Saturday, October 24, 2015

Captain's Log Stardate Day 22

 Captain's Log, Star-Date Day 22:

Today had it's ups and downs, the same as every day this week. The boy child in sickbay has been gnawing on his healed arm today. There seems to be an issue with his meds. After all, he went two weeks with his hurt arm in a cast and not once did he touch this other arm until yesterday. Today his hand was swollen to what the nurse has deemed "Puffy Monster Hand". After an investigation, we (Tyler the RN and I ) have determined it to be a compression issue. We feel we resolved this issue with Tyler's manly scissors just cut all the compression sleeves off. We put on a new Posey sleeve with thumb hole and a velcro IV cover on Puffy Monster Hand.
Still the boy child feels compelled to scrape his teeth on it. So difficult to watch him go from happy to manic and do nothing.  I told Tyler I'm convinced it's some med that is missing that keeps him from doing OCD/manic behaviors. He is not exhibiting these behaviors in the mornings. Being the Captain and not being able to make things better is not a good feeling.

Also today, the Lord has made his presence known to me. I always feel him near but today he used others to show himself.  I needed this encouragement, and show of strength to gird  up my loins for the fight I know is coming ahead of me. 

Today's first patient sitter for the boychild was an older lady with a gravely voice. Her name was Willie. Same as a lot of the times, after a bit of time in the room with us, questions are asked.
She wanted to see pictures. Willie gasped. I told her about my year of trying to get Oklahoma to be willing to send him to Texas. And now that they are, but Texas is rightly upset with Oklahoma and not interested in playing ball.
I told her my tentative plan to threaten to sue them so they'll somehow make Texas work to shut me up. Turns out Willie's best friend was in an abusive relationship and couldn't get back into her home once she left, to get her work clothes. Willie's apparently spunky because when she called police and they said they couldn't help, she called Senator Tom Coburn's office and demanded help.
Willie ended up with a police escort down the highway to her friends house to get her clothes within 3 hours. Oh and the checkbook.
Also, Willie's mom is 91 years old and in a nursing home. She fell and hurt her knee. A few days later when Willie checked on her she could tell it was bad and took her to the ER.
Her mother's knee cap was broken and is permanently damaged. Willie demanded the nurse tech be fired who had called to tell her about the fall but never reported it to the RN.
The facility fired him but Willie went further to the Governor and made sure his license was revoked. Spunky.
Willie said I needed to take this to the press and to the state capital and get the governor involved. I'm thinking this is sounding good. This could be why God set all this up last year in early December when I went to the capital.

Patient Companion number two was Allen. Just like my dad's name. And his last name was my grandfather's name. I think I can remember that.
He stared a lot. I talk to the boy child almost non-stop as I feed, clothe and change him. I'm sure to some people it's odd. But if it was me, I wouldn't want to be ignored and I cannot know if the sitters speak to him after I leave.
After I feed the boy child some lasagna I brought from home, I am telling him about the wonderful lady from church who made it. Telling him about her, and how I've known her my whole life.
How kind she was to make us food and bring it so I can be with him all day every day.
Allen asks what church I go to. Turns out he goes to Park Plaza in Tulsa. Small world.
The lord allowed me tonight to leave the boy child in the hands of fellow brother in Christ so I could go home and make a Halloween costume and feel he was in good hands.

Tuesday, October 13, 2015

"Exhibit A Your Honor"

Back at the hospital I'll give you a Pwrry Mason version.
Court was so empty today and it's usually all Jerry Springer-ish, so that should have been my first clue something was up.
Apparently they weren't even starting until 2:30pm--we were scheduled for 1:30. We were 30th on the docket and they were starting at number 18. 
Our lawyer says he has an emergency hearing in Claremore and has to leave. I'm sorry, WHAT?!
So he handed us over to a lady in a pink shirt who I already saw trying to "help" another family in a not so inspiring way. Luckily, our lawyer told her to "just unleash her" & let me do the talking. 

The DHS worker came in--said the meeting yesterday (that I chose not to attend--I felt it would be doing their jobs for them--again. And also allow them to think I was okay with how things transpired--which I am most certainly not.
She said out of state was not even brought up.
And they asked---wait for it--IF HE COULD JUST GO HOME NOW.
Umm no. They are really stumped. Someone may actually have to leave an office and DO THEIR JOB.

