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

Tuesday, August 30, 2011

I just Can't

It was mentioned in therapy yesterday and it has stuck with me. Just like any session, it is the offhanded comment that strikes a chord and resonates long after I've left the cozy confines of the therapy room.

"healthy family"

It's an interchangeable phrase for functional family, implying that the family works well together but with pizazz, each member able to switch roles easily. The sentiment supersedes the negative connotations of the term dysfunctional family because it goes a step beyond, as though a healthy family has achieved something greater, the ultimate prize if you will. A healthy family is like an acting troupe in which all the players can recite the lines of every part should one fall ill or forget his way through a scene. All for one, one for all; never giving up, never surrendering.

In this journey as a mother of a daughter with RADs, as with many of my friends who live the same life, the term "healthy" rarely escapes my lips. We are by no means a healthy family. Our daughter's extreme behaviors, erratic mood swings, volatile anger and unpredictable nature squelches any opportunity for healthy living. Her illness becomes ours in the same manner that a bystander can die of lung cancer due to prolonged exposure to second-hand smoke.

Following the same metaphor, in the absence of daily exposure to a carcinogen, our lungs begin to heal and regenerate. Without Sissy's presence, we begin to relearn the roles of a functional family that is progressing toward a healthy family. It always astounds me how quickly we reassemble, the remaining four of us. It also pains me greatly to know that it is my daughter that creates such terminal illness for all that dwell with her. I've said it many times in therapy, if not also on this blog, continuing with Sissy will be the death of our family. There is no other course, we will be a runaway freight train on a dead end track that dumps the whole lot of us into a ravine.

Can it all really just be one ill child that makes a potentially healthy family so dysfunctional? Can I really put all the blame at her feet? No. She is the product of her circumstance and her organic issues. Only she wields the power to change her course, to pursue healing and wholeness. But mental health and our great state have the power to make sure she stays in our home whether she chooses a path of healing or not. It becomes a death sentence. With Sissy in our midst, we will never be a healthy family. It isn't possible.

Oh, I lie awake at night thinking of ways I could better myself, ways I could improve my parenting, ways I could improve my marriage. I ponder my faith, my finances, my environment, my emotional state, my physical health and my friendships. I prod and poke and dig and sift through the vestiges of my brain and always, always I end with the same conclusion: there is nothing more that I have that I haven't already given. Quite literally, I have given my health to the cause of saving Sissy.

For weeks I could do nothing but sleep. Even now, after a second run of antibiotics I find myself cutting my activities short because of exhaustion and nausea. My body has said, "NO MORE." I can't sleep without medication, I can't live my daily life without medication, I can't make it end, I can't run away, I can't dissolve this crisis into thin air, I can't convince Sissy to heal, I can't. I just can't.

Each time she's gone to the hospital I've dealt with it in a completely different way. This time I'm befuddled that I'm not emotionally connected as in previous times. This time I truly am in self-preservation mode. As I told my therapist yesterday, it's been a paradigm shift. It is no longer about saving Sissy, it is about saving the rest of us.

Having grown up in an unhealthy family, the only thing I wanted as an adult was to have a healthy family and it still escapes my grasp. Without Sissy, it's possible. But how, just HOW do I live my life without my daughter? The bottom line is with or without her, there will still never be wholeness, wellness, healing or health. How do I solve a problem like Sissy? I can't.

I just can't.

Friday, August 26, 2011

Ooo Eee Oo Ah Ah

I called the witch doctor and this is what he said:

He also said STRESS.
Yep. Long term exposure to stress has depleted my immune system so much that a minor infection that didn't even show up in blood tests made me sick. The nausea? More stress-related illness. Now I'm on a z-pack and ph.enegren for the nausea. Holy crap if I don't feel as manic as the video images! Still, nice to be on the mend finally after weeks of bed rest.

I had always wondered why the level of stress we were under hadn't caught up with me. No need to wonder, it did. Ooo Eee Oo Ah Ah ting tang walla walla bing bang.

Here's hoping that when I've finished this round of antibiotics I stay on my feet. And here's to hoping that when the review board goes over Sissy's case she isn't discharged in the next two weeks because it will surely undo my recovery. I going to have to take it all so slowly. I may be feeling better, keeping food and fluids in but I'm still dizzy, sluggish and beaten down.

I've thought of having my doctor write a letter to explain how significantly Sissy's level of needs has impacted my health specifically in addition to the rest of us. I doubt it would do any good.

Did a phone therapy session with Sissy yesterday since I couldn't make the trip on Wednesday. 50% of the session was silence from Sissy who seemed either incredibly bored and disinterested or completely incapable of processing the questions being asked of her. Probably both. Whatever. We knew she wouldn't receive treatment, she's not willing or able to recognize the need in herself to change. We're just hoping her stay lasts longer than a month.

