‘A Profound Decision..from Bubbles Beneath Water.’
I instigated discussions with Brian about returning to Australia to live. Brian thought my idea to return ‘home’, ludicrous. There was absolutely no way 'he' was leaving the 'Grand ol' U.S. of A.'. He was still as much enamored by it's thus far not forthcoming opportunities, by it's potential and 'promise' as I was intent to return to the familiarity and perceived safety of the relaxed Australian way. He would not hear of it. So passionate he was with the United States and the lifestyle he enjoyed. His rebuttals were almost vehement.. “ THIS is our home Lyla! THE U.S! “ Never any openness to understanding or discussion. That was were he stood fast, stubbornly, and would not budge.
Yet despite Brian's refusal to entertain returning, I had to think of the long term ramifications of staying in the U.S. I honestly didn't like what I perceived as a possible future, for Miranda based on experiences to date. I researched and made calls. I spoke with Miranda's doctor about flying given the only time we'd attempted it after he seizures began, the change in pressure had put her into 'status'. It was made clear he would give her health clearance to fly only if I took an ICU nurse with me and she was in a class where she could lay down and be sedated. So... it was possible. It would just be hellishly expensive. I hated to think what a business class ticket to Australia would cost. Yet the doctors green light was all the encouragement I needed.
The more I investigated the possibilities, the educational supports, the social framework in place for children and families with disabilities, the more I allowed hope to return. The more an alternative became feasible. The whole ‘Child Services’ debacle had left me emotionally traumatized. It had instigated a profound fear of taking Miranda out in public lest she exhibit one of her irrational tantrums or dash across a parking lot causing harsh, ignorant, judgment of my ability to control her from bystanders, which I knew could ultimately result in a call to local police. That kind of additional pressure was just impossible to bear.
The way I saw it there came upon us a new enemy, aside from, yet just as dangerous, the invisible monster of seizures we had to fight. This enemy had a name at least, a diagnosis…it was simply called ‘insidious futility’. As much as Miranda was at times dying to steal her breath for life, I was now dying to steal a sense of security… from somewhere. Security that was instinctive, like being in the arms of a loving partner you expected you could rely on. Or security in the knowledge that your extraordinary sacrifice and efforts as a parent were
acknowledged. But neither existed where I could reach for them. I had only myself at this point as a resource. ‘Faith’ and I had not yet found each other. And I felt overburdened with disappointment in myself for leading a life that arrived at this emotionally and practically desolate place.
Despite my emotional weariness and newly embedded anxiety I became enthused. Enthused with an overpowering instinct to flee… to scoop up my children and run to safety. The onus, it seemed, was mine alone to protect Miranda and ensure a more secure family life for Harry and Mathilda. Australia, and returning ‘home’ became my escape route and I was determined to go it alone if Brian refused to respect the torment Miranda and I endured relentlessly. I realize now he could not accept what he did not know. He had never seen Miranda and I in hospital for longer than a couple of hours no more than three, maybe four times over the nine years. He had made his choice to stand back. He had decided how much he cared to expose himself and what that would be expressed as. He chose not to learn to be supportive or even ask how. He chose…himself and his lifestyle. He chose, in essence, his own personal escape from the realities and daily demands of fully being present for his family.
As I waxed and waned over the decision to exit a life attempted in the U.S, and possibly leave Brian behind, I found that with each promising discovery of practical support back in Australia, the decision became more obvious. And then the decision more or less made itself for me.
It was February vacation and Brian decided to go across the country with his friends to Utah, to ski, taking Harry with him. I was, yet again, left at home with Miranda now aged 9 and Mathilda, barely 3. I did not have help and I knew it would be a very long week trying to entertain the girls inside whilst the snow piled up outside.
It had been a quiet day, we had baked cookies together, and made play-dough. Miranda had as usual, filled in a lot of her time by plastering the television screen with cheese slices and watching the vibrant kaleidoscope of moving colors in Bob The Builder or Thomas The Tank Engine beneath the yellow squares. Smearing the cheese on the smooth screen had become one of her preferred activities of late…and at night when she went to bed I would need a paint scraper to clean the television, creating a clean ‘canvas’ for her the next day. It was just one of her bizarre, socially isolating yet strictly adhered to rituals.
Somehow when the boys weren’t around the energy in the home shifted effortlessly into a calmer flow, as if the erratic, hyperactive resonance had just up and left, and I suppose in a practical sense it had. The home was warm and now relaxing and I was grateful for the reprieve of Brian’s old fashioned demands and the guilt that engulfed me lately when ever Harry would want me for something I couldn’t attend to.
Bath time was always a challenge with both the girls but since I couldn’t leave Miranda unattended downstairs I knew I would be bathing them together. The day was coming soon that this would not be possible as Miranda seemed to be growing into her long legs. As the water flowed from the faucet the air filled with the steaming fragrance of lavender and rosemary from the dissolving salts as I laid out each girls pj’s in the cramped tiny bathroom. As I slid the glass doors across the other side of the tub the thought occurred to me of how dangerous they were, being so heavy and easily breakable if Miranda decided to throw a tantrum one day in the tub.
