love isn't enough except when it is

"Mom, it's 7:00.  We need to get up."  WG was standing beside my bed, waking me up. Which, given that moms are usually waking up the kids on school mornings, is hysterical.  Despite my efforts to move my cell phone to the dresser so that when the alarm goes off I'm forced to get out of bed, I still manage to smack it in a half-asleep state and roll back under the covers.  WG knows I do this.  She wakes up when she hears it go off at 6:50, then waits until 7 to get me.

Then there are the days when I'm awake and ready to go and I get to wake her.  She sleeps all over her twin size bed in some of the strangest positions.  More like contortions.  Monday morning I went in and she was wrapped up like a sarcophagus.  Only her head was sticking out.  I stifled a laugh and stood over her bed.  Just stood there and waited.  Thinking should I snap a photo and post it on the blog?  Cause this is priceless. But just as I was about to turn and grab the camera, her eyes blinked open and she smiled.  Yeah, that was definitely better than posting the photo on here.

AB is still generally a brute in the morning.  I wake him up by asking him what he wants for breakfast.  It has proven to be the best approach - appeal to the man's stomach.  Most times he grunts at me and it takes at least until 7:20 for him to roll out of bed, usually after I've threatened to squirt him with the water bottle.

On the days he wakes me up it goes like this:
*bump bump bump* to the side of the bed with his knees.
"mom. mom. mom." in tandem with the bumping.  Then as soon as my eyes open he rushes out, "whatarewedoingit'sseven?!MOM!"

He's funny that way.  Routines are gospel.  Forget the Bible or the Book of Mormon.  Routines.  That's the golden rule.  AB is prepared to stand on that word.  Mess up routine and he gets wickety wackety loo loo.  Like today, I opted to get dressed before making their lunches.  This is not my usual routine.  He followed me to my bedroom, me quickly putting on a shirt so he doesn't see me half-dressed.  "Mompleasemakemylunchbeforewegotoschool."

I snickered. "Oh, OK son.  Don't worry, I didn't forget."

"But you are getting dressed."

"Yes."

"I didn't want you to forget."

I snickered again.  "I haven't forgotten."

"OK. Just make it." and he walked out of the room like a robot. Did I mention that this entire exchange occurred without him making eye contact? He talked to the curtained window, his arms stiffly at his side. I love my son.

I had that same thought yesterday when we were at the dentist. After a rousing fiasco more than a year ago in which I got punched and kicked, the staff has been oh so obliging to always accommodate AB with the one single patient room they have. It's like getting VIP service. The dentist came in and remarked to the dental student that was frustrated that she couldn't fit AB's mouth with the right size brackets, "he's come a long way!" And we both laughed remembering the assault and battery I endured. The dental student just stood there wide-eyed all while AB laid in the chair, not moving, not flinching, just staring at the TV that was playing The Incredibles. In that moment, I looked at my son the same way I looked at WG on Monday morning - with warmness and love. Sometimes it hits me how lucky I am.

I even had a moment like that with Sissy last Saturday, despite the commotion she created. One of the techniques the staff wants us to try is to rub her back when she's agitated. No words, just rubbing. So after she was done screaming and shouting all kinds of insane crap, I went in, sat on her bed and just rubbed. She wanted to talk and chat and be all fast, fast, fast and I said, "No talk. Rubbing only." She laid down on her tummy, her left arm dangling off the side of the bed, the big box fan on high. I turned it to blow straight on her face, gently whisking her hair off her cheek. She closed her eyes and let her body go limp. We sat like that for ten minutes, saying nothing while I rubbed. And I was struck with that same warm glow of love. With her hair away from her face and only her profile visible to me, I caught a brief glimpse of the baby girl she used to be and my heart melted. How? How do we get back to that? I wondered. How did we come so far away from that love? With sorrow I remembered that actually, there never was a time in which Sissy was just a pleasant, happy baby. It was only when she slept, and presuming she didn't have night terrors, that I caught glimpses of peace on her face and in her body. Such a beautiful girl, such a troubled soul. so very little I can do beyond loving her.

Sometimes love just isn't enough and for a mom, that hurts to accept. No matter how hard I try, I will never succeed in conquering the evils of this world with just my love so my children are not hurt or so they won't struggle. That's an unrealistic expectation anyway.

Twitching = Not Cool

Finally getting good reports and good grades out of AB and WG. Sending Sissy off the the hospital the day after their first day of school really put a monkey wrench in their transition. WG is now at a 5.6 reading level. Wow. WOW WOW. She is LOVING the addition of jazz to her dance class and is very excited about the accelerated student class she attends once a week. My backyard, living room and garage are filled with science experiments of sorts. That's what she calls them anyway.