We ran into Carson's attorney. I had emailed him with my attorney with a full & complete update on Sunday evening. Complete with a couple of pictures. 
I think those made it to the Mon meeting I skipped. 
I told him we were 30th on the docket and perhaps he could throw his weight around to get us bumped up--then I flashed a big smile--I've been told that helps.
And I guess it does--we went first. Dimples for the win!

The judge started off saying, "We thought Rose Rock was bad..."
I asked if she'd like to see my pictures she said no quite emphatically.  I had made copies and sorted them but no ziplocks at court so all attorneys and DHS worker got theirs in handy dandy Bio Hazard baggies from the hospital. 
At first I was truly worried she didn't want to see them--but she said the lawyers had forwarded on my email & pictures.
I was perfectly content knowing I had gotten my main concerns across in that email.
We discussed hus meds and adjustments--she was very interested in that aspect.
The judge mentioned the ambulance and Carson being alone and it was dead silent. Then she huffed, "ABSURD!"
More silence. She was not in a mood to be trifled with today. 
I quietly shook my head and said, "Same." (Well I didn't really but in my head I did.)
We discussed the EXCELLENT care he was recieving at St Francis Childrens and how as horrible as this was, it may benefit Carson in untold ways.

She went on to ask if OCC was involved--it wasn't--it is now. She wanted to "make it OCC wide". 
Carson's attorney asked if we could note the judge's disapproval--she didn't answer.
The judge worried outloud that out of state care would be harder to monitor his care/health.
I let that sit & then assured her I had enough family and friends that that would not be an issue.
I told her programs & opportunities I was looking at for my senior in high school, that would keep me interested in Texas for more than occasional visits.
She asked if the meeting yesterday addressed out of state--no. "Of course not" she said with disgust.
Judge turns to Carson's attorney and says, "I'll allow my disapproval noted on placement."
I'll have to have my lawyer friends verse us in how much weight that carries, but she said it with authority and pencils moved rapidly.

She wondered what places are available in Texas. I left that to sit and quietly but then pointedly started listing them & where I had been. 
She said, " I hate to put you to work, but you can look into that for me." 
I assured her it was my job as his mom  and my pleasure. 
She set a court date for January and  we adjourned. 
Done & doner. Pink shirt never said a word but thank you & was practically running to keep up with me as we left the courtroom. We got out in the hall
and she said, "He was right--you did great!"
Thanks Pink Shirt. 

Friday, October 09, 2015

Just The Facts M'am

It's been a long 6 days. So if I'm repeating myself--skip down.
The facts:
Carson was transported by ambulance an hour away, to the St. Francis Children's
hospital Saturday night. He was in only a t-shirt and no socks or shoes.
He woke up at the hospital terrified, restrained to a bed.
The staff was only told by the ambulance that he had been dropped off at a group
home 2 months ago. That was all they knew.
The staff didn't know ANYTHING about him. If he could speak, swallow or what he
was there for.
They inspected him from head to toe finding bruises, sores and of course his arm
which was a place the size of small remote control to a TV. It was one third black, dead skin.
He woke up to find about 6-8 people/security in his room and popped his restraints
from the bed.
They got him in the tub but he was scared of everyone and sat in the corner crying &
screaming. Which happened to also be on the stopper so they couldn't drain the tub so it flooded the entire bathroom & up to their knees in the room.
The hospital staff got a Posey bed for him in under 30 mins after fighting him for so
They held him down, got an IV in for antibiotics & severe dehydration--he blew a vein
in the first one---second one had to have 2 velcro covers and someone to hold his arm
still while he had the 1 hr treatment every 6 hrs. (Monday he ripped that out & his wounds started to re hydrate which was not fun---but his proteins were low and he was pretty dehydrated so he is eating some & drinking which is good.)
I was out of state and didn't know he was alone until late Sat evening. I arrived Sun
morning before he ever woke up. Apparently, staff thinks he's a different kid now.

