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Birthday Present�
I can't believe it!
I have received exactly
what I have been asking for,
praying for,
yearning for,
and have truly desired for my birthday.
The cost was not monetary,
though the path to getting here
has hit financially.
The price would seem negligible,
but for the tears and pain
traversed to obtain its arrival.
It seems a simple thing,
a minute moment,
which transitory,
would fly away on wings of hope
and have no lasting value.
An experience carefree,
leaving the recipient somewhat unmoved
within a deeper frame,
for understatement of its normality.
Some might believe it nothing,
so minimal that it is boring,
monotonous in its repetition,
enjoyable upon its fleeting path,
but a treasure?
They might not think so.
Yet, it is within its simplicity,
the normality,
the repetition,
the calm and boring nature of this gift,
that the greatest value lies.
Peaceful, quiet, soothing, comforting,
gentle, relaxing, subtle, restrained,
understated, muted, passive, diplomatic,
this gift leads to optimism,
hope, serenity,
and buoyant joy.
...my gift?
Loving conversation, a tilted smile,
a pat on the shoulder in passing through a room,
the ability to receive an embrace, to give one,
willingness to accept opinions, to plan for the future,
and to sit within a room with family in peace...
It is a Happy Birthday�
Thoughts run circles in my mind.
Sanity is left behind.
What to do and where to go,
answers hanging, I don�t know?
Go to school or wander free?
Questioning where he will be,
when summer days are at an end,
and leisure time has all been spent?
I'm wondering what will he do?
Achievement done, and made it through?
Dreams of life have undergone,
renovation, as he's grown.
Perception changed within his world,
when what we see, for him is furled
in funneled storms where lightning strikes
to burn his thoughts before his eyes.
Survival come, but at what cost?
I pray for him to not be lost.
As sitting here I cannot think,
whirlpools swirl, emotions sink.
Queries race to find the way
to save his future for today
Today is David's first ever IEP meeting. Do we want to continue with him completing his senior year? Would it be less stressful, with higher chance of success, to do his GED and thn comm college? Just a couple courses of his choosing and interest at a time? Questions.....
We completed the IEP meeting, it went well. The evaluation showed that David was of average intelligence, which we knew. The school psychologist told us that she did see most difficulty in areas of comprehension, and executive functioning. He had trouble following multi-tiered instructions, but was able to complete tasks well if his name was said at the beginning of each task. She stated, that if she said David's name first, he would look up and make eye-contact and be able to complete what was being requested of him.
The school's recommendation was to have him continue with regular education curriculum. They did say he would be eligible to take his calsses in the resource room whereby he would have more assistance. The school is willing to allow David to take Algebra I, instead of Trigonometry. he had previously completed Algebra I as an 8th grader, but not at the High school level. However, in order for David to graduate with a diploma with the rest of his class, he would have to carry a full academic load next year. One full year of English (12th grade), a year of Science, a year, of Math (failed this year), a year of Econ/Gov, a semester of Chemistry (failed this year), a semester of PE, and possibly a semester of History (probably failing this year). He had told us that if he does attend school next year he wanted to take band. This means that he would have a minimum of 6/7 periods all year, and possibly 7/7 periods for one semester. Additionally, we were told that when a student is being taught in the resource room, they must complete all homework to pass. Homework is the biggest stressor he has had this year!
That much of an academic load, is simply too much, and would be too stressful for him to cope. Therefore, he will formally withdraw at the end of this school year (one more week) and pursue his GED.
This afternoon and evening were probably one of the best in a long time. It seems that with the decision to go for his GED, a world of stress has lifted from David's shoulders.
He did nt want to mow the lawn this evening, He tried to get hold of his friends, but could not do s,. he took several flyers out to leave at doors, soliciting work mowing laws for this summer, when Gene got home, he did talk to David and managed to get him started on our lawn! David did a good job, and we had a very good, coherent, conversation this evening. David was pleasant, cheerful, and simply fun to be with. I can't remember when he has had as pleasant an evening.
Life is good!
God is good!
Today is a day to be remembered!
Passing Peace...
Quietly, she sits, afraid to make a sound,
to breathe, to blink her eyes,
for fear that this harmonious moment may fly away
on feathered breezes into the balmy afternoon
Timidly, she savors the sweetness of the silence,
tasting and testing the fleeting pleasantness
heralded upon the scented winds which blow softly
caressing her cheek with a velvet grazing
Wordlessly, she lifts a song of praise to the heavens
with heartfelt thoughts of gratitude
for the gift of grace which has come to rest
within the battlefields of her irrational world
Unobserved, she remains closeted,
absent from perception
as customary enemies have shaken hands
upon a temporary field of truce and consolation
Wonderingly, she is amazed and astounded,
staggered and surprised at the occurrence
heretofore unachieved, whose miraculous manifesting
was previously thought, an impossibility
Admiringly, she gratefully takes pleasure from the view,
which ephemeral, may disappear
within a moment to leave behind
but a shadow of the marvelous happenstance
Ecstatically, this one instant of validation and glory
has established recompense for all past wounds and injustices
she has endured, repaid within the transitory experience,
wherein the momentary joy she feels will last,
for an eternity
I haven't written since last Friday, so this entry is in ways of an update.
It has been up and down, rise and fall, on the rollercoaster of David's life this week. Through the weekend, David has seemed to remain edgy, he is also tired, and I can see him gaining weight. I did add 12.5mg tid of his PRN Thorazine, to his daily medications. this has seemed to help to stem some of the severity of his agitation. It also seems to have increased his lucidity and ability to communicate in the evenings.
David seems to have the most difficult time in the morning. Given a choice, with nothing else more pressing, he would sleep until noon or later. He is tired, groggy, irritable, and edgy. Dalton on the other hand is hyper, invasive, obnoxious, oppositional, and pig-headed in the morning. He has been waking earlier than normal, so I have had to deal with getting between these two to keep the peace until David leaves for school.
Saturday, David had a rough morning, he and Dalton got into it before we took Dalton to his Challenger baseball game, however, he had cleared some but the time we got home. he mowed the neighbor's lawn for $$ and did a decent job. Gene was upset that David did not mow ours first. This got David upset.... We did manage to give a bit of space, and after we all had lunch, a nap or rest, etc... David did mow our lawn Sat evening. This is a definite improvement. I see that he is able to have motivation to do atask, and follow through and complete it. he is also showing the ability to do things we are asking of him, even when he woudl rather not, sometimes...
Sunday evening, David has a pretty good evening after a rough start to his day. Gene took the boys to the park and they played at and walked by the creek for a couple hours, until it started to rain. Gene had taken a nap Sun afternoon. I had tried to do the same, but did not do so with Gene. Instead, I lay on the sofa in the family room to play buffer between the boys. They kept taking turns trying to irritate the other, and initiate disagreement... So I stayed home while they did the park thing.
This week has been a similar pattern, I think it is becoming consistent... I guess this is a form of stability, at least to the extent that we have an idea what David'd temperment is likely to be at a certain time of day. Mornings are touchy at best, and afternoons, immediately following school are similar, ezpecially when Dalton gets home as well. However evenings, seem to settle out. We are able to have some good times now, that we had not been having before.
Monday evening, David was clearheaded and we actually had a good conversation about school, college, jobs, living arrangements, and future plans. We have his IEP conference (first one folowing his evaluation) on Thursday. We discussed the pros and cons of a GED, the need to get a job or volunteer, the necessity of maintaining school friends, even if he does do the GED, and our hopes for his future. It was an enjoyable evening. David was even able to play some basketball with Dalton, as long as Gene and I played interference between the edginess of their interactions.
Yesterday, David had his CBC dond for the Clozaril, and TSH levels for his endocrinologist. before we left, the boys had gotten very upset with each other, Dalton wa just home from school, David wanted to be left alone, and Dalton was unable to do so. David them went into his controlling behavior and yelling at Dalton instead of coming to me, then it spilled onto me as well...
