One minute, I was sitting in the GP’s office, waiting for a locum to give me blood test results. The next thing I knew, I was a human pin cushion, sitting on a plastic bed, contemplating mortality. It’s been a heck of a weekend. Never fear, the worst has been ruled out (I am not one for cliffhangers). Creating drama is not the point of writing now, from my bed at home. I just cannot shake the thoughts I had while peeking through a door that too many parents of kids with special needs, including kids with FASD, have looked through. What happens if mum (or dad or carer) gets sick, maybe even seriously so?
I have encountered an overworked, well-intentioned, bureaucratically inept UK healthcare system that has been minimally efficient but not kind. I spent 36 hours being led to believe by a team of medical professionals that there was a chance – their idea, not mine – that my world might change irrevocably as a result of the tests they were taking. They thought there was a chance I had a brain tumor and a tumor in a lymph node. This was not a knee scrape. Not once during the 36-hour ordeal, did any medical professional sit with me to explore how I was doing – not as I repeatedly explained when asked by people who did not read the chart about the cancers that killed my mother, the heart problems that killed my dad, the aneurysms that killed my aunt and might have got my mom but didn’t have time, the strokes, the diabetes, the grim genetic heritage I carry.
Every person who took my history looked at me strangely when I could not answer how long I have been feeling run down. They seemed surprised I couldn’t pinpoint when my symptoms first started. They asked how long I have been feeling tired and were skeptical when I joked I couldn’t remember a time I did not. I explained we have some special circumstances. An 11-year old child with FASD. A 13-year old son who has been sick on and off for years with Chronic Fatigue Syndrome. So, no, I haven’t really been paying attention to my own aches and pains. Maybe I imagined it, but I felt like I could see the boxes ticking in their head, a tired mum, tick, special needs child, tick, probably nothing wrong here. Except for the symptoms, some of which could not be ‘faked’, some of which I didn’t even know existed, let alone know that I have. Serious symptoms, serious enough to have them stream line me to a bed on a night when no beds were available. Serious enough to have them wheel men late at night to a different room so they could start a women’s ward right then.
The lovely woman who was eventually moved into the bed across from me has brain cancer, previously had breast cancer. She told me she is trying to do all she can for her grown up sons and her partner before she faces whatever comes next. “But at least mine are grown,” she said as the words struck home. The implication hanging. It was some really hairy karma that put me in bed across from a walking embodiment of my worst fears, a woman for whom I needed to find comforting and encouraging words. And I did. Or I tried. I know what brain cancer is, I held my mother’s hand as she died from it, the one cancer that finally claimed the last of her strength.
As they scanned my head I instinctively flashed back to the young, athletic me lying on the beach soaking in the sunshine. Surprising myself at the imagery that came to me, but pleased. Like bumping unexpectedly into an old dear friend, this other me was there. Reminding me of days long, long ago. A different me. A stronger me. A more optimistic me. It was comforting and warm. As the scan clicked over my strapped-down forehead, eyes closed, so many images of sunny days spent on many different beaches flipped by – the beach of my childhood by the sea, the beach of my boardwalk waitressing days, the university lakeside space we called a “beach” on sunny music-filled afternoons, the bright sands and ragged coastline of Cornish holidays, the lounge chairs filled with friends on rooftop pools during my early professional days. They were all backward-looking images. I could not for a moment allow myself to think forward. I could not possibly think of all of my hopes and dreams and unwritten books getting blotted out by overactive cells in an overcrowded brain.
Mostly, I could not think of what a positive result would mean for my family. Watching re-runs of Downton Abbey on my phone screen, I refused to go through that door in my head. If I had, I don’t think I would have been able to breathe. I simply could not allow my mind to wander in that direction. I stared out at airplanes landing and taking off, thinking of the places I have been and how no one determining my fate had a clue who I am really.
When it turned out I am not facing imminent death, and after reeling off a string of contradictory and confusing information, the NHS spit me out of their system unceremoniously at 10.15 pm on a Saturday night (I had to remind them in a hallway to remove the cannula). My 36 hours of being brave crumbled, and I pleaded through my frustrated tears. Somewhere out there is a young well-meaning and exhausted junior doctor, whose name not one nurse on the floor could tell me, who bore the brunt of a decade of frustration trying to move this system.