More facts:
God is very good. This is a horrible situation but it's being handled by THE best people
in the world.
Carson arrived at shift change when extra staff were there. As scary as that probably
was to him to be surrounded by strangers, alone, it was a blessing.
Carson & I have a few favorites now. And Carson is DEFINITELY the favorite on his
He has had a "Patient Companion" since he arrived who sits in the room & is never
allowed to leave without some other staff  there.
God has blessed Carson & I with an array of amazing sitters/companions who have
heard Carson's story and prayed for us, been touched by him and have asked to come
back to be with us.

The Child Life Specialist told her mom about Carson and she mailed him mardi gras
beads--he IS topless most of the time. The therapists and staff have all brought Carson
toys, treats and always come in asking if they can bring something special in for him.
And no offense to your friends, but mine are pretty dang special. They have taken care
of me quite well. A scarf to keep warm--some tea to keep my hydrated--all kinds of treats & snacks for Carson--Aquaphor for his severely chapped/dehydrated lips--
stuffed animals for him--bringing me food to try  and eat, stuff from home and just
loving on the two of us. I don't know that I'd be sane on day 6 without all that.
The MANY doctors and specialists I've been working with while up there are amazing
& care sooooo much for my son. They are going above & beyond. They are very
protective now of Carson. Once I was there, they saw the situation for what it was
and have been protective of me too. I'll take it!!!

They are angry like I am---they want him in Texas like I do--and they are fine with
keeping him here as long as need be.
DHS & Tahlequah kept texting me and calling. I refused to answer. I did not have time
for that. I have literally barely sat down.
And my momma taught me if you don't have anything nice to say, you shouldn't say
anything at all. And so far all I can think of are four letters words. So I have chosen to
remain silent.
They know where he is. They can come.
NO ONE came until Mon when his therapist from Tahlequah came and tried to warn
me about Carson as I was leaning in the bed trying to give him meds.
"M'am, step back! He is dangerous, don't get so close! I wouldn't do that!"
I just looked at him. The other 6 people in the room knew who I was. If I'd had the
energy to laugh, I would have.

But he later brought good info to the table with some stuff for Carson to try---saying
the biting even though started by another kid, has now become a sensory thing for Carson and that we have to figure THAT out to keep this from being repeated.
In turn, I showed him gross pictures of the arm and told him he could tell Tahlequah
Carson came in with lice. I felt this was a fair trade off. He called everyone from the
parking lot and Tues morning Carson's DHS worker showed up to see him.
I made her look at the pictures. (Wound dr has never seen anything so bad on a kid)
I told her I was pretty sure I could sue if I wanted to. That you wouldn't send a verbal
15 yr old who tried to commit suicide in an ambulance by themselves and say "Tell
them your medical history when you get there & what's going on." Umm no.

THEN, Wed morning, a social services investigator came to interview me. An official "on
the record" recording while  I sent her all the pictures I had from Sunday & she took
some new ones as well. She was outraged and said the only way he'd go back was
with one on one care. But I'm pretty sure OK has exhausted all it's resources.
I don't know how this isn't proving they have nothing here for him here.
As much as I feel like Tahlequah said ahead of time they didn't think it'd work & I did
as well---this is UNACCEPTABLE. I had been there 2 weeks before---how did this
happen so quickly unless you didn't bathe or touch him for those 2 weeks?!
As sad his condition is, I can't imagine this not helping his case for moving out of state.
I'm pretty sure being in the hospital for more than a week is expensive.
If I sue you---pretty sure THAT is expensive. You should have just moved him when I
asked nicely.

The wound specialist really has had to bring in other people and be creative with
healing Carson's arm.
We are NOT doing surgery now, the dead skin is off. I will spare you the Zombie like
details of how that happened. The skin underneath is pink and has good blood flow.
The doctors want to stress him as little as possible. They came in Wed and made a cast
of his arm, (while he was semi-sedated) and then cut it off and sent it across the west
coast to make a mold of it. It will be a silicone sleeve that will fit over this large Mepilex
dressing/band aid which has silver in it to speed healing. Then some Houdini straps. I 
have discussed several options with the doctors---maybe an elbow stabilizer on the
OTHER arm to keep him from removing all the bandages etc.
Still needs to be changed once a week.