I was pretty upset with both of them in the car. However, we did manage to calm down overall by the time we got to the lab, and on the way home. David had a goodevening and even did history homework!!!!! This is the first homework he has done in two months! I am amazed.
Overall, I am pleased with the progress of David's recovery. We are getting there. It is slow, but progres is being made. When we see his pdoc on Friday, we plan to ask about increasing the Clozaril so we can stop the Thorazine. We also plan to ask about shifting the heavier dose to the evening, and less in the morning. David is not happy about the sedation he is experiencing.
Today is a new day, and the lesson of the week is to appreciate and savor the good times when they occur to be able to recall them later when things are not going so well.
There is always a light, no matter how dim, if only we seek to find it.
My World�
My world consists of one room
I built it myself
It has no windows, no doors
Only walls and a floor
But its walls move�
They never move further out
Only closer in
Toward me
To crush me
To force me to become small
To crawl deeper inside myself
There is no light inside my world
Only darkness
And the darkness grows
As time goes on
As I grow older
I become smaller
As I become smaller
Other people matter less
As others are less important
I look more to myself
And become fearful
For I am of less value to others
Than they are to me
Every extra thing I retain inside
Causes me to fade
further into the background
One day I will disappear�
Completely
My world consists of one room
I built it myself
It has become my prison
And I have no escape
(I was going through old poetry and pictures this evening from years ago, I cam across this one I wrote when I was 15-18 years old.... Depression can strikeanybody. I can only imagine David feels worse than I ever did)
-----------------------------------
Nightfall�
Reaching, monstrous tentacles extend
Grasping for the heavens' earthly gates
Reaching out to feathered creeping clouds
Floating past, into the greying sky
Rays of hope faltering, disappear
On evenings� conquering entry to the world
Driving hope into the depths of gloom
Beyond horizons, underneath the sea
Straining, searching orbs pursue lost dawn
Chasing vanished skylines, bolted down
Stretching painfully within the dark
Craving safety felt upon pale edge
Powerless to pause the flight of joy
Existence� exodus inhaled by dread
Anxiety expands, encompassing
Hidden fears obscured by days� events
Shivers emerge to intimidate
Nightmares appear, engulfing lasting peace
Radiance digested by the dusk
The crawling ebony inhales belief
Thoughts stagger trapped inside the creeping dark
Where gratitude seems leveled by the weight
Of violent, burgeoned, deadly, dreary, blurring
Time�s animation lost vitality
Last lucid thought, a plea of prayed entreaty
Begging for a moment to conceive
How to survive within a darkened world
Isolate, alone, forlorn, in need
For some reason, and I have no clue why, David really seemed to have a rough day. As I mentioned earlier, he awoke unusually irritable, and edgy. He ended up sleeping most of the day, and when he woke, he was not much better.
David seemed to fluctuate, back and forth, between, barely leashed irritation, and blowing a gasket! We had intended to go to a drive in theatre this evening. Unfortunately, David lost it pretty badly, verbally, when I asked him to take his textbooks and game paraphenalia to his room. Instead we ended up renting DVD's.
To David, this change in plans translated to yet another example of Mom being a "LIAR!" I tried to explain the need to changing plans... basically, his reaction illustrates his instability this evening. When David gets unstable, overwhelmed, stressed, whatever the cause, he becomes extremely inflexible... He sees the world as very black and white. There is no room for changing plans, for unexpected data, or any adjustment to the plan he has for his world to function.
When he is doing better and his meds are containing his symptoms better, this is not nearly this much a problem. I did manage to get him to take 12.5mg of Thorazine (PRN) this afternoon, although I do not know how much benefit it had.
I ended up just telling him, that when he loses control and lashes out verbally before we leave to do a planned activity, then to use his terminology, I will become a "Liar" rather than expose him or the public to a potentially difficult, negative, dangerous situation. I told him that if he wan't to use the term "Liar" to describe my actions, so be it. My job is to do what is best for him and this family, not to make him happy by following his dictates...
I hope and pray that tomorrow is better.
I need to remember: There is a light, no matter how dim, if only we seek to find it.
This morning, David does not have school. Dalton will have his last day of school for this year, on thursday, next week. David will continue thru June 3.
Since David did not have to get up early today, I let him sleep in. He has still been experiencing some pretty heavy sedation in the mornings. He had asked me about starting to take Provigil PRN again, we had stopped this medication when he was in the hospital, to wake him up. I talked to him and explained that we did not want to add more medication if we can work with what we have. At therapy yesterday, we discussed him drinking cofee, or a caffienated soda in the morning to see if that will help.
David did not get up until about 9am this morning. However, upon trying to open the dishwasher, it got stuck, he begain yelling loudly at me, I told him to check the cabinet for a bowl, and he used several cursewords, including the traditional.... F'ing B'ch. :0(
This was something of a surprise, as he has been waking up without issue since home from the hospital. When he has problems, they usually have been in the evening, when overloaded and exhausted. I'm not sure what happened this morning.
On a good note... I told him, in no uncertain terms, that I would not accept anymore profanity today without consequence. I got him a bowl, and told him to eat breakfast, take his medication, and COOL OFF! He did.
David tried going to a friend's house, but everyone was still asleep, so he came home and took a nap himself. the sun is shining outdoors today, it is a beautiful break form several days of rain and storms. I hope this is a prophetic indication that David will continue to do well and get better as time passes.
Yesterday, during therapy, David was cheerful, JOVIAL!, and animated!!!!! This is a first forhis therapist to see him this way. He still has his negative moments, but we are seeing more of the old David coming out to visit. After all the pain and tears in the past several months, it is revitalizing, refreshing, and rejuvenating, to finally see some real light upon the horizon....
God bless you all.
It has been 2 weeks today since David came home from the hospital. he is currently on 200mg Clozaril BID, 80mg Geodon BID, his Endocrinologist just raised his Synthroid to 88mg daily. He halso has Trazadone PRN for sleep, and Thorazine PRN for agitation and psychosis.
I am very pleased to see that David is, for the most part, doing much better. He is not making violent threats anymore, and even when he gets upset, he is not actually presenting violent actions. His mind seems to be clearing some. Although he has not done homework, still, since 5 weeks before his hospitalization, he is talking moer about school, without getting upset and losing control. He has been showing motivation and initiation to do activities which he is interested in doing. Example: he mowed the neighbor's lawn last Saturday without being asked, he did a good job, presented a bill, and received payment, all on his own. He tried to go to youth family group for the first time in months. This is a church related gathering. They have stopped for the summer, but he made the effort to go!
David is still very irritable, especially when tired or incomfortable. If he is asked to do anything during these times, he still will decompensate and break down into cursing, yelling, and name calling, when accusations of persecution and paranoia... he is complaining that he is havint trouble staying awake during the earlier part of the day, at school, and has asked me about returning his Provigil prescription to wake up. I told him I would prefer to wait and talk to the doctor next week, he agreed to do so. I wonder if we changed the Clozaril dose to 100am, and 300pm, if it would help????? We will talk to his therapist today and relay a message to his pdoc.
I have a feeling, that we are coming to the point that we will have to realize that there is a level of symptom containment, David will reach, and the remaining irritability and agitation, paranoia and victim identity will simply have to be accepted and managed. It does not look like he will be one of those lucky few, whose symptoms are put in complete remission by medication. I think I have been hoping and praying that this would be so, but have to accept that it will not be. Yet another step in the reality of greiving and adjustment in dealing with this illness...
David did remarkably well while we were gone to Vegas. My mother relayed that he did not lose control while we were gone, and though she did nto ask hardly anything of him during that time, his affect and overall functioning was noticably improved when we returned.