I was begging. I don’t beg, but I was begging. Please don’t send me away without answers. I know how this system works. I have a child with FASD and one with CFS. I know the months of waiting for an appointment with someone who may not even be with the right specialist, which will then lead to waiting more months. I know how each person looks only at their little bit of you, through their little prism. I know how impossible it is for them to wrap their heads around a confusing case. I know how the system is not proactive, but reactive. I know because we have two kids with health issues who have each in their way fallen through the cracks. In one breath she told me if I stayed until Monday I would see a neurologist then but that I had to go home that night as my symptoms were no longer ‘urgent’, and so it would probably take 18 weeks for me to get an appointment with a neurologist. I told her that is not fair. I told her the system is broken. She later came back and said we all know the system has problems but she was tired and she had to go home, she could not find another junior doctor to finish the exam she was trying to do but could not because the equipment was broken, and I should just leave. I was panicked that for once we had carved out space for me to figure out what is wrong with me, and I knew that if we left that place my needs would be diluted again, this process would drag out, and the demands of my days are so intense I would have no option but to jump back in.
My fears I might fall through the cracks were real, as judged by a phone call at 2 pm the next day from a tired and confused nurse asking me if I had been discharged (apparently they waited several hours to try to figure out why my bed was empty, which is a whole other level of crazy). They had no record of my discharge or follow up, they had not even been briefed verbally by the night shift. I see the paperwork trail fading. They will close me out of the system, tick. Leaving me to swim upstream in a weak state.
When I look at this from a long-term perspective I know I can’t give into the system’s desire for me to just go away without answers. But the short-term reality is that I must keep on in my daily life. Our days are demanding as we help our son with FASD navigate the world. I see the strain lines on my husband’s face. I see the limitations of relying on friends and family. Helpful as they are, the strain has been immense on my husband in trying to get through just one weekend without me when under such stress. I know I am not irreplaceable, I am not that big-headed or vain. I travel a lot for work, but this weekend was different. I see what happens when you remove me from the picture if only for 36 hours. And that scares me more than any potentially aggressive cells might have done.
When I came home at 10.30 pm, our 13-year old brave son was waiting up for me. He sat by me on the couch. Being near. Our welcome-home hug held just that much longer. Our 11-year old son with FASD was spending the second night in a row with his grandmother and aunt, having spent the days with another aunt and her family. This alone is a very rare occasion, one we usually prepare him for well in advance. Instead this time it was all last-minute changes and quick planning. He did well. When he came home in the morning, his grin at seeing me was the most beautiful smile I have seen in years. Then he too needed me to sit side by side with him. He refused to go to his beloved gymnastics, admitting to me the weekend has been “tiring” (his word, a more abstract word than he usually uses, a word that made my heart swell even in my light-headed state). My husband, showing signs of the weight he has been carrying for a weekend, needed a break. My boys needed me. But right then, there really was not much more of me to give. I need recharging.
Here’s the thing. Here’s why I am writing this on a blog about FASD. None of these moments were unaffected by the overarching reality of how FASD has affected our life as a family. Our son is lovely. He also has special needs. We cannot alter his routine without consequences for him and for us. We really cannot easily ask others to look after him. He cannot verbalize his fears, so when he heard his mum was in hospital it was like a ticking bomb. Family who did step in saw a kid who behaved really well for them, and we are proud of him for that and appreciative of what they have done for us. But my husband and I both knew that would not be the whole story.
I read the distress in our little guy’s eyes, beyond that big smile. I knew this would be a long day. I saw the fear in his eyes when I told him it was time for gymnastics. I hugged him and said not to worry, I promised if he went to gymnastics I would be here when he returns. He didn’t trust that promise. We did not force him to go. Instead, with my head pounding, I sat on the floor by him as we googled pictures of mouldy cheese together for a school poetry project. He needed me physically near.
Those who looked after him for us didn’t see the toys getting thrown down stairs, the hour-long perseverative desperate search for a missing green bandana, the smashing of marble runs, the manic laughter, the tears. The way he needed me to scratch his back. The major meltdown that happened after dinner, the spitting and kicking, the blowout between my husband and I who are frazzled beyond belief. The ringing in my ears, the way I just wanted to curl up with a pillow and rest.
How something as simple as the need to plow through laundry (even with help from my mother-in-law) on a weekend before school starts again after a long holiday caused a whole chain of ‘asks’ that we do not normally ask and stresses at home that tipped us collectively over the edge. The scene that started with my disregulated son spitting at me, cursing, and knocking the glass of water for his melatonin out of my hand and ended with him sobbing in tears after he saw mummy and daddy yelling. Then the household-wide aching silence as we all tried to tiptoe around our tiredness and the feeling we have all just gone too far. The conversation I had to have with our youngest, despite the desire to bury my head under my pillow, saying it’s ok. Sometimes when he gets frustrated he does things he doesn’t mean and he throws things. We understand. Sometimes mum and dad get frustrated too and they yell. It’s ok. We’re ok. I left the room, thinking it’s calm. Then the smell of sulphur and the realization that our son was striking matches in his bedroom, commandeered from one of the houses where he stayed. And I see he was googling “how to light a match with a lighter” and we realize yet again how serious it is that we keep things calm around here, how even on weekends where mum is sick and in hospital we all must be vigilant, maybe hyper-vigilant at those times.