Poor AB is still at 3.4 reading level. We don't tell him his kid sister is a stronger reader. However, to his credit, he has been pulling double time in his social studies and science grades. He got 100 on his cell project and an 80 on his last social studies test. What's more, he was very adamant about reading and studying for Friday's unit test. That's huge. My son telling ME he needs to study? Who is that kid? Not MY son! For him the motivation is strong. We revoked all "violent" programming until he had passing grades in everything. For AB, watching Godzi11a or netfl!x tv episodes about prehistoric creatures is violent. His teachers have been complaining that his free writing assignments have been very graphic. So we thought to kill two birds with one stone. Pretty savvy, eh?

I'm loving being back in the classroom... as a helper. Being responsible for lesson plans, progress monitoring, grades, answering to administration, meetings and all of that? Not so much. As in, no. But helping the first grade slow readers is a blast and I really enjoy the teacher I'm helping. We "get each other". We both run a classroom the same way so many times I've been a self-starter in helping her because I know what she's aiming for. She really appreciates the help because some of the students have some behavior concerns. Still don't know if I'm up for going back for more education for myself to get certified for public educating (I was private sector all those years). Thinking about it. But only thinking. Right now, I'm enjoying the instant rewards of helping little ones learn /ch/ and /tch/ sounds.

AB got fitted for his dental appliance today. $900 smackers on the dental card. Time to start quilting to earn the money to pay that bill.

Next week Medicaid reviews Sissy's case for approval of more time or discharge. I'm doing everything in the world that I can do to NOT think about it. I'm not being very successful. I'm twitching. A lot.

Twitching = not cool.

Mom, I don't have my Pajamas

Most of my readers agreed that Sissy's rage that cut short her overnight therapeutic leave was not a fail but most likely a win. the general consensus is that her behavior will show medicaid that she does indeed need more time in the hospital before she transitions home.

I wish I could be as optimistic. Yes, the chances of approval for another 30 days of residential are improved, but by how much? I can't say. So, as ever, our life hangs in limbo as the rest of us await our fate. I understand that sounds selfish, but at this point, that's how it feels.

The supervisor at the hospital told me to do everything I could to get her to calm down so I could transport her back safely. I followed all of their therapeutic suggestions from ignoring her screaming, providing a white noise, rubbing her back once she was safe to offering her a bubble bath to soothe her nerves. Although she did settle down it was clear she was going to have her feathers easily ruffled at the slightest infraction of perceived injustice.

I explained to her that I would be returning her to the hospital that evening and she just blandly replied, "OK." Followed quickly by, "I want to take the lyrics to my music CDs back with me." I sent her off for a bath leaving her packed back of clean clothes in the bathroom. She shouted at me through the closed door, "Oh mom, I forgot to tell you! I didn't pack any pajamas!"

I paused before replying. Seriously? I thought. This child knew she was doing an overnight, knew all of her pajamas were at the hospital with her and she didn't pack any? Any ordinary parent would think their child had just been careless and forgotten. But with my daughter, I don't know what's intentional, what's manipulation, what's "normal" and what is her mental challenge. It just stops me cold and stymies me. I responded the only way I knew how, speaking back through the closed door, "Um. Remember? I'm taking you back."

"Oh, right." was all she replied.

After finishing her bath she noticed her basket of unused, mostly never opened, toiletries in the bathroom. "oh, I forgot I had this stuff." Then glancing at me to gauge my reaction said, "all of my stuff got stolen. i don't know why people keep taking my things. They just go into my toiletry bin and take it all."

I didn't flinch. I simply said, "Well, there's three things of deodorant, two of mouth wash, a face wash, hand soap, hand sanitizer, hair bands and head bands ... it's yours. Take it if you want to."

"oh, no. It'll just get stolen again."

Opting to push the envelope just a little I offered, "So, you have no deodorant because yours was stolen and here are three more. You don't want to take any?"

"Oh," she hedged, "well, *hee hee*, actually, i forgot, I have one more at the hospital."

I just straight faced said, "well, whatever. Take them or don't." She grabbed the hand sanitizer and shoved it in her bag.

The drive to the hospital was in silence. She watched a movie and complained that the screen was jumpy and bouncing around from the jostling of the van on the road surface. I suggested she put the screen in her lap.

Twenty miles out she said to no one in particular, "*sigh* I wish I could have stayed overnight." I said nothing.

Ten miles out she said, "mom, what's self-mutilation?"

Really, this kid can try a woman's patience.

The staff was waiting for me when I pulled up, I filled out a survey in which I made sure the hospital knew that they had also screwed up her medication. Had I not been on my toes, I would have double dosed her lamictal because the nurse put it in the lithium bottle. And where was the lithium you ask? Not provided.

Yesterday when I returned home, making sure to take my time so I didn't have another panic attack, WG tackled me at the door with an enormous hug. All I could think of was my quilt project waiting for me in the garage so I went straight to it, AB close behind begging to learn. So I taught him.