In hindsight I find it strange that I had thought that, as if a warning had been provided, but I needn't have been concerned about breaking glass. I washed the girls hair, and lathered up their torsos, Mathilda playing with her bath toys and squirting Miranda who for the moment, found it funny. It was always borrowed time though and in any second the scenario could turn, so whilst it was still pleasant I plucked Mathilda out of the tub and dried her off whilst Miranda lay herself back to stretch out and enjoy the warm bubbles lap over her entirely.
Mathilda was dressed, her bouncy girls towel dried and sent off to play in Miranda’s room less than a foot away adjacent to the bathroom. I turned my attention to Miranda, I perched myself on the loo, looking down into the tub and smiled at her, as she rolled about in the soothing water, the sensory pleasure evident on her expression. Such simple pleasures gave us both a sense of reprieve and a silent gratitude for life that I knew most people passed by. The water was getting cool and grey with soap, so I attempted to drain some with the intention of refilling it so Miranda wouldn’t catch cold but she protested, unable to understand the common sense of letting water out so more could be put in. I sighed with a familiar worn out frustration at the limitations she placed unbeknownst upon herself.
Suddenly, I heard a crash, followed by a tenuous whimper coming from Miranda’s bedroom. I leapt up off the loo and across the hall to see little Mathilda had pulled
the antique dolls house down on top of her. It was made of tin, so not heavy and as I inspected her for possible cuts from its right angles, I was relieved to learn her tears were only from the shock. She wasn’t hurt, but muffled sobs rose from her chest and the tears began to fall. I pulled her to me, rocked her, and when she calmed down I put on my serious mommy voice and reiterated why she had been told many times that the dolls house was only for decoration, not for play. As I searched her wet eyes to ensure the message had finally sunk in, a strange snorting sound, an almost barbaric kind of gasp echoed terrifyingly from the bathroom.
Mathilda tumbled out of my arms as I raced into the bathroom just in time to see Miranda’s stone like stare on a frozen face slip beneath the water with a single bubble of air escaping her blue lips. She was seizing, and her head was slipping deeper under water.
Sheer terror and adrenaline took over. To this day I cannot recall how I managed to get her out of the tub so quickly. It was as if possessed by some supernatural strength wrapped in a miracle that I slid her body seemingly effortlessly up and around the glass doors, over the toilet and laid her out full length on the tile floor, in an area no wider than two feet. She wasn’t breathing. The seizure still had her lungs in its grips.
Her bowels evacuated as I pushed her onto her side and began to slap her back. With each hard contact of my hand water spurt forth from her mouth. I looked up to see Mathilda standing ghost like in the doorway, her expression equally frozen. For a split second I considered how this must look to her.. Mummy hitting Miranda…but I didn’t have time to explain. “Go get Mummy the phone from downstairs.. can you do that Darling?” I wasn’t yelling but I wasn’t calm. I was terrified and Mathilda instinctively aware that she knew precisely how much danger her sister was in.
When my last few slaps hadn’t brought forth any more soapy bath water I rolled Miranda, who felt like a large block of wet slippery clay, onto her back and started CPR. She was as cold and rigid like a marble statue. Her face frozen, her color a mottled grey, her lips still blue. Still the seizure was gripping her, keeping her entrapped in an airless black space between the ‘other side’ and the ‘here and now’.
Mathilda returned silently with the phone and stood motionless, speechless, looking down on her sister’s lifeless body from the safe distance of the doorway where she could retreat into another room if comprehension of the scene frightened her. I dialed 911. Talking quickly, not stopping for breath, yelling my plea for an ambulance into the phone as I knelt on the floor so I could continue to work on
Miranda. I knew that Mathilda wasn’t strong enough to open the front door and gates, but I didn’t want to leave Miranda.. I had to keep going, keep breathing life into her. It was utterly unfathomable that I should lose her this way, that she would be enjoying a rejuvenating soak one minute then hurled beyond its tantalizing relaxation and into hell the next…possibly never to return.
And then it happened….I heard the operator only vaguely say that help was on its way, the whoosh in my ears so loud as to block everything out. Every hair stood on end, a frigid coldness wafted over us and I visibly saw Mathilda shake just as I looked straight up at her and our eyes met, I couldn't hide the disbelief that we were witnessing death steal her big sister and I was powerless to stop it. At that moment Mathilda was an old soul…knowing and empathetic beyond her insignificant three years. Suddenly, there was an audible breath, huge and engulfing and the heave of Miranda’s chest pushing my hand up.
My eyes darted back down to her face as she closed her eyelids….then opened them again. Another loud gasp, and another, then a cough, a splutter, more water spitting into the air and then…. she looked right at me. Miranda truly saw me. Her gaze intent, focused and acknowledging. Miranda had returned from the edge of life.