We filled his medication yesterday, so far his bloodwork seems to be just fine. His doctor has requested that we not do anymore increased in dose until after we see him next week on Friday. We are hoping to see increased efficacy of the currect dose as his body adjusts to the medication.
Thanks you so much for reading my thoughts, prayers and hopes...
I have just completed a book of my poetry and thoughts related to dealing with david's illness and our journey through hospitalization... available at http://www.lulu.com/BettyJo
God Bless,
There is always a light, no matter how dim, if only we seek to find it.
We're back from Vegas, Both my boys did well with their grandmother, and David seems to be doing better with his medications.... Hopefully we will continue to see improvement. He is up to 400mg Clozaril, 160mg Geodon, and is currently taking 25mg Thorazine PRN daily. It is nice to see smiles and motivation returning to his life... :0)
David came home from school yesterday, very pleasantly. We found out he had mowed the neighbor's lawn Saturday when my mother took Dalton to his Special Olympics track and field competition! He did this on his own, without being asked, and did a good job, and took a bill and was paid...all on his own!
Last evening, David willingly mowed our lawn while Gene and I did additional trimming and yard work. He did get frustrated and loud with Dalton after a while, but given that he was doing more than has been asked of him since he came home, he did wonderful. Even with the upset at Dalton, he did not go beyond the point of name calling and yelling. Instead he stayed away, alone, distancing from the rest of us for a period.
He still has done zero homework since returning to school, but actually talked to me about school for the first time, coherently and calmly yesterday. I hesitate to depend on changes, but it looks like the Clozaril is beginning to settle things a tiny bit?????
Lifting Love...
The passing of worry
brings peace to her heart
as she hears a sweet smile in his voice
A song ringing praises
sounds into her world
when he welcomes her presence with peace
With eyes lifted heavenward
grace is received
as a glorious glow steals her face
Her spirit finds rescue
in love's special power
when her focus of joy gives some space
As midnight, reflected,
gives rise to a dawn
and the blackness of mind dissipates
His soul is returning
once more to the light
when it seemed dark and death ruled the race
Rebirth of a son
who's potential is known
and his future hangs filled with the days
Where dreams are an option
of possible hope
and he finally exists in a place
Of contentment with life
where daring to dream
understanding that living is nice
He's learning to lean
on the warmth of her love
and accept that its all worth the price
Beginnings...
Barking puppies
echo thru the neighborhood
Chirping birds
sing perched upon their nests
Blooming rainbows
bend within soft melodies
Children�s laughter
faintly sings of rest
Sunbeam showers
gleam on velvet fields of grass
Blades of chartreuse
rustle soft and low
Bunny rabbits
start to leap in search of fare
Nibbling insects
sing as branches grow
Lavender perfumes
the hidden hideaway
Golden vessels face
a heavenly sphere
Feathery masses
shimmer as they drift away
Hazy azure seas
craft heaven�s mirror
Filmy shining diamonds
flicker as they fall
Heavens weeping
at the radiant view
Emerald gem�s magnificence,
a blinding glow
Life reborn
as spring begins anew
--------------------------------------
Paying Bills...
With trembling hands
holding implement
allowing money's wings
to unfurl and hurl
my faltering funds into flight
I write.
Numerals begin to blend into the next
and multiplying each negative
until the sum exceeds the one
beyond which I cannot give,
Bills part
splitting with a deathly grin
ravens' bequest, an empty nest
security has flown away
and into the dark,
those who are left behind
are lonely.
With humbled prayer
I raise my hands with open palms
out to the inky, ebony black
whose helium wings on warming air
hoist aloft my shredded cash.
Silently an invocation,
a litany, of paltry petition pursued
by a benediction of small gratitude,
thankful for the fact
a microscopic positive
remains.
------------------------------------
Innocence...
Slumbering soft upon a bed of breezes
his dewy cheek lies snuggled in a dream
his silken lashes fabricate a picture
of grace depicting water colored schemes
Silent breath barely reveals his presence
as hidden well, he�s secretly watched o�er
protected by a steadfast spirit�s courage
his course surveyed until he�s washed to shore
In oceans filled to flooding with contentment
he seems the remedy, as in repose
he stirs and eyelids flutter undefended
replete with peace� fruition,
...he is hope
----------------------------------------
Soft
quiet
simple sounds
of solitude
beckon attention.
Echoes of a silent
entreaty whisper, calling.
Siren screams of consternation,
fluid conception of life, becomes
timorous, apprehensive, uncertain.
Where
nighttime
voices sing
speaking of love,
hurt, pain, grief, and loss
a word, detached, lacks peace
delivering instead , fear.
Shivers crawl beneath cooling skin
as self-preservation comes to fore
and isolation ascertains safety.
One
body
separate
soulless, apart,
may strive to live on
in darkness seeking hope.
Light to break through the black depths
of agony and discomfort
anguished anxiety and heartache
entwined, embraced within a single thought.
Alone...
-------------------------------------------
Healing...
Sounds of soft breathing whisper
bringing hope for calm waters
on wings of a prayer
Quiet emotions filter
into thoughts of peace delivered
by treasured souls
With shuttered panes just listen
to silent dreams of amity
by former foes
Harmonious and serene
capricious hearts are reticent
of proffered hands
Yet, in a season,
certainty, faith, and contentment
may yet grow
into a family
-------------------------------------------
Gratitude...
I hear him snoring lightly in the other room
My heart brims joyfully upon the sound
Silent whispers sing endowed with gratitude
I raise a proffered prayer presenting praise
Lifting melodies up to the mountaintops
Lines filled with adulation and acclaim
Honoring a presence blessed and sanctified
I celebrate his glory, in your name
Sole reason and sole purpose, I exist for you
Tell me, send me, use me I'm your tool
Adoration like a river pours out from my soul
Bowing to the honor of your rule
Thankful for the gift you gave, though undeserved
Grace imbues his presence, and I feel
Swelling to capacity my spirit flies
Eagerly devoted here,
I kneel
--------------------------------
Shattered Reality...
Woken easily upon the dawn,
clearer, brighter,
more lucid than the day before.
A spark was born into the morn
and hope unfurled its withered wings
creaking from disuse
and attempted to fly.
Sedate,
yet attending to the view,
he managed to perform
the minimum required
for the scheduled need.
Leaving
to begin his trek into the sun,
unsmiling, but composed,
seemingly he was content
within the confines of his mind.
Succeeding in survival
of his immense endeavor,
he has navigated tangled jungle paths
winding through barbaric heated reveries,
of arduous, laborious course,
secluded.
Reality unperceived.
Incadescent thoughts,
radiating passion,
simmering upon the edge of sanity,
his mind intent
has barely leashed his reason.
Sparking,
his fuse burns
with ever-increasing acceleration
dispatching peace.
Met by his mother's smile,
her soft words,
with concerned regard
for progress through the oceans' gale,
his wick ignites
incinerating hope.
Mindless fury
raves upon waves
of fervored wrath.
Serenity
held out in expiation,
a desire to appease,
to staunch the gushing bloody streams
heard spewing from his suffering,
his anguished derangement,
confused, uncertain, contained
within a dreadful premonition
he is trapped alone.
Feathers fail,
wings waver,
ballistics burn,
trajectory turns to tailspin,
as crashing,
emotions collide
and thoughts explode
'till all that remains
becomes an inferno
of incinerated dreams.
---------------------------------------------------
Liberation...
The doors of the fortress opened
and for the first time,
our hearts were hopeful,
our faces bright with anticipation,
our eyes glowed
with the surety of happy news.
Met at the door by broad smiles,
and approving proclamations
escorted to a room of preparation,
we were informed
of your impending delivery.
Glad tidings were bestowed
as a gift,
as a treasure,
as a bright jewel
to be held closely.