Ooo eee ooo ah ah ting tang walla walla bing bang

Tuesday, August 23, 2011

Miserably ill

Last dose of antibiotic taken yesterday.  I began to feel better by 10 pm.  Woke up, glands swollen again and then hurled my guts out directly after returning home from taking the kids to school.  Slept until 1.  See the doctor Thursday but not before I make a trip to see Sissy tomorrow for a face-to-face therapy session.

How in blue blazes am I supposed to do that?!?

This is the worst I've felt yet.  Thanks for your comments and suggestions.  It's not my thyroid, my symptoms are completely different when it goes haywire.  Pregnancy would be EXTREMELY unlikely although I've thought of taking a pregnancy test just to prove it negative.  Adrenal insufficiency sounds possible but it doesn't explain the swollen lymph nodes and despite my loss of appetite, nausea and vomiting, the scale remains steady.  Go figure.

My first attempt to make and upload a video. not sure why but the sound is not tracking with the video.

Click here to access the auction. In the left sidebar click "crafts" to scroll through the homemade donated items. You'll find the quilts there listed alphabetically. Christmas quilt, Heart Strings quilt, I spy quilt.

Sunday, August 21, 2011

A spot of humor in an othewise INSANE life

I discovered that I wrote this post six weeks ago and for some strange reason, never published it.  Thus, since I have been unable to pull out of this physical funk and therefore am unable to think of anything witty to say, I thought I'd post it now.  First, here's proof of my current state:

Some mornings when I wake up I'm ill right from the start and it won't pass until mid afternoon. Other days I wake up feeling better and by mid day I'm crashing and burning, too sleepy to think, waking up two hours later in a foggy haze. I take my last antibiotic tomorrow and I am concerned that it has not been sufficient to knock out whatever is coursing through my veins. Curses, detestable infection!

And on that note, here's a window into a twenty minute excerpt of our crazy life, the unpublished anecdote I wrote in early July.

The Backstory

Sissy has THIS adorable little nugget, compliments of her Aunt, a Christmas gift she asked for.  She plugs in her mp3 player and it barks, bee bops, lights up and in general, boogies along with her.  She loves it.  LOVES it.  She recently earned it back for good behaviors so it has gotten a lot of mileage, so much so that the factory installed batteries required replacement.  You know the kind, the weird Japanese looking batteries that last longer than God.  Seriously, I'd buy them over D.uracell if I could find them locally.

And so begins my story.
 me seated at kitchen table reading.  In a rush and a panic, AB enters the room

AB:   Mom.  MOM!  It needs new batteries.  It won't work.
ME:  *pushing the button on the dog's nose and it begins to bark and dance*  It looks fine to me, son.  Are you sure you had the mp3 player plugged in correctly.
AB:  YES!  And I checked the mp3 player, it says the battery is good.  it plays music until you plug it into the dog. 
ME:  Um.  Ok, let me see.  *I push the button again and listen.  Sure enough, the dog's movements are slow and jaunty, the intro music it plays is slow and warbly*  Yep.  It needs batteries.
AB:  SEE!  So do we have them mom, the batteries?  Can you do it please?  We're playing with it.
ME:  OK.

*enter the laundry room where the battery bin is located.  AB is so close behind he is practically tripping me.  I open the drawer*

AB:  Mom.  MOM.  Do you have them?  The batteries?  Do you mom?
ME:  Hang on a sec son, I'm just now looking to see.
AB:  And you'll need a little screw thing.  Do you have that too?
ME:  Yes son, just a minute.

*I locate two AAA batteries and the mini screwdriver, shut the drawer and turn to exit the laundry room.  AB is blocking the door*

ME:  Son.  Can you move please so we can go back to the table?
AB:  Huh?
ME:  I want to get out now.
AB: Oh.

*we exit the laundry room and resume our original position at the table; me seated, AB hovering over my right shoulder, barely giving me elbow room to turn the screwdriver*

AB:  Can you do it mom?  I can do it.  Let me do it.  Mom.  I can.  I CAN!
ME:  I've got it AB.  Hold on.

*The two screws are removed and the butt of the dog comes off revealing two AAA batteries from Thailand*

AB: WOW!  What are those?!
ME:  Batteries.
AB: No.  those aren't batteries.  I've never seen them before.
ME:  Yes son, these are batteries.  They just look different.
AB: but why?
ME: because they're from the manufacturer in a different country.
AB:  what country?
ME:  I don't know son.  China or Thailand or something.
AB:  Which?
ME:  I don't know.

