‘Escape from the Witches Castle.’
My cell phone rang. I reached to the table for it and checked the number…”It’s my husband…” I stressed 'husband'. If ever there was a time Brian and I needed to exhibit a united, strong foundation of family, care, and responsibility for Miranda..... it was now. So I took the call, disregarding the doctors presence.
“Hi Brian, listen….The psych team and Dr Milton are here now… They want to have Miranda admitted to a psych facility in New Hampshire…”
“WHAT????” I knew Brian would be as shocked and against it as I, but I also knew how this had to play out. We needed a 'good cop bad cop' projection at this stage… it would bide me some time to wrangle support for our refusal to accept the doctors recommendations and also give me time to seek legal counsel if it would escalate to that. I continued to focus my attention on Miranda and Brian, glancing briefly from the corner of my eye at the cluster of foe posing as friend standing across from us. Brian was thrown into defensive mode just as vehemently as I was. “NO FRIKIN WAY!!!! Just say NO!!! …”
“Brian… I have… The doctors feel this is the only way to figure out what medications will really work for Miranda’s behaviors….” I looked up making sure the team was listening to me reiterate that I truly understood their perspective. Inside I was a churning frothy sea of panic and fear and desperation, fully aware I was clinging by my nails to a piece of driftwood that represented our family in a storm ravaged ocean.
“It would kill her!” Brian and I, for once, were on the same page.
“Yes I know… She’s been stable since we got here… seems very content and I’ll read to her in a minute…” I was sending him signals, so he knew I was on my best behavior for the benefit of the team.
“Oh my God, don’t let them take her, we’ll never see her again,…”
“She’d blame us totally Lyla, she’d never understand it, I won’t have her in some lonely barren room drugged to sleep because she’s scared out of her mind…”
“Yes I know… I agreed calmly with insistence, even though I wanted to scream at the doctors everything Brian had said…Instead I acted like I was taking into serious consideration and discussing with Brian their cruel intentions.
“Well they think it’s not seizures causing these outbursts but behavioral…”
A beeper went off, penetrating the tense energy in the room with its shrill interruption. I continued to listen to Brian.. “Lyla we really can’t, there’s no way we can let them do this…”
“I know Brian, I know….”
Dr Milton caught my attention and said.. smiling…. can you believe it… “The team will be back later…” and then as if their nightmare for Miranda was already determined and set in concrete, the psych Dragon said… “ It’s very difficult to get into this facility and program but they have a spot for Miranda if she leaves tomorrow… the ambulance will take her in the morning.”
And then, just like that, as if she’d told me we’d be expecting a delivery of flowers in the morning instead of our brave, trusting young daughter stolen away to some psych facility, she turned and left.
I stood there, speechless in the bleakness that just drowned me, Brian still on the other end of the phone. I looked over at Miranda, she was so beautiful, so precious, so innocently content in her sacred little world, the outside prevented from piercing her peace by the efforts of myself and her family and teachers..and therapists. The single moment before hopeless dread dared overwhelm me, faith came rushing to the rescue with a ferocity propelled by the sheer terror of an overwrought imaginings of what her life would turn into if she was taken.
Faith presented itself wrapped like a gift…it appeared to be a possible escape route for Miranda.
“Listen, Brian…. you’re right… I’ll call you in a second. When I can get downstairs.” I lied. I knew that everything I said was being recorded by the hospital as was the purpose of the long term monitoring. It was intended to capture everything Miranda did in the event of a seizure episode which meant the sounds she made as well. I stepped into the bathroom and turned the water on before calling Brian back.
“Brian… I was just saying that for the sake of the doctors.. we have to find people. Para professionals, babysitters, teachers…even her pediatrician…. to back us up… to prove this is a dire mistake for Miranda… they want to take her TOMORROW!” Without hesitation I continued… “do you remember in the summer her team at school was going to arrange some behavioral therapy at home on a weekly basis.. to try to help with her aggressive outbursts..??? I’ll call now and leave a message that we want this to be implemented immediately.. I’ll call her teacher…”
I was breathless, my blood boiling, my face red, the sweat sticking my clothing to me, “Brian….You need to come in. I think we are in for a fight….Brian, I’m terrified….I think we need an attorney.” my voice had suddenly been swallowed by grief and I gasped between gulps of air and anxiety. The fear rising from within to be expelled as sobs stabbing me with sharp daggers of dread could not be held back… I was just utterly emotionally exhausted… already, and so very very frightened for Miranda.
“They CAN’T do this to her Lyla…” Brian was in denial…
“Actually, they can…”
There were no words of comfort from him, no immediate declaration of action coming to his daughters rescue and no offer to come in to stand by his wife’s side to meet the enemy and threat together. There was just an awkward, silence filled with foreboding anticipation. After an eternity, I sniffed, and sniffed again, wiping my tears on the palm of my hands and said quietly…” I better go… I’ll make the calls.”