We received the message
with hesitant elation,
afraid to believe
you had returned.
Welling up from the depths,
fountains of my soul
previously drained,
burst forth
to flood my eyes with gratitude,
and rivers flowed.
Escorted into the sanctuary
you pierced the desolation,
the trepidation,
the terror,
and the decimation
of our shattered dreams.
Cloudless animation,
blazing forth
banished blackness from the room.
Lilting echoes of primordial days,
when you were yet
but a small presence,
were recalled,
of memories which had been hidden and buried
in graves of despair.
Packages of practicality were gathered
in arms and minds of welcome.
Words of impending excursion
into the universe beyond
lifted our hearts
to an ecstatic plane of gratitude.
Answered prayers,
fulfilled supplication,
restoration of our faith,
as you stepped out of your delusion.
Our family was born anew
within your eyes.
-----------------------------------------------------------
I've been off the computer for several days, because my power supply failed...
We had "Family therapy" with the SW at the hospital where David had been from 04/27/04, last thursday, 05/06/04. He was doing much better, to the extent that he was no longer making homicidal threats, and was showing some ability to avoid conflict by stating his opinion or upset, but walking away from the situation. They allowed us to bring him home. By this time, he was on 80mg Geodon BID, and they had titrated his clozaril dose up to 75mg/day. they increased the dose to 50mgBID for friday. I had an appt scheduled already with Dr Robertson for Friday morning.
Dr Fletcher, the hospital pdoc, would have been more confortable keeping him a few days longer, but agreed to let him come home since we had good outpatient services in place and he was not exhibiting violent behavior any longer.
David was pretty sedated over the weekend. We did see Dr Robertson, and got a RX for the Clozaril. This medication requires weekly blood monitoring of White blood Cell count. We have to provide proof of the lab results weekly to the pharmacy before they will fill 1 week worth of medication. Very strictly regulated for this medication. David's pdoc is being more aggressive in titrating his dose up to a more theraputic level.
At present he is up to 200mg/day, and by the end of this next week he will be up to 400mg, the target for now. Dr Fletcher had also recommended that we consider adding Wellbutrin to the mix to help to counter remaining symptoms after we get the Clozaril stable.
A note on the Haldol shots that David received during crisis at the hospital, he had a pretty painful Dystonic reaction (full body muscle cramps).
David still has done ZERO homework all this week. Gene and i fly out to Vegas for a business trip tomorrow. My mother came up Monday to stay with the boys while we are gone. David had a very rough blow-up on Monday evening after she got here. We had a very blunt talk with him, over the tirade and paranoia, blaming and name calling that if he was behaving like this before we left, we would have no choice but to rehospitalize him before we left. We would not leave him with his Grandmother, if he was unsafe.
Yesterday, I managed to talk to his pdoc and got a PRN of Thorazine rx'd in the meantime to take the edge off the irritability while we are gone. he took 25mg last evening and almost immediately had a dystonic muscle reation in his neck. Today, I cut the 25mg pill in half, and he is getting half when he is home from school, and the other half with his dinner/eve meds.
Tonight he was upset again, but not as difficult to pull back.
I hope and pray that the increase of clozaril will take effect soon.
Since David has been home, he has done little of anything, however, he did visit with a friend twice this weekend. It is rough, but he is barely manageable for the time being. He did admit at one point that the hospital was less stressful, but he wanted to be home.
Disbelief...
When I became a mother,
I never thought to dream
of days that ended with my breaking heart.
I never pictured blame,
oozing from your face,
and spewing from your mouth into my ears.
You could not predict
the agony I breathe,
when viewing the destruction of your path.
You drive away all help,
and spurn each reaching hand,
striking out in fear of living death.
I stand amazed, and shocked,
at the power of your pain,
erupting in a fiery, flaming mass.
Pouring rivers of destruction,
decimating dreams,
incinerating hope and tendered peace.
As thunderheads have gathered
striking claim within our home,
the lightning knives slice through our proffered love,
And blazes turn to ash
all yearning unmet needs,
and melt my stricken eyes deluged with tears.
Homicidal, hailing stones
batter living from my soul
and bruised and weary I collapse in pain.
My heart is withering
upon the tattered vine,
which, ripped and torn, lies shorn beneath your feet.
Refusing to relinquish
treasured portraits of desire,
I continue to do battle though I fail.
Shattered panes of glass,
break on cliffs of throbbing ache,
praying that one day they'll wear a trail.
A thread of consolation,
reuniting bonds,
which fallen down have shriveled from the bone.
If only I could find
a tactic to deflect
your lips of poisoned breath engulfing home.
Memories of our early days with Dalton:
On Daddies and Cats!
�Mommy, I think Daddy should move out so we can have a cat.�
This was the utterance to begin the afternoon and throw me off guard! Evidently Dalton had been thinking of this for quite a while. He was remembering his previous foster home and missing Becky�s cats. As he was happy to inform me, and anyone who was within listening range,
�I used to live with Becky, and Terri, and Bobbi, and Jamie.
They had two dogs, and two cats.
I like cats!
I wish we had cats.
I wish Daddy wasn�t allergic.�
So, began a talk about love, and family, and wouldn�t he miss his Daddy?
�He could come and visit.�
I told him that Mommy, Daddy and David loved him very much, and we loved each other. I liked cats too, but I love Daddy more. I explained that I would be very sad if Daddy did not love with us, and that David and I would cry, we would miss him so much. Daddy would be sad and miss all of us as well. I asked:
�Who do you love more?
Daddy, or cats?�
He got very quiet, with a faraway look in his eyes. Concentrating, so hard. Finally, he looked up, sad-eyed, and grudgingly told me:
�I guess Daddy can stay.
But, it would sure be nice to have a cat!
I love cats.�
To this day, Dalton still loves his cats and baby kitties. He usually is hugging one or more when he sleeps, and � every so often � will look at me with those pretty blues, and sadly comment:
�I wish Daddy wasn�t allergic to cats, Mommy.�
I simply say:
�Me too!�
I want my Other Mommy!
In the early days of Dalton�s adoptive placement, anxiety, grief, and loss were a constant presence. Diagnosed with Attachment Disorder, he had learned that:
To trust was to hurt.
To love was not safe.
To let anyone new �In�, meant pain.
He felt he would die.
Every night would be the same. This lovely child, (He was so beautiful!), with his big blue eyes, shiny blond hair, and soft, hurting soul, became
~RAGE~
My sweet, sweet boy would disappear.
He was so scared;
He was so hurt;
He was so lonely;
He had such pain;
And he was mine.
Every night, when it was bedtime, he would scream. Raging down the hall, throwing toys and anything else which came to hand, kicking and hitting walls, he would fight to live. Heaven help anyone who got in his reach.
Yet, what was I to do?
I was his Mom.
Once we finally reached the haven of his room, the fight would escalate.
I was the enemy.
I was a danger.
I was the opponent.
He was not mine.
~I want my MOMMY!~
Here I am.
I�m right here.
~NO! My OTHER MOMMY!~
Each night, every night, this battle would go on, two to three hours at a time.
I would hold him.
I would rock him.
I would sing to him.
I would cry with him.
I would hope for him.
I would pray for us.
And we�d go on.
Each night, we would repeat this scenario, only to begin again on the next eve.
I would tell him the story, His story, of how he came to be.
One time, not so long ago, there was a Birth Mommy named Marsha.
She had a baby.
That was you!
You grew inside her tummy for a long time. Then one day, when God decided it was time, you were born. Marsha loved you very much, but she did not know how to be the Mommy you needed. She had trouble taking care of you and sister Sara, and, one day, some people from the state came and took you away to a new home.
Then you lived in a foster home. This home was a temporary home, just for a little while. They could not be:
�Always and Forever�
but they cared for you, and took care of you. Later, you moved to another foster home and lived there for a year. When you lived in that home, you went to Becky�s daycare.