* I began putting in the new batteries during this entire discussion, trying to make sure I had them in the right direction, snapping them down, etc.  Sissy entered the room*
S: Did you do it?
ME:  Still working on it.
S: Oh.  Why is it taking so long? / AB: How do they make them?
ME:  One question at a time please.

*Sissy came to my left side and hovered just as closely as AB.  I barely had room to move BOTH arms now and they were asking different questions in each ear.  The Dad was seated in the living room, the pass through doorway making him visible from our line of vision*

TD: AB, I think they are just button batteries inside them.
AB: huh?
*all three of them simultaneously*
S: so how much longer? Are you done? / AB: What's a button battery? / TD: Isn't that right honey?

*at this exact moment I was prepared to screw the butt of the dog back on when I noticed a sticker just below the tail.  "Don't forget the third battery"*

ME: o.O
*the three of them repeat their questions simultaneously again.  Remember, I'm blocked in by S and AB and The Dad is calling out to me from another room and now, NOW there's the mystery of the missing third battery*

ME:  Um, guys, this sticker says there's a third battery.
AB:  no there isn't. 
ME:  The sticker says there is.
S:  It's lying.
AB:  They put it there as a joke.

*I'm turning the thing over and over, trying to determine where the third battery is supposed to go.  I opt to remove the first two batteries thinking I'd missed the third battery compartment beneath them*

AB:  The sticker doesn't mean anything.
ME:  Son, they don't put stickers on toys that say "don't forget the third battery" unless there's a third battery one might forget.
AB:  Maybe they put that sticker on all of the toys and it's only for some of them but not this one.
ME:  No, that's not the way manufacturers work.
AB:  Well, it could be.
ME:  *sigh* Ok, son, maybe but not this time.
S:  No, it's just a joke, to confuse you.  There's no third battery.
ME:  *to Sissy* That's not how manufacturers work either.  They don't sit around laughing to themselves about how they can confuse consumers by putting random stickers on the battery compartments of toys that say, "hey dumb dumb, don't forget the third battery" when there isn't a third battery.
S: yeah huh.
ME:  No.
S:  It's not there.  See?!?  There's no third battery!  it's just a joke!
ME:  This is NOT a conspiracy theory.  This is a TOY!
AB:  yeah, I think Sissy's right.  It's just a joke.

*The Dad, privy to this entire exchange chimes in*
TD: Did you check underneath the batteries?
ME:  *having unscrewed everything down to the electronics board attempting to find the third battery without luck* Yes.  It's not there.
S:  See.  It's a joke.
AB:  Yeah, that's what it is, it's just a joke, to confuse you.
ME:  *exasperated*  It is NOT a joke!  That is complete and utter paranoia, there is a battery here, somewhere, I will find it just STOP BREATHING DOWN MY NECK AND LET ME THINK!!!!

Sometime throughout this exchange, WG had entered the room and was seated at the table watching the entire scene, bemused, not doubt.  Hearing my exasperation, she picked up the butt of the dog, the portion I removed to access the battery compartment.  She flipped it over.

WG:  Mom.  Here's the third battery.

I stared at her for three seconds, saying nothing, realizing that I had allowed Sissy and AB to get me caught up in the bizarre machinations of their convoluted, paranoid, erroneous thought pattern.  In four words, WG solved the mystery.  I gathered my wits and laughed out right, reaching for her and hugging her hard.

ME:  WG!  You saved me!  Thank you thank you thank you for being sane!  I love you I love you I love you! 

I kissed her all over while laughing. 
WG:  Mom.  MOM!  Stop, you're hurting me.  Geez, it's just a dumb battery.  It was in the dog's butt, no big deal. 

She skipped off rolling her eyes.  AB and Sissy, still hovering over me, breathing down my neck during this entire exchange chimed in.

AB: So can you fix it now, can you?
S:  Yeah, because we really want to play.
ME:  *sigh* Just a second while I screw the butt back on the dog.
AB:  YAY! *skipping and stimming*
S: *snatching it from my hands and chasing after him* AB!  Let's play it in my room!

Thursday, August 18, 2011


Even though my CBC came back normal and my mono test was negative, I still feel like crud. The antibiotic I'm on is making me ill and my initial symptoms are not lessening. I HATE being ill, HATE feeling unproductive, HATE being physically incapable of keeping up with the everyday nuances of life. I know I should just rest and let my body recover but it's SO hard to slow down after so many days of nonstop manic crazy with Sissy. Because every day with Sissy is non stop manic crazy.

I'm sitting in the garage enjoying the sunshine, hoping the vitamin D will help, if nothing else, it should lift my mood. I did the same last night and enjoyed a beautiful rising harvest moon. I rather like being outdoors, it's soothing. I have silly notions of suspending a hammock from the rafters in the garage so I can just sleep out here too. I'd have to reinforce it though, no way it would hold my weight currently. But hey, at least I've slept through the night for two nights in a row. First time since the week before Sissy's discharge.