Not bad for someone that has never used a machine or ironed before!

And now I will finish my coffee and call the family therapist at the hospital to debrief her. That should be fun.

colossal fail

The Dad left at 7:30 a.m. to head to the hospital to do a family session and bring Sissy home for an overnight therapeutic leave.  By 1:00 p.m. on the trip home, Sissy was raging, self-harming, screaming, using threatening language, it was a mess.  He called from the cell phone and I could barely hear him over her screaming.  I called the hospital and our CBAY team.  He made it home (god only knows how) and I'd already ushered WG and AB to their rooms with doors locked.  I met him in the front of the house and after forcibly removing her from the vehicle, got her to her room where she screamed for another thirty minutes.  I've kept her within arms reach, she's bathed, I gave her a DIY haircut, we're repacking her bags with some seasonally appropriate clothing and getting back in the van within thirty minutes.  I have to have her back at the lobby no later than 8 pm or I'll have to call the after hours number to admit her back in.  Hey, it's better than police and an ambulance escort back to the hospital, that is, assuming she's deescalated enough to make the 2.25 hour trip back with me.

If stories could end up on fail blog dot com then I'd be entering this post.

Presents - squee!

After writing about the "in town machine" being at the shop for general maintenance, a reader commented that she had a brand new, unused, still in the box machine. Three days later it was at my doorstep.

I didn't waste time trying it out!

Log Cabin September Quilt wall hanging
made completely on my new baby!

My IRL friend is always sending me treats.  She knows I can't get Phillies stuff in my neck of the woods so she keeps me amply supplied. 

This gem is specifically for my new "den".

And since I'm posting pictures, here's some of WG.  Her dance company performed the tap recital number at the local Arts in the Heart event.

WG likes green and cars. 
She was about to bust open when she saw this one!

Limitations

The Dad was playing baseball on Wii Sports. AB has been pretty keen on it too. So for the past several days it's been a lot of "foul ball!", "strike!" and "home run!" coming from the TV while I've bounced around doing dishes, laundry, homework help, quilting, etc. I was struck by a memory of a different me, a young, naive version of my former self. Having grown up as one of five girls, I had declared I wanted to raise only sons, and a house of them at that. Actually, my specific words were, "a baseball team."

Clearly, no one can predict the outcomes of life. Sure, I could have opted to adopt nine sons but even that is unrealistic. At the time, I knew I was being ridiculous but the message I was trying to convey wasn't so much about having nine boys that played baseball but that I wanted something different than my childhood had provided. A house full of boys certainly would have been different than a house full of girls.

What I didn't account for was infertility, the unpredictability of adoption and most of all, my own limitations.

When we are young, we don't perceive personal limitations. The very essence of parenting imposes a "be all you can be" approach to spur our children toward their own personal excellence. It might be wise to point out to a child his or her potential challenges and pitfalls but by the time they are teenagers, they aren't going to hear it, it will only push them further toward those pitfalls as an act of defiance. After that, as a parent, the best choice is to let life be the teacher. Experience, it seems, trumps nature AND nurture alike.

Thus, those of us who are able to stand on our feet and toddle away from our homes and families at the fearless age of 18 are quick to learn that life is more like a game of "whack-a-mole" while attempting to sprint over hurdles than it is a straight path toward success, happiness, wealth, reputation and fame. Few recognize their full potential, most resolve to accomplish what they can to keep the bills paid and not die prematurely. Only a hand full of wise ones who have borne the stripes and scars of hard knocks and gotten up to endure them again learn that the best approach is to accept their own limitations and to navigate life in full understanding of themselves.

There in lies the rub. Coming to a full understanding of oneself often takes a lifetime. How then should we proceed?

At present, I like to consider myself as one of the wise ones. I reflect and evaluate, process and ponder. I'm long on thinking on researching and quick on deciding once I've come to a reasonable conclusion. Then I'm bullheaded and won't budge until it's time to reflect, evaluate, process and ponder again. Currently, I've realized that though I wish I could be one of those women that manages a house full of children with challenges it can never be for me. I don't have the stuffing for it. I am broken, defeated, beaten down and discouraged. Parenting has all but laid me bare. I am limited in that regard and it makes me angry but mostly, it makes me sad.

If I choose not to accept this limitation about myself, that I never was nor ever will be the type of woman that could raise a baseball team's worth of children, let alone boys, then I choose to fail. So I accept what I am made of, both the good and the bad and I find that I am capable of accomplishing great things after all. I merely need to modify my goals, however reluctant and grievous it makes me to do so. My mission? Success no matter what the cost. Today it costs me the truth that I am really only capable of raising two children.

I have three.

I try to console myself be remembering that of my three charges, two are challenged which would limit any woman. But... not so. I know lots of women that take it on times three (or more) and they don't seem to struggle the way I do. It hurts me to accept this about myself.