I know my joking Facebook posts about hospital foods showed a light face. I know that even still after all this time even close family and friends cannot understand the different behaviors at home, once our son’s game face is released. I know if we had called any number of people on that post-hospital Sunday when really we (I) needed rest, they would have come. I truly don’t write this to make those around us feel bad. I know they would have come. I write this because I know other families struggle along as we do. I know there are so many who will “get it.” Other families who know how very hard it is to ask. Raising a child with FASD puts added strains on the most stressful times. Times like these. When mums and dads get sick, the whole thing can crumble. And of course, that is the fear we all carry in our hearts as we raise these precious and vulnerable kids. That’s the door we cannot look beyond. What will happen when we no longer are here?
So, anyway, I am here at home. Not dying (thankfully) but undiagnosed. Still feeling like I have been run over by a bus. Life goes instantly back to “normal.” The thoughts still swim in my head wondering if this is psychosomatic (though I know it cannot be and now there is medical proof of that). Still, I wonder, maybe I am making it up, maybe I just need to juggle my stress better, maybe it’s not that bad, maybe I don’t want to go for follow up appointments, maybe there is no point if they aren’t going to tell me anything anyway. Those thoughts, the difficulty of balancing it all, has my stomach in knots – I was pretty sure of that while staring into the toilet bowl before 8 am on the morning I first came home. That wasn’t any newly caught hospital bug, that was my life.
The pressures on those caring for kids with FASD is immense. When and if my son reads this on some future day, I want to be clear that I am not blaming him for the added stresses. He is the last person I blame. I haven’t googled it, but I would bet that parents of kids with special needs have medical issues that are too often overlooked until they become chronic. I would bet many marriages don’t weather these stormy days as well as mine can. (And so I will say it now to my husband, I really am deeply sorry for that most recent Scene From Hell. And for whatever one is coming down the line in the near future.)
It can be an uncaring system that we have to navigate. People defend the NHS, and I do too. But I don’t excuse it. Obscene budget cuts have created an institutional failure to thrive. The people in that system are trying. Nurses who tell me they don’t drink water during their shifts because they have no time for toilet breaks. Junior doctors who are talented and well-meaning but who are taking the brunt on the front line of a system that is throwing them to the tigers with equipment that is broken and a lack of resources and options. Bureaucracy that leaves kids with FASD brain injury waiting years for diagnosis, and once there is diagnosis leaving the families bushwhacking their way through the confusing, disconnected, and few-and-far-between services. A system that wears down carers to their outer limits, and then regurgitates them too when they need help.
So there we were. My son and I sat on the steps only 10 hours after my discharge, finishing up his poetry book assignment – one of the most intense homework assignments he has ever accomplished. It’s really good. And yes, I scribed for him. Yes, I prompted him when his brain couldn’t figure out conceptually what was being required. But the book is full of his thoughts, his quirky humor. I know that no one else could have coached him through this over the past weeks in the way that I could. We’re a team.
And yes, I helped him mop up the water he threw at me, pushed aside my weariness and rubbed his back as he cried after the most recent meltdown, even as those regretted shouted words between my husband and I hung in the air. Tiger Mom even in illness, for better or worse. I am glad I can help our little guy. I will give all I have to family. Even on days there is little to give.
I just wish sometimes that the government saw past the need to supply far away battlefields and chose instead to give armor and support to those of us fighting the good fights for our kids right here at home. They have the money. They do. They just choose to spend it on other things. I try not to be too political here, but the lack of support for those with special needs and their families is a political choice that does not speak well for a supposedly caring society. The message is clear: just don’t get sick (especially on weekends). Soldier on. Don’t expect us to equip you for this particular battle right here on our doorsteps, inside our homes, in our hospitals. We’ll spend trillions on “peace and security,” just not for those with special needs or those who are helping them. Not today anyway. Not fast enough to help our son. So, we’ll just get on with it. Because that is our only option.
My heart goes out to all those who have looked through the doors I have faced this weekend. I share the relief of those who have been able to turn away again, if still unwell, to the daily chaos. I wish you all strength to find the answers you need to not only go day by day but to feel truly well again. And for those parents and carers who are through the door – those who have diagnoses and still carry the worries of what will happen to their children – I send you solidarity and share a dream of world with different priorities. I wish you and your children true peace and security. In the meantime, we can only cherish the days we do have. However imperfect, the very fact we are here together is splendid and worthy of celebration. I know from my parents’ illnesses, and I know from looking into the eyes of those brave people I just saw in the hospital beds and chairs, no matter how bad it is, we have it in us to fight for tomorrow.