Shivering uncontrollably, the mottling of her pale grey skin slowly bled back into a pale white. I witnessed with overwhelming relief her lips become infused with crimson..and then her eyes closed once more. I shook her, but she did not respond. I spoke gently to her, coaxing her to open her eyes, hugging myself around her wet body…. anything to have her feel me, hear me. Still nothing.
Within those hellish moments I heard the loud thund against the front door then more thundering of heavy equipment laden men charge up the stairs… Mathilda was pushed aside and the drama took over. It was like being in a silent movie. Words were redundant. I grabbed Miranda’s silky hospital quilt, the one that was always cheerful even if frayed, and wrapped her as best I could as she lay across the arms of the EMT. The team all knew her well…they knew the bleakness of this episode. I cleaned the stools from the bathroom floor then hurriedly sought Mathilda, preparing us both to go to the hospital with Miranda.
When I reached the bottom of the stairs, Mathilda in one arm clinging my neck tightly, tiny feet snuggled in rabbit slippers and the hospital bag in the other.. George was standing in the doorway. “You can’t come with us this time.” His face portrayed my worst nightmare had crept into the edges of my awakened reality and panic flooded my veins instantaneously.
“Its serious, … you know this.” he continued. My eyes searched his for some assurance. “You are the most put together Mom I’ve met, but right now you are completely undone… I’ve never seen you like this.” His words were like an echo… in a dream being heard yet meaningless. I must have looked like a crack head, eyes wide, energy fierce, scattered, was I in some kind of shock?
I looked from him to Mathilda and my eyes welled up with tears as he went on..“I want you to take some time. Pack your bag for Boston… Organize the little one, DO NOT drive in this state… I DO NOT want to see you following us… do you understand me?” I nodded. “Do NOT get behind the wheel.” He repeated sternly.
I did understand.. I was visibly shaking… all I could think of was that If I let her go without me I would never see her again. I could not comprehend her dying not being in my arms. I knew it was not good. I knew she was breathing, at least I thought she was breathing… but I didn’t know if I’d gotten all the water out of her lungs. Was she going to be brain dead? Was she going to be even more cognitively impaired if she did regain consciousness? Or was she going to die en-route to the hospital? All of these heinous considerations swam about simultaneously. I had to shut them off. Mathilda needed me present…needed the assurance I didn’t have.
As soon as the ambulance left I packed a bag of activities and snacks for Mathilda and a bag with a change of clothes for me. I sat my usually joyful little cherub, her brow now furrowed in concern, on my lap. We sat perched on the edge of my bed as I caressed the blonde curls from her face. She held me so tight…and I wrapped my arms around her…she was so perfect, trusting and expectant that life would provide for her.… Little Mathilda whose happiness radiated such unselfish joy. I whispered how special she was, how loved and adored, how brave she was and how grown up of her it was to get me the phone without hesitation. I smiled at her through a sorrow so intense the love portrayed I knew was tainted with defeat. I took a few deep breaths and announced we needed to get going. I was not calm, nor collected. If anything my anxiety had increased with every second I was away from Miranda. I just prayed Mathilda didn’t feel it.
Mathilda was snuggled securely in her car seat, wide awake and peaceful as I drove like a maniac to the local hospital. On the way I dialed Miranda’s epileptologist in the city. I couldn’t contain the panic and I began crying uncontrollably into the phone, so incredibly fearful Miranda would be gone by the time I got to the hospital. I reiterated quickly, breathlessly, through a voice filled with terror, what had happened and my fear that I didn’t even know if she was still alive. The resignation of the probabilities he considered immediately were obvious by the period of extended silence on the other end as I sped around other cars in the wet slushy night. After the silence..... came the sigh. His long, heavy sigh. I was too scared to hear what would come out of his mouth next so I blurted out more details, seeking defense against what I knew he felt was the inevitable. “ It was organic shampoo!!!!! “ I was irrationally thinking this would not be so dangerous in Miranda’s lungs. I heard myself.. I was being hysterical. But I couldn’t help it… just couldn’t help it. The fear of Miranda's death engulfing me.
Her doctor said he would arrange immediate transport and get the ICU on call and ready to take her. Everything was out of my hands now. I just had to get to her! Then circumstance hit me like a sledgehammer. It sent my mind reeling away from Miranda in completely the opposite direction. Mathilda!!!! I looked in the rearview mirror at my gorgeous little poppet. What was I going to do with Mathilda? Who could take her until Brian could come for her….Brian!!!! Oh my God…Brian was, clear across the country..and given the time difference, probably on the slopes. I couldn’t take Mathilda to the Boston hospital with me.. they wouldn’t allow her in the ICU and besides, I didn’t want her exposed to what ever nasty germs and diseases were lurking there, never mind what seeing gravely ill children would do to her.
First things first… I had to call Brian. That one call… changed.... everything…..changed my already strained allegiance to him. changed my life. It ended any hope I was clinging to, false or potential that I could honestly rely on this man to build a future together. It was the one call that set the chain of events into motion that would see me leave the country to head home…I believe this is known as a ‘catalyst’ and so it was.