Today is Wednesday. In a little more than an hour I'll be volunteering in the resource room at the kids' school. Tomorrow is a full day, working an a big job then leading WG's Brownie troop in earning a try-it badge. Friday morning is a therapy appointment followed by volunteering in the afternoon and riding in the evening. There's no time to catch my breath before Saturday when Sissy comes home for an overnight TL. I'm terrified. Can't sleep, anxious, nauseated, bowel problems, tense, headachey, melancholy, fidgety, short-tempered, worried, scared ...

Adding Sissy back into the equation is where the rubber meets the road for me and where I race straight into the brick wall of my limitations. There's nothing more terrifying than knowing you're about to endure a head-on collision. Such is the price I pay for learning and accepting my own limitations. I just don't see it happening any other way.

Horses don't hurt but Mental health does

We turned off the main road and began the mile or so drive on the winding dirt road toward the open field. "Mom. It's getting dirty." The tires had kicked up a plume of dry red dirt, billowing behind us as we jostled over the hard-packed surface, gravel crunching loudly beneath the weight off the vehicle.

"Yes son, that happens when you go down a dirt road."

"But mom, the van needs to get washed now."

"Yep."

We parked the van and got out, the sun beginning to sink in the west while the cattle in the field on the other side of the road lowed and inquired about the new people and horses. The horses whinnied back in response. "Hey, who's over there?" Asked the cows. "We are!" said the horses. seriously, that's what is sounds like.

"Mom. Mom." AB was talking into the wind, away from me. Despite the cuing his OT has taught him for conversation starters, he is reluctant to catch on. "Mom." He continued. "Will I be riding forever?"

We were getting our bearings, finally at the new site, Rock Creek Farm, more than a year in the making. He was excited as was everyone else, horses included. "AB," I replied. "Don't you like riding?"

"Yes."

"So...is it OK if you ride forever?"

"Yeah. I just wanted to know."

"Well, if you want to ride forever, you can."

"So then can I keep it?"

"Keep what?" AB's cryptic conversations are the norm so I just roll with it.

"This."

"What is this?" He has trouble producing nouns on command.

"My ... wait, what's it called again?"

"Show me." He pointed to his riding helmet. "Your helmet."

"Oh, yeah. So can I keep it? Like forever?"

Stumped, I answered with a question, "If you want to?"

"OK. Good. You know, for memories."

I laughed. He groaned at my laugh then I handed him the reigns. "Walk your horse to the ring, son."

"Wait, what?"

"The fenced area. Take Sterling to the fenced area so you can mount."

"Oh."

Every Friday night is riding. At one time AB had formal hippotherapy at a different farm. He rode in a Western saddle and was guided through a maze of obstacles all while having to do claps in a rhythm, catching a ball, etc. There's a place for that type of guided therapy but for AB, I felt like it usurped his autonomy. In addition, the proprietor of that farm was reluctant to have parent involvement, seeking to have absolute control of the therapy session. We switched farms where it is an unspoken rule that we come as we are, everyone is welcome, anyone can help out (which is greatly appreciated) and it's a rousing good time for all. AB rides English and is in control of the horse he is riding. He jumps low cross ties, trots and if I say so myself, has a decent post in the saddle when he tries hard and is anxious to learn to canter. According to AB, "that's easy." But of course, he hasn't had the chance to find out yet.

Then after riding, we put up tack, sponge off horses if it's hot or blanket them when it's cold, let them out to pasture and head home. I can't think of a better way to spend a Friday evening. For me, I've learned that the open air of the farm, the gentle nature of the horses and the camaraderie of the parents and riders is a perfect balm for my anxiety. I find myself daydreaming of ways I can get out to the farm more often than once a week, even if it means picking up horse piles and gleaning for rocks in the field. I'm with AB, I hope we do this forever.

Sissy, of course, doesn't usually come. Typically, she will already have had a snooty attitude and lost the privilege but in general, I can't trust that she won't fly into a rage and horses bearing riders are not keen on raging spectators. In other words, I've unofficially decided that unless she's having an unusually good day, she's not welcome. Of course, knowing that I have a Sissy-free zone helps to settle my nerves. But mostly, it's the horses. I just love being with them. They're nothing more than tall dogs, each with their own personalities, quirks, attitudes and favorite people.

It's been busy the past few weeks. Yesterday The Dad remarked that he was sad that we haven't taken full advantage of our Sissy-free time by doing family activities we couldn't otherwise do if she was home. I agreed but mostly I'm just glad for the peace and ease of life. Sure, WG has had her moments lately, taking the opportunity to vent her pent up anger and in true seven year old fashion, has been a royal pest. And AB has had his own moments including a rage on the way home from school on Thursday, complete with kicking the dashboard and tossing his book bag into the front yard. Nothing that a v!sataril and a nap couldn't cure. I've volunteering in the school now, three days a week in the resource room, working with sluggish first grade readers. I'm trying to determine if I'm officially done with being in the classroom or if the teacher flame in me hasn't gone out altogether. I'm thinking, naively, that life is peaceful again and I can begin to think about a career, possibly furthering my education, etc.

