself what I want can never be and yes, I'm very much aware that my own mental approach could become a self-fulfilling prophecy for Sissy. She needs to believe in herself, she needs to believe that I believe she has overcome. She needs to hear my positivity.

I'm all out of positivity.

Monday I went to the hospital to do an off-campus family session. The therapist went shopping with Sissy and I. Imagine this please. I had to plan my grocery shopping list, with coupons and without any perishable items. I had to get WG and AB dressed, fed and off to school in enough time to be at the hospital at 11:00 A.M., planning for the construction traffic (20 miles of it both ways). I had to remember my list, my coupons, organize them according to the store's layout (only to find that the Kroger near Sissy's hospital is not laid out the same), pick up my daughter and the therapist, discover that we can not go in MY vehicle because it's hospital policy, dash back to the van to grab my grocery sacks, purse, list, coupons, etc. all with Sissy giddy as crap because she hasn't been to a grocery store since August. Then I get in the vehicle with the therapist and Sissy, instruct the therapist where the grocery store is (she doesn't live in the area of the hospital so even though I live 140 miles away, I have a better command of the local area - go figure). Thus, I'm navigating while Sissy is yammering about ... well, darn it, I love her and she's cute as a button but the girl can yammer about nothing and she can yammer for a.very.long.time.without.taking.a.single.breath.

Then three of us shop in the crowded store (who knew 11:30 a.m. on a Monday morning would be so busy?!) and the only correction I got from the therapist was "take of your hospital ID badge to protect Sissy's privacy" and "next time bring a clip board and a pen and organize your coupons to streamline the shopping process".

o.O

Oh, I attempted to defend myself, a skill I am working on in individual therapy for ME (by God, I'm sick of Sissy being the only patient in this family) but what was the point? She was already writing it in her notes that those were the suggestions she had for me.

OK, show of hands. How many of you, given that set of circumstances (and remember, I had to shop in a limited amount of time so I could be back on the 140 mile trek east bound to pick up AB and WG by the 3:30 bell) would have remembered to #1 - organize your coupons according to the lay out of a store you've never been in and #2 - remembered to bring a clip board and #3 - even if you remembered your clip board would have remembered to snag it in the 10 second impromptu car-switch just as you are about to leave for the grocery store?

Anyone?

Anyone?

Anyone?

yes, well, now it's in clinical notes that this is how i've failed and what I need to do in the future. Oh, and the tag thing? I wear a name tag nearly EVERY DAY now because I'm either at the school volunteering or at some meeting for Sissy. It's a miracle I remember to remove the dang things before I launder my shirts and ruin them! And why did the therapist mention the tag in the first place? Because a nosy customer overheard me showing Sissy how to read a coupon and locate the proper item so he remarked that I was being a good parent for not only teaching her how to shop at such a young age, but that I was teaching her how to save money. Then on the heels of praise from a stranger, correction from the therapist.

I didn't panic on the way home - took my tabs every 30 minutes, took a coffee break, arranged with The Dad that he would pick up AB and WG so I didn't have to face the time squeeze and got home in time for a clenched up belly, severe bloating and gas, extreme fatigue and lethargy, took a phenergen and went to bed after watching Jane Eyre. Then I slept almost all of today until I had to go to the school to observe AB because his teachers have really been complaining about his classroom behavior lately. As if I didn't have enough to contend with.

I'm not looking forward to Friday when I (or The Dad) go get her. I'm not looking forward to her tantruming because we designated this coming weekend as yard weekend several weeks ago and it needs to stay that way because there's winter prepping and Christmas decoration prepping and Thanksgiving and and and ... I'm not looking forward to her yammering. I'm not looking forward to the bickering between siblings. I'm not looking forward to the disrespectful attitude. I'm not looking forward to putting the alarm back on at night after four months without it. I'm not looking forward to the grilling from the therapy team when she returns Sunday night so I'm also not looking forward to the road trip to take her back.

I know the quilting will relieve my stress but I'm so stressed, I can't move. Can't think. Can't. I just can't. And that pisses me off. I'M not better. I'M not ready for Sissy to be home. But there is no concern for us, never has been. Sissy's the identified patient, her needs are paramount and even though I drove 140 miles one way to go grocery shopping for non-perishable items with a psych patient that hasn't been in a grocery store in four months, I erred because I had no clip board or pen and my coupons were not tidy.