Yesterday OT came in and put a patch on and then a special compression bandage
that is designed to sort of help autistic kids.  (lessons in autism 201 coming soon)
He has been keeping his arm wrapped in a shirt, towel or blanket.
The drs and I are finding he LIKES the compression. He left it all on for 3 hrs yesterday
and so I'm hoping that's a good sign of things to come.
He loves his Posey bed. Google it. Again--that's explained in autism 201.
He loves Nutter Butters--we've had quite a few incidents where he has escaped the
bed and grabbed a big bag only to fend me off  in a corner while he ate the entire

I've gone home bloody a few times. That made for interesting walks to the parking lot
late night. I've only left 3 times, but that has to change soon because the other two
are crying for me (mostly Jack) and we go to court Tuesday.
I'm the only one who has fed him a meal yet.
I just missed giving him his meds for the first time last night---and let me tell you he is
on A LOT of meds.  The head of psych is personally on a mission to fix that for him.
She said there are only so many landing strips in the brain---his have multiple stacked
planes waiting for take off doing him no good at all. People have thrown new meds at
the problem only to create a traffic jam for his brain.
I'm sure I'm missing some stuff but that's those are the main things going on.

I have to go email my lawyer but if you have specific prayers---pray he allows ALL his
injuries all over to heal. (He has pressure ulcer/wounds too)
Ask that he keeps feeling safe where he is & I keep meeting great doctors that care and are continued to be intrigued by Carson.
Pray for court. Pray something new happens for him.
I don't know how much longer I can do the hospital routine of being there all day till dark, but I want to.
I have my vitamins, blood pressure pills and unsweet tea. I'm surviving. We won't talk about how messy my house is, but I can do survival mode, I've been there before. I know how to do this.
Just call me Rambo.

Thursday, September 17, 2015

Messy Hair, Messy Life

                                         50 days since I have seen my favorite 15 year old.
In those 50 days Tahlequah has stopped some meds, and started others. Some I don't agree with at all--like the drug they give alcoholics so if they drink they'll vomit. He has sent FIVE of their staff to the hospital. Yes five. Carson has been to the ER three times.He's been banned from the psychiatrist's office. Tahlequah has put up two staff in hotels for extended periods of time to bring in extra staffing. That's a lot for them and for him in 50 days.
So today, this is how I found my baby.
Barefoot, outside, swinging like he loves. But he was so sad.
He hadn't had a shower. He had messy, greasy hair & his shirt was inside out.
This is how he greeted me.
He is my "we". We are so tired. We are so tired of fighting everyone. We are so tired of being in survival mode. And we are so very tired of the stress of not being able to fix this.

Change is hard even under the best of circumstances.  I explained to Son#1 like this:
It has taken you (Jack) almost 30 days since starting school to be okay with your schedule, new teachers/aides, new classroom, new bus driver & route.
Carson has been in Tahlequah 50 days. After being at RoseRock almost 1,095 days/3yrs.
This is a new place, new people, new routine, new rules, new schedule and new room.
I hate that it's taking Car-Car this long to settle down, but I don't think we can say that's ridiculous.

When you can't tell someone you have a headache, there's a smell you don't like, that your elbow hurts--don't touch you there, that you're scared or you don't want to eat fish sticks--you want Whataburger---there's gonna be frustration at your lack of control.  And it's going to manifest itself in a variety of ways. A lot of them not-so-pretty ways.

Just when I think as a mom that there can't possibly be many more of these Mt.Olympus sized hurdles left, there are.
This one is waiting for him to find his rhythm and settle into the newness of it all. With my hands tied. Waiting. Without a true direction to turn towards other than my faith. Waiting for when I hear the direction I need to be moving.

I've lost my sense of direction in this fight. Just trying to survive day-to-day and not think about my lack of control. I am quite aware and have been for some time that I have no real control & I'm usually fine with that. It's why I can seem so removed.
However, right now, my lack of participation is wearing on me. I'm a do-er. I don't sit and I don't dawdle. With school starting and the slew of other normal people issues, I am floating in my boat and I can't hear much over the loud waves. I'm slowly regaining my focus. It's taken a lot. Six days without leaving the house. Letting myself not answer the phone or texts when I just don't have the energy to deal with anyone elses stuff other than my own. To just concentrate on taking care of the brothers.  And me. I have benched myself. Trying to rest The Julie. Trying to take care of me a little more, so that I can come back & fight another day.  It's what Carson and I both need---rest.