Then I make a weekday trip to do a face-to-face therapy session with Sissy at the hospital and I am reminded like a slap in the face with a cold cod fish that this peace isn't forever. After yet one more panic attack on the drive home this week, I've made the decision to never make the hospital trek alone again. The journey home is too isolating and there's not another person to talk to so I can decompress and process my feelings about Sissy and her reluctance to alter her behavior.

Currently, she is not meeting the criteria for placement but medicaid has approved her hospitalization through the first full week of October. After so many hospitalizations and with the limited resources available in our community to assist with her mental health challenges, medicaid thought it beneficial to grant us a little more time to get our ducks in a row. Which of course, is a joke because there aren't any ducks to get in a row. In fact, there's no such thing as water fowl at all when it comes to Sissy and managing her challenges. She still rages there, still refuses to take responsibility for her actions, still won't accept that she has an unhealthy attachment to us, still blames everyone and anything for her present situation and is no different now than she was the first week of August when she entered the hospital. There is no win, there is no hope, there are no ducks to line up. Sissy will come home and hell will return with her.

In a last ditch effort to stir up PRTF level behaviors, next weekend we are doing an overnight TL (therapeutic leave). The objective is to get her home and demonstrate that in the home environment she returns to her dangerous ideations, return her to the hospital and let the staff treat her emotional breakdown. Ideally, they'll have something to chart which will let medicaid know that she does meet medical necessity. In other words, it's all a game. Long gone are the days when healthcare was interested in the well being of the patient. It's all about dollars.

And don't even bother to mention the fact that my mental health is faltering under the weight of this burden. Or that the family isn't functional when Sissy is here but we're a close-kint unit when she's absent. I've gotten a rehearsed response from many different professionals in many different positions in the mental health community. "My mental health has no bearing on the decisions that are made regarding Sissy's mental health." In other words, if I end up in the psych ward because Sissy's challenges are so overwhelming that I lose my stuffing, it's MY problem. Put up or shut up.

It's like playing poker with the dealer using a marked deck in favor of the house.

Until I can learn the marks on the dealer's cards so I can beat the house, I'll be at the farm, spending time with horses that don't reduce me to a panic attack in ten seconds flat. Unfortunately, I fear that the only way I'll beat the house is if someone gets hurt.

Life has a mind of its own

The machine is at the shop. No, there's nothing wrong with it, it just needed to be serviced after so much use. It's not my machine, it belongs to the kids' grandma (Noni). We're calling it the "in town" machine as Noni lives 45 minutes away and comes into town on Thursdays for bible study and quilting. It's so nice to have such a beautiful machine to work with. The Brother machine The Dad gave me as an engagement gift 16 years ago is a simple machine that can't be calibrated for the precision sewing required in quilting. One day I'll have the money to buy something of my own that is nicer but for now, babysitting the "in town" quilter is perfect.

I've got a few quilts in the que, two Orlando moms have requested I Spy quilts like the one I made for the auction. If you haven't followed up on the status, the auction raised more than $3000, enough for 17 moms to get scholarships. That's amazing. So hats off and many, many thank you's to my readers that supported the cause by either bidding or donating fabric or resources so I could make the quilts. In total, the quilts I made generated $130.

I will be changing gears to generate some personal cash with the quilts. AB's dentist has prescribed an appliance for his mouth to correct an under bite. Medicaid deems the procedure as elective so we're stuck with the $900 bill. We don't consider it an option. If AB's jaw continues to form improperly through puberty, not only will it impede his speech, correcting the error after he is done growing is a painful, long process that begins with breaking his upper jaw. Clearly, the simple appliance in his 10 year old mouth today is worth the preventative cost. More information to come but I'm not opposed to making a made-to-order quilt if you are interested. Just email me using the link on my profile page.

I've also considered compiling my poetry into a book and pursuing a vanity publishing. I'm not sure of the initial cost or if I'll recoup the outlay in addition to making a profit from the sale but it's an idea rumbling in my brain.

I saw Sissy last Thursday, enduring one more meeting to staff her case. The hospital has done precious little and has just barely begun to address the "wish list" I had for her at intake. Of course, my wish list isn't the same as a Christmas list. I have asked that the hospital take advantage of the resources available in the metro area, mental health resources that are not an option here. In other words, I'm asking them to do for her that which we are unable to accomplish at home. Which is the point of hospitalization, right? Apparently not. She's only had two individual therapy sessions. TWO?!? And my one-on-one time with Sissy was spent with her spinning one yarn after another. I don't think she said anything that was true.