Crap on a cracker. Someone come tidy my *bleeping* coupons and surprise me with a dollar store clip board (in purple) with a matching pen that I can keep in my van at all times for the occasional 280 mile round trip grocery shopping excurstions i am prone to make to appease medicaid and therapists. Really, i should be more prepared, *tsk tsk*

Conversations with Sissy

The following is not an exact transcript of tonight's call.  It's a conglomeration of the last several times I've talked to her both at the hospital and on the phone.  It's a fair representation so even though I've run three conversations into one, you still get the general idea.  And to be fair, since all the conversations go about the same way, this disclaimer is moot.

Phone call with Sissy tonight. 

"are you going to get fun Friday this week?"
"we don't have school friday. so it's fun thursday instead."
"so are you going to get THAT?"
"i plan too."
"Have you gotten all your classwork done?"
"I plan to."
"tomorrow is thursday."
"yes."
"so is the work done?"
"not yet but I plan to have it done."
"what's the outing going to be?"
"only the greens get to go."
"what's the outing?"
"I don't know. only the greens get to go."
"They don't tell you the outing on Monday?"
"yes."
"They tell you?"
"yes."
"So what's the outing?"
"only greens get to go. i don't know what they'll be doing."
"what level are you right now?"
"yellow."
"so you don't have your work done and you're not green?"
"yeah but I PLAN to!"
"and how's that plan working out for you?"
"It's not fair! we only had three days instead of four this week!!!!"
"But you knew all the work you had to do on Monday?"
"yes. but there's no school Friday. and they change my color without telling me why. I don't do anything wrong. They just change my color because they are lying on me."
"the staff is lying about your behavior?"
"no. well, yes. they say I tantrum but I only screamed at them for thirty minutes this time and then I did what they told me to do."
"you screamed at the staff?
"yes. but I calmed down after and I used a coping skill."
"but you screamed at the staff so that made you yellow."
"yes. but they always change my color without telling me why."
"what is the consequence if you scream at staff?"
"they change my color."
"so... are you going to be green tomorrow?"
"I PLAN to."
"but will you be green tomorrow?
"huh?"
"will your work be done, will you be green, will you get to do the fun thursday outing?"
"no. But I plan to!"

and this, my friends, is why I'm on medication! Abbott and Costello thought they were so clever.  Not so.  They've got nothing on Sissy but in the interest of amusing you, here's their best attempt to mimic my child.

She Emerges!

Another internet hiatus. Seems to be a new norm for me but not because I WANT to be away, rather because there is so much fun and living and miscellaneous household chores to be done. I've relished my days filled with busy, busy, busy. I didn't realize how much of my energy was being stolen just in recuperating after Sissy's rages. Tired? Still very much so but at least I'm getting good rest. And I'm only twitchy every other day at night so here's to progress!

Speaking of progress, we managed a near miss with a discharge for Sissy. The new psychiatrist at the hospital decided to change her medication and did a direct doc-to-doc conference with the APS review board regarding Sissy's medical care. She won't be discharged on Tuesday but whether or not she'll get another full month is still up for debate. We should get the final score today.

In the meantime, we are actively preparing for discharge, a first for us. I will attend another CFTM on Tuesday followed by a short visit with Sissy. Then on Wednesday we will finally be discussing her case with LIPT. I've already alerted the special education department that there is no way she should be put back into a mainstream classroom after being in a residential classroom since March 8, 2011. Here's hoping that issue will be resolved at the LIPT meeting. Plan B is The Dad and I will continue to discuss and contemplate whether Sissy should be home-schooled for a brief interim to re-acclimate her to public community life.

Lastly, as part of APS requirements for transition, we will be doing weekend TL's including overnight stays. The objective is to show whether or not Sissy is able to transition home successfully or at least with minimal discomfort to all. And if it proves to be a colossal fail, then APS will review that information and will likely approve more time.

New changes (as if mental health never changed) include our IFI team from this summer is a bust. POO! Because that team had it going on in spades, first team to ever have a true idea of what was going on with Sissy and the rest of the family and then to advocate for ALL of us. Moving onward (and hopefully upward), Sissy's CBAY team found a new IFI agency that is also a core provider. We'll be staffing with them soon as well. Here's hoping they know RADs. If not, it will just be a waste of time for all (and more than likely, more finger-pointing at The Dad and me for our inability to correctly parent an un-parentable child.) Sissy still won't qualify for CBAY waiver dollars which puts us in the lurch for providing respite and other community wrap services that will help her. Whatcha gonna do? It was a crap shoot hoping she'd qualify twice.