Wednesday, September 16, 2015

Aunt Grandma Betty

I'm going to start with the obvious--our family has some extremely strong women in it--if you know us, that's probably not a surprise. Today I get to tell you about one of the special ones, who I feel blessed to say, contributed to who I am today.

It just so happened, lucky enough for me, God placed me in the same family as Betty Casey Stafford. My beginning with this family began in her house & I have felt at home every visit since. Whether it was sitting around the table for holidays or scattered around the fireplace to visit with all my cousins.

She made me my first doll--Raggedy Ann--which prompted me to request a Raggedy Andy. And I got it. Mine was the first Christmas stocking she knit to start the tradition for the grandkids. She came to see me sing in college at Spring Sing. And she helped me recover my couch & chair when I got married.

I have fond memories of all of us sitting on the board in the haircut chair with our heads in the shampoo bowl and her smiling/laughing down at us. And every time any of us slept over, we knew she was going to let us have a bowl of ice cream at the end of the night before bed.

Aunt Betty never missed sending me a birthday card, and even mailed me a card when I was baptised where she wrote about how proud she was of me.
I got to work at her shops in the summer when I would come to stay.

That's probably my favorite time I spent with her. Just the two of us. We'd ALWAYS start our day with a bowl of Honeynut Cheerios, head to the shop and at lunch, we ALWAYS had a Dr. Pepper & she ALWAYS had her Bible. She'd take it out & read to herself while we ate our lunch.

It takes a strong woman with an even stronger faith to push through life when there are heart aches like loosing parents & children. Aunt Betty had that fortitude. She was able to do the hard things, like telling me what she thought God expected from me and what was right & wrong. And I don't think she would had done all of that if she didn't love me. She could say one word, "Well..."  And you knew she expected you to do the right thing.
That's love. It's more than just the "I love yous".

It's amazing to me how often a heart can break & how many pieces it's composed of.
My Aunt Betty was a Casey AND a Stafford. Those are two families that have generations of loving, family oriented, strong minded women. That gave her an extra large heart, for her extra large family. I know without a doubt she was extremely proud of every single one of us that were lucky enough to be part of that circle.

Tuesday, September 15, 2015


 James 1:5-8
 "If any of you lacks wisdom, he should ask God, who gives generously to all without
finding fault, and it will be given to him.
 But when he asks, he must believe and not doubt, because he who doubts is like a
wave of the sea, blown and tossed by the wind.

 (Doesn't doubt feel like that??? You get seasick!)
 That man should not think he will receive anything from the Lord;
 he is a double-minded man, unstable in all he does. "

To me Doubt is a rebellious boy child that sometimes gets out of hand--it's opposite and
perfect little sister, is faith.
There are points in our life when our faith is strong, and we believe without a doubt.
Everything is going peachy. No need to doubt or worry--all is well!
But then we also have times where doubt creeps in, and we cry out to the Lord to
“help our unbelief"--like the New Testament father who's child was possessed by the evil spirit.
 Don't we find the doubt creeps in when we feel overwhelmed, and have begun to
assume WE will be the solution to all our own problems? When is God going to fix this?
When will this be over?

We get too busy worrying ( the cousin to Doubt) that we forget where we put our faith.
 The good news is that God answers prayers, and He is waiting to reward our faith. In
fact, He commands us to "not doubt, but believe," because He knows how much more
abundant our lives will be when we are full of faith.
God created us with free will. With the purpose being that we choose to serve him
not because He commanded us to, but because we wanted to.
As a Christian you choose each & every new day, to believe in God and that Jesus is
His Son.
And you choose every day, how much of your life you will GIVE to them, as they ask.
That is choosing to doubt whether or not God can handle your "stuff" or if you think
you've got it all under control.