So, on the drive home, 60 miles in, I had to pull off at a truck stop because I was in a full blown panic attack. *sigh* It is so frustrating. All of it is. My health, her health, our family, the state of health care, our state's inability to adequately support our daughter, this double-jeopardy position we're in, all of it. Thankfully it was a Thursday, the day Noni is in town so she talked me out of the crazy tree and I made it home safely. Then I spent the weekend taking slow deep breaths after the hospital called me back on Friday to say that medicaid approved another 30 days of hospitalization.

I forget, as I live this life, that it really IS overwhelming, that I'm allowed to be stressed out. I have reasonable cause to be anxious, it's not contrived or exacerbated by my own mental incapacity. Rather, I suffer these bouts of torment because of our situation. I would be free of it altogether were our life less messy. Currently I'm actively working on giving myself permission to be tired, anxious, angry, stressed and grieved. It's hard to do, oddly enough. I've been in self-last-at-all-cost mode for so long that it takes a concerted effort to put myself first. It takes even more effort to avert life's attempts to redirect me on the self-deprecating course. Feels like I'm paddling up stream nearly every day.

I called Sissy last night and addressed her lies. The phone call was cut off by staff that intervened after Sissy began screaming into the phone. I got an odd satisfaction in knowing that I had the opportunity to call her out on her behavior without having to deal with the aftermath. I called back an hour later and she claimed that the staff hung up the phone because someone ELSE on the unit was in crisis. I tried to redirect her to the truth about her own behaviors in our previous conversation but she wouldn't own it. Then I told her she was staying another 30 days at least and she bemoaned that she would be missing Thanksgiving.

And that's where I get stuck. I think she truly doesn't have a concept of the time frame so I feel bad that she is too challenged to understand such things even after I explained to her that 30 days from now is the beginning of October and Thanksgiving isn't until the end of November. But I know unequivocally that she is a master of manipulation and she played me for a fool last Thursday when I was there. Relating with her is like sitting on an off-kilter see-saw. No amount of juggling the weight and positions will make the plank stable. Every time I bend my heart toward her, I get burned. It's too easy for her to hurt the ones she loves because she's learned by experience that no matter what she does, we'll keep loving her. So I concluded our conversation by telling her that the choice is up to her. She can choose to learn a new way of dealing with stressors or she can continue to live her days at a hospital but she can't keep hurting and trying the trust of the people that love her.

Then I breathe slow deep breaths, I close my eyes and listen to the sounds around me, I collect myself once more and I quilt or read "Charlotte's Web" to WG or help AB with his cell model science project or watch a Netfl!x movie with The Dad or put an E-collar on Grace the dog so she won't chew her paws. I take a soothing shower and snuggle under a blanket with coffee in hand. I say hello to friends on faceb@ok or wash a few windows, blog or volunteer in the resource room at the kids' school. I just keep on keeping on because there is nothing else I can do. Life, it seems, has a mind of its own.

Just Breathe

Original poetry by author of this blog. Copyright laws apply

JUST BREATHE
Bits.
A synapse of the neural net,
Capturing a moment and recording it
For no one to see
None to know.
It is a piece of the puzzle
That remains locked away
In the mind of only one
Until it is revealed.

Risk.
Share the fragments of the mind.
Unwanted, cast off, ignored
For all to see
All to know.
The pieces of the puzzle
Shown like a child reveals
A pill bug in her hand.

Wretched.
The hands of time turn
Though time will never move.
Space is the vastest piece
Of this puzzle to riddle through.
It is known by all
Yet never seen.
Electric charge of a thunderhead
Zapping ions to and fro,
An exchange that changes nothing.

Stand.
The wind blows past my face
Shut my eyes and listen.
A warm embrace that cools,
Peace settles on the surface of my skin.
I squeeze my eyes that it might linger
The gentle caress lasts just one moment
Never long enough
To satisfy my thirst
For hope.

Sleep.
Close the eyes, shut out the noise.
Eyes hear, ears feel, body sees.
Racing synapses chase bits
Sorting pieces, fragments of a day
Lightning fires electrical impulses
In the subconscious.
Oh fiendish fire that burns
Without heat, oxygen or fuel.
Dreams are endless puzzles.
Chase them.
Chase forever.

Dream.
Dead, a willow's branches
Stretch toward the stormy sky.
Stop. Breathe in the moment.
Drink the lifeless energy from the
Images of decaying fibers.
Puzzle this piece,
This tree yet lives;
Lightning strikes the core.
That the master may carve out beauty
In the brokenness.

Life.
An ascending stairway of love
Lighting a path toward the sky.
I take the first step
Followed by another.
Beckoned upward by hope,
Lights guide my way
Love blows across my face
On stormy winds of desperation.
I see all
None see me.
Silent voices speak pieces of the puzzle.