And why do we care about a core provider? Because the children's local private psychiatrist is no longer accepting med!caid as of the 31st of December. Which means we need a new psychiatrist. Which means in our community, it's the other private psychiatrist in town (and I've met her and we don't "jive" - parent/physician relationships must be successful for a child's health to improve) or the local teach hospital's intern psychiatry team. Uh, yeah. NO. A core provider agency works with a contracted psychiatrist and will be able to staff both AB's and Sissy's cases. Plan B is to find a psychiatry team in the metro area, requiring the four hour round road trip once a month to take both of them to the doctor. It sounds insane, I know, but I'm leaning more toward Plan B. Core Providers through IFI agencies sounds like a second-rate plan because those agencies are always in transition. And all I've got to say to that is "ENOUGH TRANSITION!"

So you see, with all of that transpiring in the course of four days last week, there wasn't much else I had time to do beyond household chores, minor fixes and repairs to the house and of course, quilting!

I promised pictures. I keep my promises.

See this adorable young man?

His dental appliance is working its magic and should be off in time for Thanksgiving. Through commissioned quilts, I've already begun paying off the $900 bill not covered by med!caid.

The Commissioned Quilts:

I plan to make at least two or three more I Spy quilts. Like it? Look for it soon! I'll be posting items for sale on a different site and will link it by the end of the week.

Also Available

Thanksgiving coasters: sets of 8

I'll have pictures of Christmas Coasters up by the end of the week.  Another four sets of 8.
In addition, just in time for Christmas, I will have three or four Christmas Table Runners available.

And what about that Breast Cancer awareness bag?

I'll have three available for purchase and I can make more if there is a demand for them.  I will also be making purple for Pancreatic Cancer awareness.  What to represent another cancer awareness?  Awareness ribbons Just tell me what color you want. (not listed at the link is LGBSA but I will happily make a rainbow bag!)

Heart String Quilt:

I will be making at least two more of these, colors are representative and not exact.  I will be doing a more monochromatic theme with a central diamond color throughout as seen here.

I have plans for much more but that's just a taste to get you salivating, thinking, planning and wondering what you want to purchase for the holidays.  I'm also willing to talk about custom quilts.  Just email!

Here's AB and WG for Halloween as John Lenon and a black dog: (yes I made their costumes too!)

Quilt for four straight months? OK!

It's been busy here. And I've been sick. And avoiding. Avoiding the indeterminable truth that this week med!caid reviews Sissy's case and thus far, she's never made it past a three month stay at a hospital. Oh to hit the four month mark...

Tomorrow I make the trip to the hospital to attend the DBHDD review of Sissy's case, a semi-annual event that just makes my heart go pitter-patter. Not cupid's pitter-patter, the cardiologist's tachycardia pitter-patter. Apparently DBHDD from our region lives in Candyland because they don't seem to be aware of the LACK of resources we have for mental health. I recall arguing with them in April about a local agency that closed last November that the DBHDD representatives insisted was still available for youths and adolescents. Oh, and the gracious comment that I should consult my church for mental health assistance for my children. So much for the constitution declaring we shouldn't mix church and state.

For a week Sissy didn't call on her call night. Sometimes I call first but then I get the notion to see if she'll be proactive and initiate a call. I'm usually right when I assume that she won't. But she made sure to call last night to let me know that she missed the hospital's Halloween event because she had a tantrum in class that day. Must have been some kind of tantrum to warrant the punishment of missing a holiday activity. I'm thinking more along the lines of quiet-room restriction during a rage? But getting those kinds of admissions from Sissy are close to impossible. She is keen to deflect, declaring "I don't want to talk about it," as her way of evading the hard truths about herself.

So we wait. Just as the clocks in my kitchen tick and tock, alerting me to the passing of time, the proverbial clock of med!caid's financial patience with my daughter's mental health progress ticks and tocks. Will she be home by next weekend? Your guess is as good as mine. Will we be prepared to transition her home? Nope.