How is she? Pbft. Same old same old. She's not going to receive her treatment while at the hospital. I'm beginning to think she's hit a wall mentally and will never be able to see the need to receive her treatment. This past year I've tried to stand outside of her needs emotionally so I can gain a neutral perspective, not an easy thing to do because for all her challenges, i do so love her, very, very much.

Standing on the outside I can see, she's just missing so many fundamental pieces, as though someone forgot to lay down the rebar before pouring the cement on the bridges in her infant brain. Civil engineers just destroy the erroneous bridge and build again. Therapists, psychiatrists and medication can do little more than hop out on the precarious bridges of an unstable mind and patch up the gaps with quickrete. And even then, it only works if the bearer of the mind is prepared to accept the quickrete. Without scoring of the contact surface, the quickrete won't hold fast. Sissy, it seems, is unwilling to let the surfaces of her mind be scored and prepped for patchwork. Some days I think it's choice, other days, i grievously accept that such is the nature of a damaged mind.

I watched The Soloist yesterday. Point of fact, I watch many programs about persons with various challenges. Seems television, literature and the box office are riddled with the fascinating machinations of the altered mind. Sure, I tell myself, it's all fascinating when your daily life isn't sinking in the quicksand of that living hell. Put on waders and get in this muck with me and it won't be fascinating anymore, it will be a nightmare.

The movie, based on this book, is excellent at pointing out that for some mentally ill persons, recovery as neurotypical citizens understand the concept, is a foreign and unwanted prospect. It begins with the individual first recognizing the need for self change; they must understand that their mind is misfiring, that the reality they know and live isn't a healthy one. It's a huge hurdle and judging by the content of the film, and many other media programs on the subject, a hurdle that is never surmounted.

Some will argue that the human species is evolving mentally, stating that the rise in mental disease and the savant autistic and schizophrenic minds are nature attempting to increase the mental capacity and acuity of the human brain. Others will argue that the attempts of SSDI, mental health and faith-based initiatives to steer the mentally ill toward functionality are thwarting natural selection, a sort of biological eugenics, if you will. It can be argued that the continuance of support for the unyielding challenged, alcoholic, addicted or retarded mind perpetuates the subsequent generations of equally or more damaged persons. In tandem, the human species is riddled with a rise in infertility. Ergo, we have to ask ourselves as a society if we've set the stage for adoption and fostering of ill children by sane people unintentionally.

Bear with me a minute. If "crazy" doesn't know it's off kilter, it's not going to see the need for change. Indeed, "crazy" will perceive it as normal. 90,000 homeless people on the streets in L.A., many of them mentally ill, most of them unwilling to get help, some self-reporting that this is their chosen lifestyle, that they are happy and free.

Enter the "sane" who think "crazy" is crazy so they try to undo crazy. Except crazy doesn't want to be undone.  Worse yet, some "crazy" is set in stone by organic issues: generations of crazy begetting crazy. Thus it becomes a tug of war equal to the attempt to change the current of the Mississippi to run back toward the great lakes instead of the gulf. The very thought of it is enough to drive the sane mad themselves.

Perhaps, the best approach as the movie presents, is to just love "crazy", make sure inalienable rights are afforded and then let "crazy" do what crazy is going to do. Does Sissy love us? She says she does. Does she love us the way sane minds love? Does she perceive the difference? No to both and she never will. It is an injustice to expect anything different from her. It will make ME crazy in the end.

It is not the life path I thought I was on, to say the least. Neither is it a life path that can be properly explained so the reader or listener can fully comprehend the magnitude, weight and scope of this thing called parenting a mentally ill child. Nearly 400 posts and I think I'm just beginning to help people see what I live daily, what has become the connecting fiber of my existence.

Oh what I would give for some rebar.

Sunday, August 14, 2011

Who am I?

Describe myself in 500-5000 words without referring to one of the roles I play in life: daughter, sister, wife, mother, employee, etc. A personal exercise recommended by Corey

I am a 36 year old woman but I feel like I’m 56 on a good day. I’ve always felt older than my chronological age in part because I felt like the circumstances of my early childhood required me to grow up sooner than my peers. I also feel older because the continuing hardships and crises I have endured in my 36 years seem to have added time to my body.