Capture.
A still image
Of children laughing,
gaiety rings in the air.
No one is there.
It can not be.
It is a dream of peace
I stand upon, begging life
To dream up a bit of risk for me.

Breathe.
The air escapes my lungs
With no path for return.
Lights fade out.
The synapses in the neural net
Cease their lightning ions
Skipping from hemisphere to hemisphere.
The eyes no longer hear,
The ears stop feeling,
The body can not see.

Piece of peace find me
That I might breathe through this pain;
That the precious bits I capture
Might be shared,
That all might know
And all may see
This puzzle inside of me.
A chastising peace that escapes
Unless I stand or dream or risk
To record the bits of life I breathe
On lightning synapses of ions
Dancing music in my mind:
Love is the only message
I want to carry home.

Don't urinate on the local vermin

I'm in my new den. Yep. You read that correctly. I can't afford to pay out of pocket costs for my children's health care but I could afford to put an addition on my house.

Currently, my den has a concrete floor and a ten by eight opening that is only partially shut off from the elements by a folding door which is automatically closed by an electronic spring and pulley system. It's serious high tech stuff, let me tell you. The large opening cuts costs by eliminating the need to install windows for ventilation, although the pestilence issue is problematic and only moderately abated with amply applied bug spray. But the view is pretty. I get to look at the bug splattered grill of my van.

The furniture is sparse. I have two folding camp chairs, a beat-up coffee table and an even more worn end table, a DIY corner cabinet system, a cast-off dinette table and mismatched dining chair, a DIY quilt table on caster wheels and a pressed board shelf unit circa 1992. The only new item is the 70% off 4x6 carpet remnant I found in the clearance bin at the dollar store.

Unfortunately, regardless of the addition of roughly 300 square feet of living space, the appraiser says it can not be counted toward the overall value and liveable space of our home based on some ridiculous county stipulation regarding what can legitimately be deemed as "liveable space". Likewise, I must share the space with ladders, a leaf blower, tools, christmas boxes, utility brooms, a hot water heater, spiders, roaches, an unused upright freezer, coolers, beach and fishing gear, hoses, and the various brick a brack one typically finds in a garage.

Oh, wait. That's right. That's because it IS my garage! For the price of hard labor, sweat and sore muscles, we have increased our useable space.

I love it.

Especially since we are enjoying the rare treat of a cool September evening two days in a row although I do miss the hum of the locusts. The hummingbirds are fun to watch and I'm always curious to see if one will fly in. Those little guys are practically tame. They never frighten away and they are always staring me down if I leave the feeder unattended for too long. Have you been stared down by a hummingbird before? It's a bit intimidating. Hovering mid air, a foot from my nose, their long pointed beaks threatening harm, their wings moving so fast they are invisible, that ruby red throat ... *shudders* I feel like Igor: yes master, the nectar, the nectar! Coming, coming sir!" Too many more cool nights and my little humming buddies will be gone too. Then I'll be fighting an endless war with the leaves wanting to blow into my den. And does anyone have any ideas for racoons? We have a family of them living in the sewer drain just one house down.

Have I mentioned that fall is my favorite season?

And since I'm rambling, have I mentioned that I'm drinking coffee too late in the evening? I'm trying to decompress. I have to do the round-trip therapy visit with Sissy tomorrow which will include yet one more meeting to staff her case. *sigh* One of these days I'm going to get the chutzpah to show up wearing a t-shirt that says, "My kid is challenged. I'm over it." and then just sit there smugly with my arms crossed and my legs propped up on the table, leaning back in the chair trying not to nod off or better yet, checking the time on my cell phone too often so I appear bored or uninterested. Oh, I know!  I should download a new game on the cell and play it during the meeting, looking up only occasionally to say, "what? Huh? I don't know." since that's all Sissy ever says at these meetings. Shoot. One time she put her forehead down on the table letting the rest of her body go limp, her tongue hanging out of her mouth and her eyes rolled to the back of her head. Good times. Good times.

And no. She wasn't having a seizure. She was bored. Six adults and a parent convening from as far as three hours away to spend two hours discussing her mental health services and her future and she was bored.

Really wish I was making that up.

Ah well, this is my life. What's a girl gonna do? I'll tell ya what she's gonna do. She's gonna live it up in her new den! New Q&A at my house will go like this:

"Where's mom?"

"In the den"

"Huh?"

"She's in the garage."

"oh, right."

Is it bad if I crack myself up? I mean, I know stand up comedians aren't supposed to laugh at their own jokes but I'm not standing up (that's hard to do and type on a laptop at the same time) and I can't hack the night life, it's too loud and rowdy. After all, I get spooked by hungry hummingbirds. So a gig as a comedian wouldn't work out for me. I guess it's OK if I'm laughing at myself then?