“Keep me posted.” was all he said. Brian had let not just me down again…but Miranda…as usual.
I sat next to Miranda on the bed, trying to sound chirpy and loving, asking her what she was looking at on her Ipad, then telling her I would go and get her some treats..as soon as someone could come in and watch her. That nagging little fellow of truth and clarity who had so recently taken to sitting invisibly on my shoulder, asked me to acknowledge that still Brian could not be depended on… to be a man of infallible strength as I and Miranda needed. This was not the time to dwell on failings and the scorching questions bringing caustic erosive heat on my marriage of late.
I opened the heavy door and peered out into the hallway, looking one way and then the next for an aid or a nurse who’s attention I could grab. The afternoon was getting late, I could tell by the light deepening as it illuminated the room barely enough before needing to be replaced by the lamps. I needed to make calls immediately but knew I couldn’t trust that they wouldn’t be overheard and mostly I didn’t want Miranda to be inundated by my negative fearful energy. She had to be kept secure in the belief her world was predictable and safe.
“Excuse me….” I caught the attention of a doctor heading towards the nurses station. “ Would you mind asking for an aid to come and sit with my daughter.. there are some things she needs from the pharmacy downstairs…”
He looked at my face, moist and scarlet, with eyes to match and didn’t enquire, just nodded and kept walking. I waited an excruciatingly long half hour until I was running down the ten flights of stairs… desperate to work off some of the damaging cortisol I knew was flooding my system. I needed to be the strongest I’d ever been…Miranda’s psyche was at stake, but as soon as her teacher picked up the phone I couldn’t hold back the voice of a mother who’s child was in danger.
Her teacher, Roger was a truly rare soul. According to him, his students were extraordinary, intelligent, precious and amazing all in their own way. He truly loved them and above all respected both their personalities and their differences. Roger viewed Miranda’s antics as sophisticated coping mechanisms she had developed on her own. He was right. Miranda was extraordinary and the bravest most tolerant person I will ever know.
“Roger… It’s Lyla, we’re at the hospital… I need your advice.. we need your help… they want to take her....“ I gulped for air…”… Miranda…” I gulped again through sobs that escaped. “They want to have her admitted to some psych hospital for children in New Hampshire…”
“ Ohhhhhhhhh NO Lyla, that would destroy Miranda Girl.” He sighed, heavy with the burden of caring so much.
“They say she’s a danger to herself…it’s all they need to ‘section’ her. Roger… how do we stop them?”
“I’ll back you up… whatever you need… WE can’t let Miranda go there… it would take away her affectionate and trusting nature.. she’d never be the same.. she can’t leave you..” His voice was….truly sad.....with the heaviness of reluctant defeat..the gravity of the battle he knew was upon us.
What impressed me was how Roger had immediately assumed responsibility for an outcome by saying ‘WE’ can’t let them take her when Brian her own Father, had put that onus solely onto me telling me not to ‘let’ them take her yet not even offering to rush in to provide emotional and practical support and reinforcement for his own precious child.
“I don’t have the behavioral team’s contact info.. can you call them.. and set them up for at home… like Monday? I need to prove we have a new strategy to try ourselves instead of their heavy handed Nazi approach. I know it would destroy my beautiful girl.. it really would.. I’d rather die. and I think it would destroy me just as much.” That was it.. the flood gates opened and I sunk to my knees outside the busy pharmacy. People walked by me, oblivious to the torment and despair that wracked me, and of course anonymous…uncaring.
I only vaguely heard Roger continue.. I was slipping into a distraught kind of shock where everything becomes subdued..“Lyla… Lyla…. We are ALL here for Miranda… give them my number… I’ll talk to them.. I’ll sign an affidavit… what ever it takes.. I’ll convince them Miranda’s best interests certainly do not involve taking her away from us all.”
“Thank you, Roger, Thank you! Thank you so much! “
“Lyla, you have to stay calm…Miranda will get nuts if she feels you are upset, and that will just give them more fuel for the fire…”
“ I know, I know…. “ I couldn’t hold back the torrent of tears and anguish as I stood outside the store in the hospital. He was entirely right. I had to remain composed. I stood up and straightened up. I tucked my hair behind my ears and took a very very deep slow breath.
“Lyla, you there?”
“Um… yes… Roger, thank you again.. thank you for caring about Miranda so much. I’ll give them your number and tell them you are organizing the behaviorists to come and work with the whole family on a regular basis, beginning next week. And I’ll ask Brian to call our attorney.”
“I’ll call you tomorrow…as soon as I’ve arranged the team.”
“Ok, then… thanks.” Instantaneously I repeated a mantra to myself… “THANK GOD for Roger, thank God for Roger,” as I walked wearily into the store to buy Miranda the promised ‘treats’ for being such a patient girl.