My body. My body has been an enemy. As a child, I was always sick, picking up whatever infection was running around the community, church or school. I joke but it’s true, I have a vomit story for every year of grade school. At age 8 the doctors were afraid I had leukemia. By age 14 my menstruation had started late and with a vengeance, marking a lifelong trial with my hormones. By 19 my thyroid was slowing down. At 23 I was diagnosed with hyperprolactinemia and a microadenoma on my pituitary gland in my brain. I took a year of oral chemo, a year I don’t remember much about because of the medication. I have fibrocystic breasts, polycystic ovaries, endometriosis, and an aging uterus, the doctor predicts it is at least 10 years older than the rest of my body. I had a pre-cervical cancer scare in my late twenties and was diagnosed with hypothyroid disease by age 22. All of this adds up to a lifetime of infertility, a personal loss so monumental that I’ve never learned how to deal with it. It has also meant a lifetime of battling my weight, another struggle that has made it hard for me to love myself.

My childhood was difficult, my father died when I was just 12. We moved a year after his death to a completely different community and lifestyle.  I never fit in.  I was ridiculed by my peers.  Every day of my adolescence felt like a struggle to survive. My driving force was the plan to become a physician.

Without a solid foundation in my formative years, college proved difficult socially and emotionally, both of which impeded my ability to function academically. I changed career course and pursued a less demanding profession in community health education. The pinnacle of that choice was during my internship. After that, it felt like a ruse, it didn’t amount to anything because in Georgia, it’s not what you know, it’s who you know. I feel like a failure in my career. I’ve always been so smart and I’m not using that talent. Because money is a necessity for life, I stumbled upon an opportunity to teach. I kept that path for 13 years but it always felt like the wrong fit, like trying to wear gloves on the wrong hands. They still keep your hands warm and dry but it’s awkward to use them and it impedes dexterity.

For a long time, music was my soul, a way to express myself because I didn’t feel like I could emote in any other meaningful way. Through a serious of upsets, ridicules and other such nonsense that goes on in the pride-filled world of music, I gave it up. The pain was too much after already having born so much loss. Now words are my tool. It might be thought that I hide behind my words. I would argue that words give me power to speak my mind in a concise way without being ridiculed. I have perfected the art of speaking truth to others without ostracizing them. In most cases, this approach gains me many allies but occasionally it backfires and I find myself in a position of defense instead of offense. I know that my words are my weapon, more of a shield. I wield my intellect verbally because it feels like that is all I have left to defend myself. I also use my words to paint pictures, to make what I’m thinking and feeling tangible to my listener. I feel my poetry best captures the essence of my soul. Blogging helps me sort out my feelings. I need to feel heard. So often, despite my verbose nature, I still feel like the proverbial Charlie Brown teacher in the background: wah-wah wah-wah wah wah-wah.

Some days I reflect on my life and I think of all the wonderful things I have been afforded. But most days I have to make a concerted effort to love, to life, to breathe, to laugh, to find the positives, to hug, to touch, to relax, to just let be what will be. Because I feel like I’ve endured a lifetime of struggles and grievances, most of them unjust and not the result of my poor choices, it really does feel overwhelming and burdensome to be me. 36 years? feels like 72. On the days I feel particularly discouraged I think of an imaginary woman in a third world country. I imagine her hardships and her pain, knowing my life circumstances pale in comparison. I pray for her and her family. This helps me keep it in perspective. Life can ALWAYS get worse and I am blessed to not only be living in a wealthy nation but to have complete use of my faculties and am able to feed, clothe and educate my children.

I always have a nagging feeling in the back of my mind that I will die an early death like my father or that my spouse will succumb in an untimely manner as well, leaving me alone to bear the burden of our children. I tell myself it is irrational fear. Intellectually I can accept it but my physical body and my emotions want to cling to it like a sock on a sheet fresh out of the dryer. When I see old couples together, I close my eyes tight and imprint the images in my memory, willing it to be my future: as an old woman sitting beside her spouse of 50+ years. I think to myself, that ironically, it will be at that point in my life in which I will believe I am truly a beautiful person.

My faith has had many dips and turns and upsets. I don’t like to ride roller coasters in real life because they are too scary and because they symbolize what life feels like for me in reality, my faith in particular. I’ve learned so many erroneous things about religion, Christ and scripture; it’s hard to trust any of it. I know that my fear is of man and the damage man has brought to the truth of a very simple scriptural principle. Nonetheless, I’m more likely to shy away from faith than I am to run to it. I find it hard not to be angry that my life has been so hard by comparison to those around me and that the hardships my family endures have no obvious end. God seems to be able to spare the wrath in others’ lives while my own life feels doomed and cursed from the very beginning. And then there’s the nagging question: what if God as I’ve come to understand the concept, doesn’t exist after all? What if it’s just a nice story to help soothe the screaming masses?

I think too much. A flaw of mine. I often yell at myself in my head to shut the hell up because geez, it can get heady in my head.