Anyway, come over. Sit with me in my den and keep me company. I've got a five gallon bucket you can pee in if you can't make it to the other end of the house in time. Or you could just walk out the big opening and squat at a tree, just make sure you look twice before you drop your drawers. We've got some interesting vermin in these parts, the kind you would be keen to be wary of, particularly if your aim is to urinate on them.

WG lost her second top tooth.  She was very excited.

Daytime in the "Den"

Lunch anyone?
red beans and rice

Busy, busy

New kitchen curtains I made and the view of the hummingbird feeder

Ah yes, the lighting is much better to see the curtains in this photo...

New curtain for the kids' bathroom window

(I made the old one ... *cough* ... 14 years ago)

Nighttime in the den 

AKA: the view as I typed this post. See?  There's the van's grill, just as I said.

There's my roost, laptop, coffee, trail mix and all.

I'm a happy camper!

White flag of surrender? Never.

The picture of health. She was just that. My first time seeing her in four weeks since her placement and my daughter was the picture of health. That is to say, she was well groomed, dressed nicely with no food stains on the front of her shirt and the colors matched. Her hair was tidy, her face and hands were washed and her eyes were bright. How can she look so healthy, show no signs of psychoses and be bright-eyed when she is so very ill at home? It boggles my mind.

Likewise, the rest of us, without her, are also very healthy. We're laughing, being silly, playing, doing our own things without needing the other to assist all day long. We're enjoying meals at the table and silence at bedtime. We're sleeping peacefully and waking up ready to go. There are no glitches, no hiccups, no problems to solve, nothing.

We spent yesterday on a road trip to the beach and back. AB managed well, but required a v.staril for the road trip home. WG ran and laughed and played and never once looked over her shoulder for impending trouble. All of us care free and relaxed. I found a few shells to bring to Sissy this week when I visit again. It's just impossible for me to forget her, even when I'm astounded and giddy that we are functioning so well in her absence.

Though sometimes I do forget about her. I get caught up in the ease and gaiety of everyday life without the incessant rages and crises we endure endlessly while Sissy is home. Quite literally, I have SO much time on my hands. I shake my head in consternation that Sissy's issues steal so much time, among so many other things.

I'm mentally caught in a rock and a hard place. With Sissy as an active member of our family, we can't function. With her out of the picture, we can. But keeping her out of the picture isn't realistic. My energies are spent contemplating what middle-of-the-road possibility there might be; what would that look like and what compromises and out-of-the-box thinking will we have to consider to find that solution? The problem is I've been thinking outside of the box for so long that I no longer know what a box is!

It's obvious, all five of us function and are healthy when we are separated. In the absence of a financial windfall, how do we make it a long term reality without costing us further undue heartache? I'm at an impasse. I am no longer willing to subject myself or my family to any further crisis but I'm drawing blanks for a solution. Every night I dream about it, my subconscious mind attempting in vain to solve the riddle.

Four years of active daily crisis with Sissy's mental health has taken its toll. I'm anxious to move on with life, ready to consider getting back into a career. I'm tired of eeking out a minimal existence, waiting for enough money to repair our house or expand it. I'm tired of putting who I am and my desires aside. I'm weary of wondering when the tide will turn in favor of my family's survival. I'm anxious to thrive. Like a root-bound potted plant, if I'm not transplanted soon, I fear it will cost me the ability to be fruitful, if not wither altogether. And if mothers are the pH meter for the balance and harmony in a home, then nothing short of sounding an alarm should speak for the cause. Our family is dangerously acidic and has been so for far too long.

Hot on the heels of my personal position of declaring "no more", the children's psychiatrist announced he will no longer serve medicaid patients in addition, our state's medicaid is undergoing a drastic shift that could essentially strip us of all potentially beneficial mental health services including prescription treatment of such illnesses with anti-psychotics. The solution may be traveling more than two hours to find a psychiatrist that will treat AB and Sissy. It may also require that we attempt to manage their challenges without appropriate medications because we won't be able to pay the retail price for them. The time frame? December 31st of this year. My own will and wishes may very well be usurped by bureaucratic red tape, a faltering economy, a stalemated congress regarding health care and the state of medicaid, an upcoming election year and the fact that our family is not solvent to provide for private care for our daughter. Essentially, my own fate and the future of my family is no longer in my hands, regardless of how loud my alarm sounds or how acidic my family becomes.

For the time being, I cannot escape the feeling that our family is condemned to failure because my daughter can not be healthy in a home environment. My basal instinct is to run away and never look back. My dutiful, responsible nature of integrity regardless of circumstances keeps me tethered to this reality no matter how bleak. I'm finding it increasingly more challenging to factor my faith into the equation and equally difficult to reason out a logical solution instead of rushing into the first semi-hopeful option. It may be peaceful at home, but my insides are waging a war the likes of which this world has never seen and I refuse to waive the white flag of surrender.