She was nice!
After a while, your foster Daddy died and went to heaven. Then foster Mommy could not take care of you anymore.
She got sad.
Becky loved you so much that she said, you and sister Sara could live with her for a while. Becky, and Terri, and Bobbi, and Jaime, all loved you very much;
They still do; They always will; but, they were not able to be:
�Always and Forever�
they were only able to be your family for a while. They loved you so much that they, and the state, decided that they needed to find you an �Always and Forever� family, with a Mommy, and a Daddy, and a brother.
Do you know that Mommy and Daddy wanted another little boy? We had David, but we wanted to love another little boy as well. David wanted a brother to love and play with. Then one day, the people at the state told us:
You could be our boy!
We were so happy.
Remember when we came to visit you at Becky and Terri�s? We brought you a big batman? Then we looked at pictures of our family; and our house; and our doggies; and our cars?
I REMEMBER!
Now you are our son. I love you so much. You will always be my boy. I will never leave you. Nothing you say or do can ever make me let you go.
You are mine.
You are Daddy�s.
You are David�s.
We are yours.
ALWAYS!
and
FOREVER!
I know you want your Other Mommy. That�s ok. It�s ok to miss her. I�m sure she misses you. But, she is happy that you have a family:
Always and Forever!
It�s ok to miss them. I know you�re sad. I�m so sorry that you feel sad.
I love you, and I�ll always be here.
I�LL NEVER LEAVE!
These bouts of fear, grief, and rage would eventually end with crying, and sobbing. Finally, he would stop fighting my comfort, my touch, and my voice. Sometimes, he would softly mumble:
�I wish I grew in your tummy.
I don�t want to grow in Marsha�s.�
I simply said:
�Me too.�
It took many months, actually about two years, when, one day, Dalton was playing in the drive. The neighbor girl was over, jumping on our mini-tramp. Dalton was sitting in the driveway, in his swimsuit, playing with his toys, while we were washing cars,
when I heard:
�Before I was born
I grew in Mommy Marsha�s tummy.
Then I lived in a foster family.
Then I lived with Becky,
And Terri,
And Bobbi,
And Jamie.
They had two dogs and two cats!
I like cats!
AND NOW I�M HERE!
I�M GLAD I�M HERE!�
He barely turned his head, but he sent me a look of confirmation.
Then, he continued to play.
�I Don�t want JESUS in my heart! Get him out! NOW!�
When Dalton came to live with us, I don�t believe he had ever gone to church. Certainly not often, and with his impulsivity, church, was an experience. The songs I knew and sang as lullabies, were all the songs I grew up hearing and singing. These were songs which my mother sang to me, songs which I learned in Sunday school, and songs I sang in choir:
Jesus Loves Me Every Day With Jesus Jesus Loves The Little Children
Jesus, Jesus, Jesus, Sweetest Name I Know Put Your Hand In His Hand
I Know Fill My Cup Lord I Asked The Lord Safe Am I Thank You Lord
Just to name a few. I would sing these songs over, and over again. I would sing until I was hoarse and then, still keep singing. I would sing and rock, holding and restraining his little body and soul, by wrapping his hurting self in my arms.
I would sing
and sing,
and Rock
and cry,
and Cry
and scream internally,
Why?
Tears would often stream down my face, and occasionally, Dalton would connect for a moment and touch my tears in wonder!
At times, during the day, we would talk about our Jesus songs, and church, and family, and love. I told him that Jesus lives in our hearts. He loves us, and comes to live with us, when we love him. I told him that God and Jesus made us, and that they �Adopt� us into their family, like he was �Adopted� into our family. Dalton liked this idea, and was happy and proud when he would explain to Grandma, or a perfect stranger, that Jesus lived in his heart.
Nighttimes were always the worst. When his paranoia, his fears, his grief, and his rage took over. When his brain simply ceased to function in a meaningful way. When my sweet boy was taken over by his overwhelming emotion.
There was a period of time, about a year into our adoption, where, added to the physical struggle these times always entailed, he upped the ante.
�I want Jesus out of my heart!
Get him Out!
NOW!�
Where did this come from? His oppositional nature? His fright? Was he just throwing this out because he thought it would make me angry? To hurt me? Or, as my mother said: Was it Satan�s demon�s possessing my child?
I gave the only response I knew:
Sweetie, when Jesus comes to live in your heart, he will always be there. You cannot send him away. Nothing you do, say, or think, will make him go away.
When you are
�Adopted�
it is
�Always and Forever.�
I simply held him
tighter,
closer,
and kept on singing,
and crying,
and praying,
and screaming internally,
Why?
Memories of our early days with David: Re: Febrile seizures�
He stopped breathing!
One day, David was only about seven or eight months old, I was at work, when I got a call from my mother:
�David stopped breathing!�
My first reaction was panic. I managed to get her to complete the statement that he was breathing again. She said she tried mouth to mouth, and then he seemed to be breathing again. She said after he was breathing again, he was stiff sandwiching all over. I told her to take him to the hospital. I remember thinking:
�Thank God�
she was there. My sister was watching him for me for a couple hours. Dorothy was only 16. Mom said that he seemed fine �now�, so she felt better waiting for me to get there. I was twenty-five minutes from home, on a good traffic day. I remember getting into the car, and driving like a �Bat out of Hell� to get home. Like any time when you are having a true emergency, there was a wreck! Traffic was slowed. Then, as I finally got past the wreck, there was a train�.. It seemed, I would never get home to my baby.
The only thoughts, other than Murphy�s Law for driving, that I can remember were:
Please God, let my baby be ok!
Please God, let my baby be ok!
Please God, let my baby be ok!
Please God, let my baby be ok!
When I got home, all I wanted to do was pick him up, squeeze him to my heart, and never let him go! Next, lay him down, look into his eyes, make sure he was �there�. Hold my ear to his chest to make sure he was still breathing. He was so hot!
I rushed him to the emergency room, only to have him go into another seizure. Evidently, David was having �Febrile Seizures�. These were explained to me as, seizures caused by his body temperature raising too quickly for his brain to handle. This fever was caused by an ear infection. They prescribed antibiotics and gave him a shot of Phenobarbital. They told me, chances were, that this was an isolated thing, and he might not have another.
If only�..
As time passed, it became abundantly clear, that David was going to have many more. We were referred to pediatric neurology at Children�s Mercy. This doctor explained to us that febrile seizures were fairly common, but usually were genetically inherited. Turns out that Gene had had some when he was little. He had been on Phenobarbital until age five. The doctor explained that this is not epilepsy and children, usually, outgrow the problem about age five.
He explained that Phenobarbital has been found to cause learning difficulties, so his recommendation was Valium for 48 hours if his temperature reached 101 degrees. David always seized at 99! He would seize before we knew he was running a temp.
As time passed, David was almost always on antibiotics due to ear infections. He would be on the antibiotics ten days, then off a week, then sick again, then more medications. He had tubes in his ears at age four. Almost all of his seizures were due to ear infections. And, almost all his seizures happened at 4:30am, in my bed. We usually had him sleep with us because he was sick.
I would wake up with him �Twitching� in the bed.
Lots of early am showers after being thrown up all over.
Ahhhhhhh, the joys of motherhood.
In addition to having a unusually low fever threshold, David had unusually long seizures. One of the earlier bouts, was a 30 minute seizure, he began to come out for about 10-15 minutes, then went back into a full-blown seizure for 90 minutes, unceasing! They did a lumbar puncture, to check for meningitis. We were told his ears were clear. However, 24 hours later, sure enough, �Ear Infection!�
I wanted to shoot the doctor who did the lumbar puncture. I swear I could hear him screaming through two closed doors and sets of walls! They told me they do not administer anesthetic to babies, because�.don�t you know?