I’ve been blessed to call two people “best friend.” Some people don’t ever have one but I’ve found two beautiful souls that will accept my idiosyncrasies and love me anyway. They are safe and will tell me truths about myself that I cannot see; truths that will make me stronger, not weaker. I don’t always want to hear that I have to fix something about myself. It makes me angry at first but then when I have time to think it over, I usually find that I agree. I always consider these friends as better than me.

My think it over time usually occurs in the bathroom. Often, if on the spur I’m expected to solve a problem or answer a question that for no obvious reason stresses me out, I just go to the bathroom or take a shower and voila. Magic. I can sort it out and solve the issue. Piece o’ cake. I like this about me. It makes me able to laugh at myself.

I have a great laugh. It’s loud but it’s contagious. And I like to laugh. It feels good. It feels safe and free.

I struggle with self-love because I don’t believe I’m worthy of love. It might have been the abuse of my childhood or the loss of my father but it is very hard for me to love myself and to receive love from others. I struggle to accept compliments that are not conditional. Unconditional praise just rolls off because I cannot absorb it, it is too broad. But if someone says something specific about me or what I’ve done, I feel very warm and emotional. It makes my knees weak and sometimes brings tears to my eyes. I guess then, I have trouble accepting that I’m loveble. I stand in front of the mirror, sometimes naked and I tell myself that I am beautiful, that I am loveable, and that I’m worthy to be loved. I know that one day this ritual will sink in and I’ll wear that truth without needing daily affirmations. I long for that day.

I feel as though my potential in this life has been robbed and stripped away. I feel that there were so many other amazing things I could have done with my talents. I get frustrated that we live so meagerly when I could have had a job that was more than adequate to supply all our wants and needs and more. I console myself with empty thoughts of I wouldn’t really be happier with more. I can’t know that such an existence would make all the emotional pain and voids I suffer diminish. I tell myself these things but I don’t always believe it.

I pride myself on my integrity of character. It is what I stand for, it is the moral compass by which I govern my life. If I cannot be a woman of integrity, than I am nothing. What does it profit a man if he gains the whole world but loses his soul? Nothing. Nothing at all. That is why at all odds and costs, I will pursue integrity. I am also very conscientious, perhaps to a fault. I will put the needs and desires of others above myself, believing they will return the favor. The reality is that not everyone is governed by the same codes of conduct. My personal codes of conduct are not the norm and as a result, I often feel cheated by humans. I tell myself it is because I live with high ideals and I cannot expect others to do the same but still, it chafes me.

I love dogs and have recently discovered I love horses. I need to be outdoors as it restores my sanity. Swimming is my chosen exercise regime. Hummingbirds fascinate me and lilies are my favorite flower. Purple is and always will be my favorite color. I feel comfortable behind the wheel of my minivan but sometimes I think I might really enjoy driving a race car and most definitely a motorcycle. I want to travel the country and I want to go to Europe, if nothing else, to see the place of my father’s birth. I recently learned I have dual citizenship in Germany which is very cool although also sad to know that I represent the generation in the aftermath of WWII. I also want to journey to NJ to see my father’s graveside. I haven’t been there in 25 years.

My bucket list includes but is not limited to:
getting a PhD
flying in a hot air balloon
owning a small farm
travelling abroad
seeing all 50 states of the US
go on a cruise
learn to fly a plane

I want my body to be scrapped for spare parts and the remains to be cremated, my ashes thrown to the sea. At my memorial service I want the songs I’ll fly away, fly like an eagle, Free bird in whatever order, I don’t care. I want a tree planted on library grounds with a placard and a bench beside it that is in memoriam to me.

DON'T FORGET! The orlando fundraiser auction is going on now! Bid on your favorites and help moms of attachment challenged children get a much needed respite.

the quilts I made for the auction. Don't bid here. Go to the link above to make your bids! hurry, the auction ends 8/25/11!

Friday, August 12, 2011

Auction quilts

All quilts are lap size, perfect for tossing on the back of the sofa, snuggling with while reading a book, drinking coffee or feeling cozy. Auction begins on the 15th at Watching the Waters. Proceeds go toward the Orlando 2012 trip, a respite for the women that love, nurture and parent adoptive or foster children with special needs.

Christmas quilt

Back of Christmas quilt

I Spy Quilt
Ideal for learning challenged and autism spectral kids. Help them learn nouns and hone their visual processing skills.

Back of I Spy Quilt

Heart Strings Quilt
Great Christmas gift idea for your teen daughter

Back of Heart Strings Quilt

Matching over-night bag with enough room to pack clothes, toiletries and the quilt.