I promised photos from the quilt retreat and I intend to fulfill that promise, tomorrow. Or the next day. I have made some lovely Thanksgiving coaster sets that will be available for purchase. I've also picked up oodles of pink fabrics to make several more breast cancer awareness bags. I've also got lots of fabric to make more I Spy quilts and because of generous donations from my readers, I have oodles and oodles of fabric to make other quilts. AB's dental appliance is working it's magic but now I have to work my magic to pay that bill. So if Sissy does indeed return next weekend, I can just quilt away my blues. I think I'll just quilt straight through to March and Orlando which, incidentally, is only four short months from now.

Reality

Reality bites worse than an empty bobbin five inches from the end of the last seam to sew on a king size quilt.

The quilt retreat was wonderful, as usual. Although I'm always a little sorrowful that there aren't more women my age quilting. The gals in our group are all at least fifteen years older than me, great fun to be with, tell me all kinds of tales about the pleasantries of female aging and tease me a bunch. I just wish some women in their thirties attended too. I'll post pictures tomorrow.

Coming home is hard because I'm always forced to face the reality that I live a challenging life. When I'm away I can pretend for a little while that I'm just a run-of-the-mill woman that likes to spend her free time with fabric and thread, lulling myself to sleep with the hum of a sewing machine.

When I got home I saw on the green board [1] a note about an upcoming transition meeting for Sissy. My heart started racing immediately. I thought to take some of my panic tablets but instead just closed my eyes and breathed through it. Like it or not, Sissy will be home eventually. And it will likely be within the next few weeks.

I can't escape the feeling that I'll be returning to hell. I want to think better of her, I want to believe that this time around she'll have gained some ground and will be OK at home. And by "OK" I mean, not raging, not being violent, not wanting to hurt herself, not defying me at every turn, not being mean or hurtful on purpose, not dissociating. I know, I'm shooting for the moon. Pie-in-the-sky ideal that I should desire that my 11 year old daughter be a typical annoying, hormonal, pre-adolescent that guffs at her mother one minute then hugs her and asks for a favor "Please, pretty please with sugar on top? I love you Mommy!" the next.

Nope. All I can see is hell, fire and damnation.

I don't know why it has to be one or the other - a beautiful, peaceful life without my daughter that is filled with grief and sorrow that she is gone or an angry, rage-filled, violent, tempestuous stormy life with her that is filled with grief and sorrow that I can't help her, coupled with anger and fear that I'm being expected to raise her when I know I can't; when I know that it destroys my family for us to even try.

No matter how hard I try to bend and reshape myself, my life and my relationships, it always comes back to this hard, cold truth: I can either have a nice life without her or a miserable life with her and I'm powerless to choose when I get either. Money, Med!caid and the Great State in which I reside dictate my day's contents for me.

All I've got for that is Oh, look! a new quilt magazine just came in the mail. I think I'll make the one on the cover... half-square triangles in batiks, twelve inch finished block, posts and sashes (I think this time I'll do a nine-patch post with triple sashing, that looks so pretty) and ... oh look! there's a coupon in the Sunday paper for 50% off any one item at Jo@nn's. Guess I have to go shopping, right after I finish this coffee...

[1] it's a dry erase board that is green, not white, thus we call it the "green board"

AWAY!

Away I go, off to the annual quilt retreat with the kids' bio-grandma.  (AKA - Noni).  Three nights and three days of quilted bliss.

I shall be returning with goodies for some Orlando moms that have commissioned I Spy quilts, among many other things.  Stay tuned because I will be making some items available for sale on e.bay.  (That $900 orthodontic bill for AB looms large) [1]

The director/administrator of our quilter's group was recently diagnosed with breast cancer.  I made her a surprise.  I can't wait to give it to her tonight! [2]

I leave AB and WG in the capable hands of The Dad. We all know Grace won't miss me. Probably won't even notice that I'm gone. Crazy dog. Oh, that reminds me! I have to pick up her dog food before I head out of town! (The Dad recently discovered how exasperating it is to take AB shopping. I'll be kind and spare him the hassle of a grocery store run with AB in tow.)

I gave Sissy a quick call this morning since I'll be missing her evening calls. Well, that is, when she calls. I like calling in the morning because it catches her off guard. She's always tongue-tied so I get to chat it up all happy and chipper and tell her I love her and she's too sleepy or irritated from morning routines to rebuff. I'm a sly dog that way! Gotta get in all the love now while I can (and while she's too far away to get me back with RADilicious behaviors.)