�Babies don�t feel pain!�
Thank God, David did outgrow his tendency to have seizures. His last one was just over five years old. He was with his Daddy and Uncle, in a snowsuit in a mall parking lot!
The funny thing is, that, at the time, it did not seem David was sick all the time! It just seemed normal. Like not leaving the house without a diaper bag packed with liquid Valium in little glass vials, and apparatus to administer it rectally in case of a prolonged seizure of over 15 minutes, was normal!
It is only in retrospect, do I realize just how sick he was, and how lucky we are. I counted once. I think he had somewhere around 45-50 separate illness incidents where he seized. Some of these were more than one seizure, per incident!
Nowadays, I wonder how much all his seizures impacted his diagnosis today?� About Mr. Moon�
I remember when my David was little. You know, that inquisitive stage, when every other word out of their mouths is:
�Why?�
One evening, when we were driving home, he noticed the moon. Maybe I had pointed it out or brought it to his attention, I don�t remember for sure.
I used to sing a song my mother sang to us, when we were children:
Oh Mr. Moon, Moon
Bright and silvery moon
Oh won�t you please shine down on me?
Anyway, one of these times,
David noticed the moon.
He noticed that it followed us.
It kept following us:
No matter, how far we drove.
No matter, which way we turned.
No matter, where we were going.
It kept following us all the way home!
From that moment on, for years to come, and carrying on into his brother�s life, Mr. Moon has been a guardian watching over our family.
He follows us to school.
He follows us to the store.
He follows us to Grandma�s house.
He follows us to church.
He follows us on vacation.
He sits outside our windows.
He is always there.
To this day we look for Mr. Moon.
He has become a symbol to me
that God is always watching over us all.
Hope Returns....
As the door opened you looked at me
Actually looked
And saw
Your gaze was clear
Your mind was there
And the corner of your mouth smiled
A tiny smile
With mien of hope I reached to touch
Enfolding you within my arms
You hugged me back
With teen arms
With hands of strength
You gave comfort
To me
We played a game of cards
Mimicking life for you
You comprehended
Rules were not the enemy
We even talked
As playing
You won
Stilted conversation of give and take
Unpracticed yet a miracle
No screams
No threats
No hate
No animosity
Just calm
Posture open welcoming the world
Cage of paranoia disappeared
Questions tendered
Answers desired
Value inherent in feelings
Not your own
Empathy
I see fulfillment of colossal prayers
Augmented need lifted to a power
Greater than mine
Larger than yours
Generous in liberation
Benevolent
Giving back
Another chance
To dream
Last night we went to see David again. I had called to the nurse on his unit to ask how things were going, earlier in the day. He has been tired, and has taken several naps throughout the day. When we got there, he was interacting with other children. He looked up at me and actually had a look of being pleased to see me on his face!?! He was much clearer eyed, and responsive. His entire demeanor was more open.
David and I played a game of cards for a while. He was abelt o focus on the game and actually won all three hands. I spoke with him about his medication, how he was feeling, and asked how he felt. He told me he could not really tell, so I told him what I saw. I told him that he appears much calmer, more clearheaded, and open. I explained that I think that taking away the Geodon was the likely culprit for his behavior and hospitalization.
I can tell he is thinking more clearly as he was able to respond with a desire to just stay on the Geodon alone or with Klonopin. I explained, that the reason we began to make med cahnges in the first place, was because the Geodon was not containing his paranoia and irritability. Obviously this mediaction is doing much for him,but the addition of Clozaril, will hopefully address the symptoms Geodon does not address.
The entire visit Gene and I were there, there was not a single raised utterance, he made no homicidal threats, or threats of violence against staff. He did not call me any names, and though he was able to let us know he was unhappy about his continued stay, he was appropriate in his communication. This is a first since he was admitted, and he has only been on the Geodon for 36 hours.
I hope and pray this dramatic improvement continues. If it does, I plan to ask for him to return home before the weekend. We see his social Worker therapist tomorrow.
I think this hospitalization has put us one step closer toward stability for Daivd. We now KNOW that Geodon is a must on the medication treatment front for him.
God Bless,
There is always a light, no matter how dim, if only we seek to find it.
I know that you are sitting in that hospital alone
Afraid, and just so certain,
no one cares
Whenever you turn inward, you�re more and more convinced
That I must have hated you
to put you there
I startle from my dreaming with pictures of your face
Accusing me of causing
all your pain
You blame me for exposure to grievous threat of harm
Suffocating
as they held you down
The tears of accusation in your eyes awaken me
From resting
as experiencing your fear
I raise my heart toward heaven to make another plea
Entreating Jesus
to see his way clear
To exonerate my purpose and permit a view
Of comprehension
growing in your mind
Allowing empathy, and a possibility
That forgiveness may yet happen
given time
Please understand�
I Love You
Recently, I was asked by another parent of a MI child: How can we know that what we see from the decrease in meds is not withdrawl symptoms from drugging our kids for so long?
Actually this is a good question. I do have some thought that the Klonopin was potentially increasing David's agitation, but cannot be certain. I did not see the obvious, immediate negative reaction that Dalton had with this medication, but still the question is there. I think I saw it take a bit of the edge off when he was having a difficult time and I could get him to tak it, but again, the edge being taken off could just as likely have been the result of him having stepped away finally, and having some time to cool off.
For me with David, Dalton too for that matter, I have seen both boys without medication. It is a very scary picture. what We were seeing with David the past week, is essentially the same situation we had 18 monts ago when he first got to the point he was delusional and believed that "That man" (his father) was going to kill or hurt him. That his father had always been out to get him and would do anything to get rid of him. I can count the number of physical spankings on two hands and he is 17! Without medication, he is severely paranoid, and possibly due to the seizures he had when he was younger, we think there was some head injury involved which has resulted in an extreme concrete manner of thinking and a limited repetiore of coping mechanisms when he is overwhelmed or frustrated. His first option is to always respond in anger, then rage, then aggression. As he has gotten oldern and bigger, the consequences have grown as well.
How to know if this is "Him" or the result of coming off a medication? I am constantly evaluating, in my mind, comparing what was he like before the meds, to what was he like after the meds, to what is going on now. I know in the depths of my soul that unmedicated, my boy would likely not survive. I don't know that it would be suicide, but probably more likely, he would cross the line and hurt someone in his paranoid desire for self-protection. If this were to happen, he could be hurt in return or spend his life in circumstances I would never desire to see happen.
I know in my heart and soul that his illness is the truth for him. Yet, there may always be that frustrated, guilty, impotent mothering instinct which will question: Did I do something wrong? Did I miss something when he was younger? Am I making this worse? Why can't I comfort and help my boy? all I can say, is that my only salvation has been to talk about it with other parents who have been or are in the same place I am. Try to help hurting parents who are in darker places than I am, presently, and keep seeking the comfort of my perpetually tested faith in God.
Recently I was asked to define stability with regard to Bipolar illness:
When did we know he was stable?
How long did it take to reach?
How many medication trials did it take to get there?
What medications worked?
Stability is relative. I don't think there is any one way to measure what is stabile and what is not. It is a range of behavior, a range of treatment, a range of function, a lack of change.
For Dalton, I don't remember exactly how many medication trials we had to go through to reach the place when I began to consider the world stable as being a part of my vocabulary. I remember counting once, and I believe he had been on somewhere around 32 different medications. Some of these were tried in more than one combination, and when we finally began to see some levelling off of his symptomology, he was on five psychotoppic mediations and two non-psychotropic medications. Of the 32 or so medications he tied, over 1/3 resulted in severe adverse reactions, another third did almost nothing, and he ended up on many in combination, just to function... it has taken a combination of seven to eight prescription medcations from December 1998 until just recently, to maintain what we consider stability. He is still on three psychotropic meds and two others. We hope to be able to eliminate another of the psychotropic meds this summer.