A friend once taught me a very important lesson. She said sometimes we have to allow
others to help us, not for ourselves, but so they can serve God.  My pride & I have tried
to remember that. Sometimes it's not about us.
The apostle Paul’s prayer and desire for Christians everywhere was that their lives
would be full of prayer and worship, so that there is no room for wrath or doubting.
Both of those are opposite to God’s will for his children. His heart for us is that we
would be faith-filled worshippers that are passionate for our God and King, because
He knows that we will then have the capacity to live abundant, joyous, and purposeful

I want to share something that has given & continues to give me great comfort. It may
be nothing new in thought to you, but I have taken great strength from it myself.
Sometimes it doesn't feel right to admit we doubt. Seems a wrong or difficult thing for
Christians to admit to. I mean, we're perfect coming up out of the water after baptism
right? We'll never doubt again!
Jesus was human. We know we are to use him as example of human emotions he too
has felt just like us! Jesus was sorrowful to the point of death in the Garden after the
Last Supper. Think about that.
This perfect human explains to his closest friends, as much as he can of what he's
going to be going through, and he prays for them and with them. He is exhausted and
goes for a moment alone with His father. He is feeling overwhelming sadness and
anguish. And in his talk with his Father, he doubts God's plan for Him.
He does! He says if there's any way, let this cup pass from me.
He did not want to go through with God's plan. Is there any other way? Are you sure
Father?  We don't have a plan B on the books?? Please?

But He knew there wasn't. Yet he asked anyway. It's okay to ask God if there's another
way. It is okay. As long as we go to our Father & fellow brothers and  sisters in Christ
and restructure our faith.
God our Father gave us free will---and wants us daily to choose with that free will, to
take up our own cross daily---and follow Him. To cast our doubts aside.
Sometimes we need a day or two to cope with our doubt. That's perfectly fine. Just
don't unpack and live there.
We as Christians need to feel comfortable enough to express our doubts to one
another. Allow and let other Christians  help us build our faith back up.  And hopefully
make us turn to God.  We can help ourselves by staying in the Word so we can hear
the Holy Spirit when it's guiding us. And reach out to keep reaffirming. There's nothing
wrong with doubt that faith in God can't fix.

1 Peter 5:7-9
"Cast all your anxiety on him because he cares for you.
 Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion
looking for someone to devour.  Resist him, standing firm in the faith, because you
know that your brothers throughout the world are undergoing the same kind of

Wednesday, July 29, 2015

Updating of the Update-DAY 6

The Greenhorn DHS worker called and apparently DHS/Child Welfare and DDSD had another conference call with the head of People Inc. Without all the in-between people BUT with a mediator/liaison. Perhaps a new ally.  I am going to have his information by the end of the day today.

They have assured me that Tahlequah have agreed to give son#2 a little while longer to adjust. And will keep him for a bit longer to see if these new meds will even out his behavior so he can exist there peacefully. The Marine & Mrs. Garrett will shift out more often than usual to try and alleviate the uprising of mutiny.

I was happily surprised to learn that DHS/DDSD & Child Welfare were all on the same page as I was, that the previous teleconference call was very one sided. Mutiny was heard, our side was not.
We discussed Tahlequah's "hands-off" approach to the kids. I said  I loved this since we were coming from such a handsy place like RR. However, having been in this position myself, you will have to use your hands to defend yourself & to protect Carson from himself, IF you want the episode to end with you still standing. And what's more, you'll feel less hope if you don't defend yourself. It's a very physical game, and a very mental game at the same time.

If things come to a head & he has to be admitted to in-patient, Greenhorn has assured me it will be a 30 day situation for meds to stabilize WITH the understanding to all parties involved, that Carson returns to Tahlequah afterwards.
We discussed some other possible band-aids for Carson to help him feel more comfort, and she gave my contact info to the Tahlequah employees to contact me day or night. Since they have not answered my correspondence I think they're probably not happy Carson isn't gone. And may be pouting.
As I would tell any of my kids, "You're only hurting yourself by not cooperating with me."

From here, Carson & I are on borrowed time. I have a million phone calls to make today and try to circle the wagons and find a plan B.
B is for Boot. There happen to be a lot of boots in Texas.
What is it Bruce Willis says at the end of the "Die Hard" movie?
Yippee ki yay...and all that jazz.