Thursday, August 11, 2011

It's nice to be normal

They weren't surprised, the hospital staff that is. "Sissy, you're back," they politely acknowledged. Some got a manic reply of jumbled nonsense from her, others got a mute response with a deer-in-the-headlights gaze.

Some of the residents on the preteen female unit saw her and were glad to see her. I said hopefully in her ear, "See! I told you there would still be girls here you knew!" My turn for the mute response from her.

Intake was a flurry and a frenzy of staff and note taking and signing papers and them gathering data, furiously writing down my words, nodding their heads, speaking in code to one another about the situation, etc. Same old, same old.

Sadly, we learned that the family therapist that attended our case in the spring, the one I thought had dropped us on our heads, passed away. She had taken and emergency medical leave and succumbed quickly to her cancer. Really, she was one of the best we've ever had, that's why we were so stunned by the sudden cessation of care. The staff at the hospital did not see fit to divulge her private information to the residents and their families, thus the reason we felt like we were getting locked out.

And potentially the reason Sissy got sent home in June. Her therapist passed two days after Sissy's discharge, the hospital and Sissy's unit was in complete upheaval. No one submitted an appeal to the review board, no one set us up on the waiver, Sissy literally fell through the cracks.

The staff, hearing of this summer's events (and actually there was a whole lot more crap that went on but so much of it was not what I considered bloggable), realized and verbalized that they need to push Sissy harder to get her to demonstrate her behaviors in the hospital. This is music to my ears because it could potentially mean that Sissy will get a longer stay. [1]

The rest of us are all exhausted. All I've done is sleep. My house is in shambles. It hasn't looked this disheveled since they were babies. It doesn't help that for the past three weeks I've ignored some of my own physical symptoms, putting off a trip to the doctor. Got tested for mono today - negative, thankfully. Still waiting for the CBC results but I'm not expecting to hear a "within normal" result. Started on antibiotics today. I guess the house will be messy for a few more days.

Thankfully, the 56 days Sissy was home wasn't so long that it will require a recovery time for us to get back to normal. I asked Sissy's IFI therapist to come by in a week or two to observe our family being normal. In the past, therapists have insisted that it's in my head, that Sissy couldn't possibly be driving the crazy train in our home. I want professionally documented proof that I'm not insane, Sissy is unequivocally the engineer of our family's mayhem. Tonight AB and WG were sitting on the recliner sofa, sharing milk duds and watching episodes of dinosaur programs on net.flix, both of them worried about me and trying to take care of me in their individual ways. I just smiled and let them; it's nice to be normal.

[1] APS medical review boards review psychiatric placement cases based on the previous 30 days of behavior exhibited while in a hospital. If the patient does not display any behaviors that need to be treated, then it is deemed that s/he has no medical necessity for the placement and therefore they are denied payment of further hospitalization. At which point, the parent/caregiver can continue paying the cost of said placement, take the child home or refuse to take the child home. A refusal is considered a psychiatric lockout and the caregivers are immediately processed through CPS abuse investigation.

Tuesday, August 9, 2011

Preparations 101: A Photo Essay

Or this post could also be named Nausea as I'm listening to Beck at the moment. Seemed appropriate because good Lord, I've done this too many times and I know it's just the tip of the ice berg. By the time ya'll are reading this post, I'll be on the same nauseating road to the metro area to deliver Sissy to the same hospital, meet with the same intake team, the same nurse staff and the brand-new unit director (here's to change. woot.)

Step One: click play on this video

Step Two: Buy elastic shoe laces and velcro-closure shoes
(standard shoelaces are a hanging risk for suicidal patients. Zippers, buckles and other metal closures are potential weapons)

Step Three: Buy new pajama bottoms
(some residents have been sexually abused and the all-girl unit has shared rooms. Pajama bottoms deters the risk of the residents playing looksee.)

Incidentally, the draw strings have to be either cut, removed or sewn down so they are not removable. See also: rules for shoes.

Step Four: Do five loads of laundry so the resident's items are washed and ready to pack and because, by golly, everyone's laundry needed to be cleaned too.

Step Five: turn up the volume on the video because this really IS getting nauseating. And to think, between all the RTC stays and crisis stabilization stays, I've done this um... let's see, six or seven times in twenty-one months?

Step Six: Recover the comforter to extend it's life, toss the disgusting matching pillow sham and, after tears and sobbing, agree to make a matching pillow case. Then decide, if the blanket has been to every hospital stay, so has the pillow.

Step Seven: Buy new pillow

Step Eight: Copy the therapy book we picked up at the library
(It was serendipity. I got the book from the library the same day her IFI therapist decided to go back to the beginning with Sissy and discuss infancy and attachment.)[1]

Step Nine: Go through every photo album in the house to make color copies of photos to update her pocket-sized photo book.