She hadn’t objected, or been difficult, not one little bit when the forty or more electrodes were being glued to her scalp. She hadn’t complained or even pulled away when the phlebotomist drew her blood. She helped the para nurses secure the blood pressure cup and let the doctors prod her in attempt to evoke neurologically based reflex responses from her damaged nerves.
Miranda was a soul with limits and tolerances we could all wish for, but they were about to be tested to their very end where her mind would truly fracture from her personality. I could not, not ever let that happen. It would be entirely a different matter if she was verbal. But Miranda can’t tell you where it hurts… let alone what she is feeling. Miranda was like a wounded animal. All she had was love…. and trust… to rely on. Under such limitations, what the hospital was proposing they do with Miranda was barbaric and inhumane.
Utterly cruel beyond measure.
Suddenly, from a depth I hadn’t known existed, a strength and love rose within me to push the sorrow out. Despite everything we’d been through together, the flirtations with death, the behavioral outbursts, the aggression, the days and nights of both of our lives stolen by her seizures, Miranda I realized had a faith in me that was strong enough to withstand everything. If she could have intrinsic faith… so could I. There was only one thing to do while I waited for the inevitable return of the psych Dragon…. pray.
So that’s what I was doing, sitting, snuggled against Miranda on her bed, watching her sleep, when the door opened and in came the dinner lady with Miranda’s tray, and on her heels was the woman I dreaded going into battle with. She brought with her, reinforcements. A middle aged man, looking fit and purposeful introduced himself as Nathan. Nathan from the Social Work Department. ‘Oh shit, now I know I’m in trouble’ boomed loudly in my head.
I rose from Miranda’s bed and whispered a hello as I shook his hand. Both the psych doctors were flanking him and I felt their intentions waft over Miranda like a life choking toxic gas. I usually didn’t give the skill of being able to ‘see’ people’s energy much credence, but tonight it was so obvious I was grateful for the warning it provided. Another perspective providing a little more clarity unexpectedly came to mind. Immediately I silently gave gratitude…I knew this information had been sent from higher above…such is the power of prayer I acknowledged.
There had been substantial media coverage regarding the hospital’s protocol towards the autistic population and they were being pursued legally for discharging a child who died after being released back into the care of abusive care givers. They were also known of late to be very aggressive in cases taking profoundly disabled children from their loving family, because of complex care issues, supposedly to protect the child. I suspected this was less to do with Miranda’s overall well being, and the love and safe care she usually received at home was a moot point.
This was more to do with the hospital protecting themselves legally. They were now aware Miranda could be dangerous, to herself, they had evidence, she’d tried to bolt from a moving vehicle, they would be liable for negligence if they discharged her and she ‘seriously’ endangered or hurt herself…. physically.
What they failed to consider, what they completely disregarded, what they callously ignored, was that Miranda is not an empty vessel. There is most definitely someone home. Miranda has spunk, and verve, and a cheeky sense of humor. Miranda is a personality, a loving, bright yet profoundly limited young teenager, so typical in many ways like wanting her nails painted.
They wanted to take all that away from her, wanted her to pay an exorbitant price for their guarantee of her safety. In attempting to save her life….from an accidental death that may or may not ever happen… they were, in essence wanting to take that very life out of her. I would rather a seizure take her in the presentation she is now.. perfect, whole and complete… in her own way.
And so the battle began.
It was initially the Social Worker pitching me…“So, I understand there’s some apprehension in Miranda’s placement but everything is organized, she’ll be transported by ambulance tomorrow…..”
“Actually, no she won’t.” I stood steadfast and yet poised.…. “Absolutely not...My husband and I, and her teacher feel it would not be a solution, but rather a disastrous failure that would utterly destroy Miranda and our family.” I didn’t pause enough to allow them to interject, yet the Dragon Dr spoke over me…
“I thought you realized how important this opportunity was…” he stressed the word ‘important’.
“It’s not an opportunity, I know you said you can’t keep her safe here while titrating medications etc, but I don’t see why not.. you have a psych floor here with lockable units AND she’d have the benefit of her epileptologist available.”
“You’ve been told, this facility is the absolute best and it took a lot of persuasion to get them to reserve her spot…”
“So, what you are saying is… you aren’t expert enough to manage this… experiment which is what it really is.. you don’t know, yet you are the senior psychiatrist, if anything can be done to help control Miranda’s impulsivity. It seems to me that you want to destroy our family and this beautiful trusting soul based on a course of treatment that has absolutely NO guarantees.” I was out of breath.
I had to keep my argument emotionless so I kept going, too scared to stop lest they have a rebuttal that I could not argue with.