[1]AB's dental appliance is working quickly. He just might be one lucky boy and get it removed next Wednesday. But I'm not saying a word just in case I'm wrong. Besides, I guiltily admit, if he only wears it for two weeks, I'm going to be thinking that it was an expensive two weeks!

[2]The "pink ribbon" bag (and yes, I plan to make more because I suspect it's going to generate lots of interest.) It has a four inch flat bottom base and stands 18 inches tall. Free-hand quilted with the pink ribbon symbol. One interior pocket perfect for keys. Size is intentional to tote comforts from home that will be soothing during treatment (blanket, neck pillow, beverage, bible, hoodie, etc.)

Burning desire to lick a face off

She sulks. Grace, our lab, sulks. She cries, pouts and whines. She loves Daddy. Me? I'm just the human that serves her food and opens the door to the backyard. She tolerates me. Hope, the dog we lost last fall, was my dog. Grace? All Daddy's. Currently she is lying in the hallway outside our bedroom door, still sporting the cone of shame, her muzzle resting just inches from the door jamb of our bedroom. The light is still on. She must think Daddy is in the bathroom and will emerge any minute.

I've even seen her sulk and cry outside the bathroom door for him.

And last week when he was gone for a few days, she was such a wreck she went back to licking the granulomas on her right paw. Licked it raw. Hid her head and front paws under the bed (as if I couldn't see her enormous back end sticking out) and licked and licked. Thus the reason she's back in the cone of shame.



And sulking in the hallway.

It makes me want to get another dog just for me out of spite. A gesture to Grace that says, hey! I'm a good dog mommy, just so you know!!!

Life has taken such a different spin with Sissy's hospitalization this time. I've rested, gotten things done (and let other things slack off - you should see the kids' bedrooms!), loved on myself, laughed, cried, and processed. This November will mark the second anniversary of this blog and the two year mark from Sissy's first placement. Depending on how medicaid reviews her case this month, the grand total will be close to a year of the last 24 months that my daughter has been in a hospital environment, away from me, away from family, away from comforts of the home environment, away from the normalcy of every day childhood life, away from public venues, away from the standard classroom, away. The only thing that makes me nervous about her potential return the first full week in November is that she may have been away so long that she may never recoup that time.

I translate that to mean that any hope of a regular, healthy relationship with my eldest daughter is long past my grasp. It is the only thing that still gives me anxiety at this point.

Still, I know inherently that she needed to be away for her health and safety and for ours. It's so commonplace now that I hardly notice that to the outsider hearing of our story, it's actually jarring and sad. To me, it just is what it is. Strangers have had more influence on my child's life in the last two years than I have in the last 11. And we've only just begun. When she's discharged, there's no way of knowing if she'll fully escalate immediately and boomerang right back into the hospital environment. There's also the countdown to her 13th birthday, just 14 months from now, an age the state provides alternative resources and services because they are adolescents and not youths anymore. As much as I'd like to think that we're through this storm in our life, I know without a doubt that we've merely reached a cool-down.

In our cool-down, so much has changed. AB has grown so much that he is now four full inches taller than Sissy. I'm puzzled but not surprised that she hasn't grown at all since last year. AB has also come into his own at home, comfortably assuming the position of "oldest", working hard at school, being helpful at home and attempting to communicate his thoughts in a more meaningful and useful way. WG's reading level has jumped again, she's now at 6.0 grade level for reading. Her imagination is strong and despite her restrictions for school behaviors, she manages to keep herself fully occupied, many times taking it upon herself to do things for the family without being asked. Last night The Dad discovered she'd filled the wheel barrow with fallen sticks and branches for the purpose of burning in our fire pit.

I've been busy as a beaver. With unexpected birthday gift money and a recent package of fabric scraps from a reader (thanks Kathy!!!) I was finally able to seat and cover my dining room chairs, a project two years in the waiting. AB says, "they should be for a king or something" and WG said, "you're the bestest mom EVER!" I think my friends and family and readers are the bestest ever. I'm seated comfortably at my table because of you.

And I've not been shy in returning the favor. I just finished and shipped a wall hanging to another RAD mom.

Regrettably, I must admit that I've not been reading other blogs. It's not because I don't love the people I'm following, it's because I've had to concentrate on myself and my family the past few months. Reading other people's stories makes me emotional and stirs up my anxiety for what lies ahead when Sissy returns. Like Grace, I sulk and gaze forlornly at my daughter's empty room. But unlike my faithful black lab who will be rewarded in a few short hours when The Dad returns, I'm liable to meet a frothing, seething, violent storm when my daughter returns.