Note: it must be polyvinyl and cardstock. No metal rings, no wire spirals. See also, rules for shoes.

Step Ten: Buy new rubbermaid bins to deliver personal items

note: you are not likely to get these back so don't spend a lot. See also: dollar store.

aside: you aren't likely to get many things back, actually. So be forewarned, anything you send with your child has the risk of magically disappearing. As Sissy proclaimed today, someone on the unit must have spied on her last time when she was hiding her temporary tattoos, her rewards for attending therapy, because they always ended up being taken.

Step Eleven: hit replay on the video above and crank it up. Remember, I'm on the road, driving to and from a psychiatric hospital ... again. Oh nausea

Step Twelve: make a strong pot of coffee

Step Thirteen: fill up the net.flix watch-instantly cue with a bunch of feel-good romantic comedies. Click "play" on the one that looks to be the most hysterical.

Note: don't read all the stupid reviews. what the heck do they know? life is funny as hell when you think about it. After all, as Sissy's fortune cookie read last week, life is a tragedy for those who feel and a comedy for those who think. (Ironic, isn't it?) So don't waste your time wondering what other people think. You already know what's funny.

Step Fourteen: prepare your coffee, grab a pen and begin. The stack of intake papers is long. Oh, so very, very long.

Aside: I flipped through the stack this evening as I said to AB, "you think you have a lot of homework now? Just wait until you're a grown up! I have to finish this TONIGHT!"

Oh, and my secret sister has a picture of me filling out this exact same paper work while in Orlando in March. The.Exact.Same.Paperwork. Oh nausea... SECRET SISTER HUG! Thanks for the card Angela, it was awesome if for no other reason than it made Sissy mad that I got mail today. BTW, nice timing!

And that, my friends, is how you prepare your child (and your family) for the next psychiatric hospitalization for your preteen daughter.

I leave you with this little gem:
Sissy sleeping after a rage. Her journal, the offending party that incited the riot, is on her chest. The laundry I asked her to put away two days prior, still on the bed. Because it's easier to sleep on a bed with a giant basket of laundry than it is to actually put away said laundry. The camera flash woke her up and she shouted angrily, "I wasn't sleeping!!!!!!" What do YOU think she is doing then?

[1]What Baby Needs I highly recommend it for anyone whose child is missing pieces of attachment from infancy through late toddler years. Sissy has been entranced by this text and it has spurred many questions and conversations about her life story.

Monday, August 8, 2011

If only chemo could cure this

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

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

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

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

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

*crickets chirping*

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

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

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

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

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


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

"i don't know."

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

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

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

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

Oh how I wish chemo could cure this.

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

Friday, August 5, 2011


Sissy is approved for PRTF.

She'll be in a bed at the same hospital by next week.

This after we enrolled her in our local school with a retention in fifth grade and no IEP. School begins Monday so it begs the question: do I send her to school for a few days next week so I can send her back to PRTF by the end of the week or do I keep her out?

It's been a long week. I should be excited that she's finally gotten approval (again) but after the third time your child qualifies for PRTF, it loses a little something.

At least this time her IFI and CBAY team won't be dropping us on our heads. They will continue to follow up with us while she's gone, helping us prepare ideas to help her, transition her back into the home etc. (She'll probably get 30-90 days again.)

Have called a lawyer. That will be a dead end. WE don't have tens of thousands to go against the state only to lose - as the lawyer said, they're not going to roll over because it will be a risk that they'll get a deluge of equally disgruntled families expecting the same result. Our best bet is to familiarize ourselves with the appeal process when we're denied placement in the future.

As for restraining her, since we're not allowed to lock her in her room or hold the door closed at the risk of getting a child abuse charge, when she comes out of her room in a rage we are to do the basket hold with a snuggie while the other parent helps the other children. And if there is only one parent ...

Yes well, the trick of getting therapists to be on your side is to implement their plans with a positive attitude. Fall out's going to happen, I've accepted it. But i can't keep reporting fall out if I don't also report that I tried their techniques.

yes, well, it's been a long week of meetings for Sissy. WG threw a huge fit when the current therapist showed up (they're working at the kitchen table - learning how her body feels when she's tense.) I wish I was seven so I could act out like WG because everything she does is spot on with how I feel.

And so it goes ...

Tuesday, August 2, 2011

The Dad

The Dad asked me to post this, tongue-in-cheek:

Is there anyone that would like to be our wealthy benefactor to pay for either a lawyer to represent us or to pay for private hospitalization?



and this one just because it is HYSTERICAL - pure editing genius.

i think i need to watch this movie tonight.  we have a eligibility and placement meeting in ten minutes.  i think it's going to kill me.  I'll need ferris tonight, definitely.