The final piece of the puzzle to reach "Stability" for Dalton was adding Seroquel to his medications in December 1998. Prior to this, he was on Eskalith, Zyprexa, Tenex, Topamax and Synthyroid. Even so the one remaining issue which kept making his life a living hell, day to day was the severe level of psychotic anxiety. he would scream and rage, cry and fight, every single night for 45 minutes to over two hours at bedtime. I think this was a combination of night terrors, PTSD, and who knows what all... He would freak out if I touched and tried to hold to comfort him, then freaked out more if I tried to leave the room. Severe separation axniety, but even more severe fear of me. We played "Don't touch me...Don't leave me..." every night for over two years.
Seroquel stopped this behavior in it's tracks within less than two weeks. It was from this point that Dalton was able to sleep, at times, alone in his room, all night. He began to go poop on the toilet occasionally for the first time ever. He began to slowly begin to show the ability to think in advance of actions. He even managed to begin to ask to go to bed, to tell us he was tired, and would we tuck him in?
Dalton still has certain symptoms which will never disappear. He is impulsive, oppositional, defiant, mouthy, hyperactive, and appears to exist in an almost perpetual state of hypomania. These symtoms wax and wane depending on the time of year, the stress and transitions in his life, and ebb and flow like the waves at sea. However, as time has continued to pass, the severity of his mood swings has lessened dramatically each year, and we know how to manage his medications, making adjustments to his Seroquel and Lithium as needed. Up and down, back and forth, it is a dance. Spring, summer and Fall and Christmas are the forseeable times when we know he will have fluctuations in his functioning. As time has moved on, we have become knowledgeable of his illness and medications so that we can usually minimize his more difficult times to a period of a few weeks.
I remember praying a hymn of supplication
Underneath a yearning to adore
Seeking for fulfillment within the blessed treasure
Contained within a presence not yet born
I remember feeling the flutter of your kicking
Underneath my ribcage as you moved
And standing in a doorway as you stretched your wings
Reaching for my heart within your room
I remember walking in the sunshine softly speaking
Underneath my breath into your soul
Whispering aspirations of anticipation
Looking toward the instant you came forth
I remember smiling at daydreams of your future
Underneath a universe of faith
Joyful in the knowledge of your presence growing
Quietly communicating strength
I remember holding your precious tiny fingers
Underneath an atmosphere of dreams
Arrested by your beauty I breathed a gentle greeting
As I counted digits on you feet
I remember hearing a silent celebration
Underneath the passing of my fear
Gazing up in wonder when placed upon my breast
Finally understanding why I�m here
I remember praying a hymn of gratitude
Underneath the yielding of my soul
A song of dedication committing all you were
Into the safe embraces of our Lord
I remember...
Sitting here this morning, washed in remembrance of the joy and awe I felt with expecting and having given birth to David. No matter how much pain and hurt this illness may cause, he is and will always be my blessing.
This evening, as I told David earlier today, I did not go to visit. I will plan to do so tomorrow. However, Gene decided to stop on his way home from work. He told David to grab his cards and they played Rummy.
This was the first visit since he went into the hospital that was not totally focused on homicidal threats against the staff, if we did not take him home, or for something they said or did! Gene called me on his cell and Dalton talked to me a bit. Again the first time he was "Almost" pleasant. he seemed a bit clearer. he did saiy he had been given Geodon, and I believe they raised his Clozaril as well. the nurse on duty told Gene it was ok to let David say hello to Dalton. That is about all they said, but they seemed to enjoy doing so.
Hopefully, this is a sign of quick reaction to the medication, quick recovery, and home soon.
I hope this message finds a light in any lives of those who read it. There is hope. God bless.
There is always a light, no matter howdim, if only we seek to find it.
My tears create an ocean from tidal waves of fear
The pounding in my brain, storms turbulent
Floods diverting care well up from my soul
And flames of incensed violence seethe unspent
Lost within my seas and floundering on my own
In pools of fiery waterfalls of pain
I drown in agony and weep into the void
Afraid that I will never rise again
I float, immersed within my frightened world
And wallowing in acid streams of grief
Finally, I raise my eyes to spy a radiance
Whose warming rays can drain the deepest seas
Chagrined, I had forgotten that I am not alone
Unless I turn my glance to look within
Life was never meant to be free from hurt or sting
And I was never meant to strive alone
My purpose here may not be clear at times
But when I keep my view aimed toward the Lord
I know I can depend upon his mighty strength
To rescue me within my darkest hour
We did meet with David's SW and I did get to meet and talk with the pdoc while we were there, before we spoke with David.
Going over the meds he is on, doses (WAY TOO LOW) and what he has been on in the past. We discussed dx, and meds with the pdoc.
Looking back: just over a month ago, after David had been on the Risperdal for 3 weeks or so, the pdoc had me stop the Geodon. About a week or more later, he was more agitated and getting more so.... We saw the pdoc, and he added the Klonopin. After David was on this for almost 3weeks, he was still getting more agitated and paranoid. We had the emer calll to the weekend line when david threatened to use a knife to protect himself and/or throw himself out the window to protect himself and hurt me... on a Sun.
That thursday, the pdoc doubled the Risperdal, and raised the Klonopin. It was the following Tuesday he was admitted.
Upon reflection, I think taking away the Geodon did more harm than anything, and I wonder if the Klonopin is aggravating his aggression? although the Geodon was not containing Davids paranoia and aggression, it was very obviously covering negative symptoms and mood and keeping som lid on the other.
After talking to the hosp pdoc, they are stopping the Risperdal and klonopin Immediately! Also stopped the Saizen (Growth hormone) as well. We were going to stop the hormone in another 3 weeks anyway to retest and check the need to continue it.
He said he would push a high dose Geodon immediately, and push the clozaril faster. Right now only on 25mg. He says he should be able to have up to 100mg by Friday.
I pray this works. The admit nurse asked me what he looked like unmedicated, I think they have their answer.
I pray this works. David hates me, blames me, and I can only pray he forgives me when things settle down
I called to check in and talk to David last evening, since we agreed that it would be best not to visit in person after his afternoon. The nurse said he was calmer, still upset. David was demanding that I commit to taking him home today, I could not do so, the call ended with him telling me to "F" off, and he hung up. He had also told me that no one would ever touch him with a needle again. He said the haldol made him hurt all over. I told him that he needs to talk with the doc about his reaction, maybe they can give something else in a crisis, if needed. I called back to talk with the nurse as I was concerned that this is the first time he was told this in no uncertain terms. I was told that they had told David Saturday that if he had severe outbursts that it was unlikely that hewould go home.
When I spoke with the nurse prior to talking to David, she was asking me if, and why hadn't David ever been long term care? I tried to explain that until recently, he did not exhibit this level of aggression. I was able to deal with it at home. This is the FIRST time he has ever bee this out of control in front of anyone else but us. She was questioning his diagnosis. That the level of aggression is unusual for schizophrenia. She was telling me that his pattern of paranoia and explosiveness is different from "Normal" SZ they have treated. I was told that most SZ patients when paranoid, tend to pace, get fearful, and isolate themselves. David gets paranoid, angry, and will fight his position to the death verbally. Problem is that he is crossing the line to homicidal threats and one step shy of follow-through. I did mention that we had been concerned that part of his explosiveness might be related to a possible head injury from all teh seizures he had prior to 5 years old?
My biggest concern during David's hospitalization, is about proper dx and correct treatment. We thought about mood disorder for David long before we heard the SZ dx. primarily because of the rage. Problem is, none of the mood stabilizing meds seem to cover????? his symptoms. We've tried Depakote, and Topamax, and Carbatrol, and Zonegran, and Lithium (although not a high dose of this one).