Two years is too long to be living on the edge of sanity with a challenged child. I'd like to hope Sissy's return will make my tail wag and thump and give me the burning desire to lick her face off but The Dad is the only one that will get that reward ... from Grace.

Dot Dot Dot

On Thursday, the family therapy session that was scheduled to be done by phone was bumped to Friday evening. Our plans to do a family session at the hospital on Sunday with AB and WG present (for the first time) had not been changed. By Friday evening, thirty minutes after the scheduled family phone session was to have occurred, the phone finally rang ...

yeah. dot dot dot

because that's the story of my life with mental health services.

We did the family therapy session, The Dad and I on the house phone, WG and AB running around playing, begging for food and being shushed. WG doesn't like being shushed, fyi. That is to say, she gets down right angry. Then, as we wrapped up the session the therapist says, "oh, by the way, I just found out, this is our last family session together. I will no longer be working with your family effective immediately. The hospital has hired a new unit director who begins on Monday."

I paused. Dumbfounded. We had be asked by many on our various therapy teams to do a full family session at the hospital so the staff could get a better picture of our family dynamics, which include another impaired child. We finally set up one such appointment, which requires driving 140 miles one way with AB who is NOT a happy traveler and at 6 pm on a Friday evening, less than 48 hours from said scheduled visit, the hospital changed staff. "Oh, you can still do your birthday celebration with Sissy as you planned, we just won't be having a session."

"So... staff will not be overseeing our visit, no one will be with us getting a glimpse of how our WHOLE family interacts when Sissy is added to the mix?"

"No. Sorry about that. I just found out myself just a little while ago. *slight awkward chuckle*"

*expletive expletive expletive expletive expletive expletive expletive*

No, I didn't say them out loud. I'm a good girl that way.

Sunday came and we celebrated my birthday with Sissy in a 7x12 therapy play room that was riddled with sand and broken toys. Sissy barely interacted with us with the exception of WG whose time she monopolized. She was bored while I opened presents, made an insane mess with the cupcakes but at least she sang happy birthday to me. (A first, I believe)

She also colored a folder, picture and card for me. It was clear she worked very hard and I thanked her generously. She wrote:
Happy Birthday Mommy I *heart* you very much and I wish you the best! Sincerly [sic], Sissy S.

I read the card out loud and WG said without missing a beat, "How do you even SPELL 'sincerely'?!"

I must confess, it's odd to have your daughter sign a card with "sincerely" followed by her first name, middle initial and last name. But still, it's pretty. And she HAS wished me the best. Admittedly, that's pretty standard speak for an eleven year old, complete wit Just!n Be!ber sticker on the front. lol

The drive was tedious, there is construction on the one and only interstate that takes us from our city to the metro area where Sissy's hospital is located. AB managed better than I figured and as a whole, outside of the therapy debacle (what else is new?) I'd have to report that my 37th birthday went rather nicely.

Today, we meet the new therapist via phone session.

hip

hip

hooray

dot dot dot

Worth it

I've been away from the blog for so long I had to login and then I couldn't remember my password so I had to reset it!  Geez. 

The internet hiatus was not intentional but it sure was nice to be unplugged for awhile. I've been doing lots of thinking, tinkering and quilting. And apparently lots of sleeping. When did I get so sleepy? I feel like a bear in winter and it's only just fall. Is this what happens when you creep closer to the 40 mark? I don't think I like it very much. I had so much energy in my 20s. When I think about it, it makes my head spin. Now it's a struggle to brush my teeth before I sack out at night. *tsking at self*

Life has gotten so slow and normal and lovely that I hardly remember the daily chaos of raising Sissy. With her hospital stay extended through November 8th, I feel decadent, rested, peaceful and hopeful. Spending time in the classroom volunteering has me thinking about continuing my education so I can return to the classroom. Then I think nah, that would be settling. I can reach for a higher goal than that.

In the past few weeks I've come to a very clear and resounding revelation about myself which is that were it not for my energies being completely spent on raising challenged children, always striving for the idealistic goal of "happy, healthy family," I would be accomplishing many other great things. That's not to say that parenting isn't a great thing in itself, rather that I've allowed parenting to usurp my personal identity. It's life affirming because for many years I lived with the misunderstanding of myself that my inability to accomplish my personal dreams and goals was somehow caused by an error in my character or a lack of ability, discipline and determination. Not so. I've just had my ability, discipline and determination diverted to one unilateral goal.