“I’ve called her teacher… here is his number… he will be a more impartial witness to what the treatment you propose will do to her. I’ve also arranged to have the behavioral team come in regularly…” It was stretching the truth, I knew it, but I had met with them and the town had approved the service…it just hadn’t quite been organized yet…. unless Roger had been successful.
The doctors looked at each other and the Dragon raised her eyebrows in skepticism.
“So what is this ‘behavioral’ person’s name? And I will take the teachers number and call him..”
“Its called PACES… “
“What IS that?”
“PACES is the name of the program that will be coming to the home to work with Miranda. I believe it will be once or twice a week.” I acted as if we weren’t under
threat of annihilation. I smiled, and remained calm. God was definitely with me. Shifting the responsibility from the psych team to an independent behavior group associated with the school district was like finding the escape clause for them should Miranda ever truly hurt herself. They were off the hook if they discharged us.
“I’ll make these calls and be back in the morning.” She left the room, the others following without a goodbye, goodnight, or even a…”I hope she has a seizure free night.” They were too busy minding their own egos and protecting their positions. I have never ever hated anyone until then.
I resumed praying… fervently. When it was quiet on the ward, the lights off, the stars visible through the big window from where I sat half slouched in the chair trying to rest, I would always give thanks. No matter how rough the day had been, I always appreciated these rare almost divine moments of peace. I could hear Miranda’s rhythmic breathing, and let go the traumatic experiences of the day. Eventually I closed my eyes.. and flirted on the surface of sleep, awaiting the alarms of Miranda’s vital machines indicating seizures or the light of dawn over the New England skyline. I could never anticipate which would arrive first. This was the third night without sleep and my edges were fraying perilously close to the core of a meltdown.
When morning the next day slid into the room without drama, a wave of relief settled the anxiety about Miranda’s future….just a little. I must have slept some. It made all the difference to my resilience. Stretching in the reflection before me on the window I thought it best to change out of my ‘yesterday’s’ outfit. I needed to present a ‘put together’ woman instead of an ‘every second on the edge’ mother. So I changed and put on a little make up, and whilst Miranda still slept I padded down the hallway towards the kitchen to get a tea, coming face to face with.....the Dragon.
She smiled at me. Actually smiled…. What????? I managed a half smile.
“I’ve spoken to Roger… and the director of PACS… I’ll be in in a minute…” then she continued on her way.
Geezus she didn’t waste any time…What the hell was that? Should I be glad? Should I be scared? She was deliberately attempting to undermine me.’What a fucking Nazi’ I thought… then smiled to myself.. Now I knew I’d had some sleep, my fighting spirit was fully charged. Suddenly I didn’t care for tea anymore. I walked back to Miranda’s room to find her awake and the nurse talking to her while she laid out Miranda’s morning medications. I busied myself changing Miranda’s diaper and giving her a tender wash while we waited for the breakfast to arrive and……..her.
“So,……….” she sauntered in without a ‘Good Morning Miranda’ and I realized not once in the past three days had she even interacted with Miranda yet she was prepared to make a life altering decision for her. My insides gripped tightly with disrespect and I was ashamed to admit…abhorrence for the Dragon and her team and I was till reeling from the betrayal of her epileptologist. My mouth went immediately dry and my hands clammy as I waited for her to continue her verdict.
“I was prepared to ‘section’ Miranda, until I spoke to Roger and the PACS director Sherrie. It seems everything is indeed in place for some substantial behavioral support to take place in your home starting next week when you are….home.”
The relief was overwhelming, I tried to hide it. Still I would not truly feel Miranda was out of danger until we’d been home for weeks…back in our normal routine.
When the Dragon left, I called Brian, well aware he had not bothered to call me, to check on his daughter over night…but then he never had. All he had to say was…”I knew they couldn’t go through with it.”I still didn’t feel we weren’t out of harms way. Miranda still had two more days of monitoring for seizures. I still didn’t feel any kind of support emotionally or practically from Brian. He was a disgrace as a husband and again losing my respect as a father. These feelings weren’t anything out of the ordinary, its just that I was no longer prepared to exonerate his lack of involvement or compassion for his disabled daughter. I was ashamed of him…for him.
The days on the neuro ward ended without Miranda’s seizures causing havoc and when the social worker paid us a final visit I found the courage and the will to tell him after fifteen years we would never return to that hospital.
Our relationship was over… they had eroded all trust that had been nurtured during Miranda’s entire illness. I pointed out that I had forgiven being falsely accused of shaken baby syndrome when she first became ill. I reminded them I had forgiven his department for setting the department of social services on to us because of an inconvenienced other patient’s mother. I stressed that treason was the reason we would never set foot in that hospital again. I made it quite clear that Miranda was not safe in their supposed care….and neither was our family.
There needed to be some big changes when I got home. Some very long over due, very necessary changes. But first I had to find the courage.