David has NEVER been even close to MANIC. depressed, upset, raging, volatile, but NEVER manic.
I thought for a bipolar dx there had to be some portion of hypomania or mania.....?
I got a call last night at 9:30, they had David in four point restraints, he was given another shot of Haldol, he got extremely upset after he realized he would not be coming home today, and lost it. Security had to "Take him down" for his safety.
I was told by the nurse that they are now working on a DX of IED. He was diagnosed with this by our pdoc back in MO before we moved, and prior to the schizophrenia dx.
A big concern I have at this point, is that he is still getting 1mg clonopin bid, with another 1.5mg at noon. They have reduced his Risperdal to 2mg, and he is only up to 25mg bid of clozaril. Essentially he is pretty much unmedicated! I was told by the nurse on duty last night, that they usually go "Slow and Easy" with meds, but he needs something NOW! We see his SW and supposed to have communication with the pdoc today at 10am. I cant protect my baby, I don't know how to help him. But I will insist that they be more aggressive in their efforts to try!
I travel looking back on favorite memories,
And often see your eyes there looking back at me.
It wasn�t long ago when you were small enough
To lay upon my chest to drift and dream.
Petal soft and smiling in your innocence,
I listened to your heart next to my own.
The peace I felt was heaven sent, and to my life,
Your spirit was the piece that made mine whole.
You grew and learned to run, yet still turned back to me,
Seeking firm foundation in my face.
Reflected smiles of warmth were seen, and off you flew,
Days passed by existing there in grace.
Remember when you went to school to take control,
And all the world was there at your command?
Fearless in your confidence you traveled paths
And navigated dunes of shifting sand.
Step by step, as sentinel, I stood aside,
And as you soared I helped you take to wing.
All the smiles and grins, and rumbled laughs I�d hear
Were answers, the fulfillment of my dreams.
Sitting here I�m saturated by your pain,
Unable to relieve you from torment.
And lifting my eyes heavenward am comforted,
By the power of your memories heaven sent .
Believing in the power of faith, I know that you
Will soon return to me, and be made new.
The purpose for your suffering I don�t yet see,
But with my soul I know we�ll make it thru.
You�re not alone at any time, for he sustains
With living water, washing tenderly,
Inundating waterfalls of gentleness�
Sustenance is offered for belief.
I spent pretty much the entire church service in tears this morning. Couldn't sing, hard to smile, and begging for prayers. The message was based on the scripture
Romans 8:28 and we know in all thinge God works for the good of those who love him, who have been called according to his purpose.
It's very difficult for me to see how David's illness can be used in his or my life for good and a purpose, but I have to find the faith to believe. God forgive my unbelief....
I'm not as uncontrolled now, just still feeling the after effects of swollen, painful eyes. Gene took Dalton swimming to give me a break.
I called the hospital a bit after noon today to see if David was doing any better. We were trying to determine if we should visit this evening, given his agitation and paranoia last night. I was told he was clearer headed, but to call back about 3 to check again.
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I just got off the phone with the nurse, evidently, David is in the seclusion room alone, they had to administer a shot of haldol. He had a plan and was telling them exactly what he was going to do to whom, how he was going to do it, and was extremely threatening. They had to call security. Thank God, he chose to walk to the seclusion room and take the medication, so he is not in restraints... Needless to say we will be calling to see if he is calm enough to talk this evening, but will not be visiting.
My question is: Is it normal for people with Schizophrenia to have a certain time of day when the lose it?!? David typically holds it together at school, then has a difficult time in the afternoon and evening. He gets home around 3pm. The nurse said he had been doing well today, playing card and talking to a female patient until right at 3pm he just wigged out, for no apparent reason. I asked if this has been true the past couple days as well. Pretty good in am, then Boom! in the afternoon? she said yes.
I asked her to talk with the pdoc about adjusting his dosing times to accommodate for this....
David got very agitated and threatening, had a plan, was telling the staff exactly what he was going to do, how he was going to do it, then began to make moves..... They called security and he chose to walk with the security, thank God! but he is in seclusion and they gave a shot of Haldol......
We will not be visiting tonight. Hopefull he will be calm enough to take a phone call later.
I know I'm not to blame, but the feelings are still there, this devastating illness will not allow me to comfort my child.
Blame�
My agony is locked away,
and guilty in my peace.
My heart burns with flames
of nourished rage and dread
Being eaten from within ,
my soul craves sympathy
Yet with myself
I cannot empathize
Pain resides inside my mind,
and in my dreams, I torture find
Unrelentingly
consigning my reward
For I cannot understand his fear,
still I chose to place him there
And though he�s safe,
he hates me, all the more
Entreating every moment,
hoping someday to appease
His anger at intruding
when he understood no need
I close the windows of my world
and drift beseeching Lord
Alleviate his anguished
veiled fears
We just got home from the hospital. It is very apparent that David will NOT be coming home in the next couple days. he is awake, very agitated, and making homicidal threats against the adults on the unit, for their being against him, for me not taking him home, ....
I spoke with the nurse on duty she got hold of the doc on call, and they will reduce his Risperdal another 1mg, and increase his clozaril from 25mg am, to 25mg bid. They also will give him 100mg Trazadone at bed, instead of the 50 he has been taking. He told me he is very tired, but could not sleep.
I can only imagine how upset he is going to be when Mon rolls around, and he realizes he will not be coming home... Even though we were very careful not to imply he would be doing so, it was phrased as a possibiliy to him that possibly early this next week. Unless there is a miraculous change overnight, I can't see it.
Keep the prayers coming! My head knows he is in the right place. I thank God we were able to get him there before he crossed that final line of hurting someone, but my heart just doesn't understand....
God Bless and keep us all,
I would like to say I know this will pass. However, I hope and pray that it will. Just seeing David so drugged looking, sedated, last night... I hate medication side effects!
David was pretty doped up last evening. Very tired. They woke him for dinner about the time we got there. I sat with him while he ate, but he was so groggy, I got him something to drink, and napkins, etc.... he simply forgot. Gene went in after David finished eating, and he only stayed another 10 min or so. David was just too sedated, staring off into space. He barely acknowledged we were there. I think this is pretty normal with a new medication. Hopefully, the sedation will wear off quickly. they did cut his risperdal dose by half, so I think they are titrating that down as the Clozaril is titrating up...
Dalton is doing pretty well, he misses David, but I have often said, repeatedly to him through the years, that if you cannot be safe to yourself and others, you may have to be hospitalized. Even though he was only in the hospital once since he came to us, when he was 4years old, he remembers enough to place this in context. Even though the hospital policy is no siblings, Since Gene and i are both visiting, Dalton is at the door and has been able to wave and say hi when we switch out. He knows David is safe.
The social worker sounded like he might be able to come home early next week if the Clozaril is going well and the severe irritability has lessened... then we would follow up with his OP docs. I can handle routine stuff, it is only the severe aggression, homicidal threats, and physical follow-through. If this can be contained quickly, we can deal with the rest at home.
Catatonic�
Here he sits,
glassy eyed,
gazing into space with nothing there.
Expressionless and passionless,
lacking liveliness to care.
Seemingly, he has no pain,
but I possess a plentitude for both.
His mind is buried deep within,
a cavernous,
imprisoned,
blinded soul.
How is it best to medicate
until his windows' radiance is black?
To calm his hurt, our only thought,
we question how to ever bring him back.
Pills of peace transformed our boy
to an anonymous automaton.
Which is best, and what is worst?
His brain to rage,
or empty shell,
soul flown?
It isn�t fair!
It isn�t right!
Who made the plan to steal my baby boy?
For all my wailed, despairing thoughts,
he�s the one unable to feel joy.
My heart cries out in agony
shattering and screaming in the gloom.
Although surrounded by our love,
here he sits,
isolate,
entombed.