Which segues to the next personal revelation, if all my energies and identity are used up in attempting to raise a healthy family but I have no more control over the choices the people I love make than I did ten years ago, then it is futile to continue. That doesn't mean I'm giving up, it means I'm diverting. I've had the flood gates open at full to flood one narrow tributary for so long that my lake is bone dry. I'm effectively closing those flood gates emotionally and mentally, leaving them open just enough to keep the tributary of my family full, not flooded. I'm going to let my lake refill and then I'm going to use the power and force of the reserves to turn the turbines of the dam and generate power to benefit everyone whose life I touch.

So as I wait for Sissy's eventual return and our families inevitable return to daily chaos and trauma, I will be refilling my lake one drop of water at a time. I'm taking back my life, my energy, my dreams, my goals, my resolve because (and this is the third personal revelation):

I'm worth the effort
Worth the sacrifice
Worth the price.

I'm worth it.

Truths I never accepted about myself, truths that I now cling to steadfastly. Go ahead, try to take this power from me. I'll drop to the floor in the best knock-down drag-out RAD ragefest this side of the prime meridian. It won't be pretty.

Anyone for Tennis? Wouldn't that be nice?

This song popped into my head this morning.  Just *POP* and I was singing:

 

when you're there I sleep lengthwise and when you're gone I sleep diagonal in my bed

Then of course I got snooping around on you.tube because I had thought the song was by Cream. 
[aside] did you know Clapton got his start as a member of Cream?  Searching hopelessly for "Lengthwise" amongst the Cream music, I stumbled on all my old favorites like this one:

or this one:

or this one:

Ah heck, who am I kidding.  This one is the best:

So I listened fruitlessly but with delight, remembering my college days and my introduction to so much amazing music and how fun and carefree those times.  Following my stream of consciousness, I chuckled at myself because mostly, I only like British artists, still do. And how AB likes it too, loves Cold.play.  Then I recalled that the new Cold.play CD is coming out and I want it for my birthday but I'll have to burn a copy for AB and *OH YEAH!* It occurred to me that one of the girls in my college dorm had introduced me to Cream, dubbed a cassette for me so I left the laptop, still playing "White Room" to go rifling through my old cassettes.  They've been picked over because AB is enthralled with that archaic form of entertainment and dagnabbit, what has that boy done with my Cream tape?! So I dashed off to his room to rifle through his hoarded stash, tsking that he has "adopted" so much of my old music, now happily and lovingly showcased on his bedstand bookshelf.  And there was my Cream tape, right next to my XY Cold.play CD the little terd, I wondered where that was! I yanked the Cream tape and read through the list of songs, sure I'd find "Lengthwise" because that dorm college pal had put it on that tape and VOILA! it was at the end and ... it was labeled as PHISH *bells ringing in my head/lightbulb flashes* Oh yeah, I forgot about that!

I returned to the laptop and you.tube, hit search PHISH - lengthwise and ... bliss (FYI - NOT a UK band)

I love music.  The Dad walked in to the den as I began typing this post.  "What do you want for your birthday?" 

I smiled.  That question is easy.  "The new Cold.play CD but I think it comes out the week after my birthday so I'll have to wait."  And I'll need a blank CD to burn a copy for AB

Heck, since this is a stream of consciousness post, I might as well continue.  My birthday is next Sunday and I have volunteered to sacrifice my special day by doing a family session at the hospital followed by a birthday celebration in one of the therapy rooms.  Bringing AB and WG and having ice cream cake (no gluten).  It should be a rousing good time.  NOT.  Which is the point.  I want the hospital to see Sissy's behaviors, the behaviors WE see, in all of our quasi family glory complete with a road-weary stimming AB and a happy, excited, energetic WG all while we celebrate MOM.

Me thinks it's time to switch to something a little harder:

Black Sabbath - Paranoid

Incidentally, Black Sabbath is another UK group and they are releasing a new album soon as well.  But it's not all weird, psychedelic or hardcore. I'll leave you with this one:  arguably the most beautiful lullaby ever, (and yes, I played it for my kids when they were babies, how could I not?)

Black Sabbath - Fluff