There I was, flying along at a fairly fast pace, feeling excited about the new year and really encouraged by what seems to be a possible paradigm shift in the UK with regards to FASD. OK, and yes, maybe also a little overwhelmed by the enormity of what it could mean if we collectively get this right for the lives of so many who have been ignored for way too long.
And then, three weeks ago, I caught the flu. It smacked me in the face and cut me down at the knees like nothing has for a long while. A few sheet-drenched days of fever, chills, splitting headache, dizziness and weird vision that had me thinking something worse might be happening inside my head. Flu followed by secondary strep throat and chest infection. A winning trifecta. A pulled muscle in my back from coughing too much. Unable to eat properly. The inevitable delay in getting the NHS to cough up any antibiotics. A lovely trip to A&E on a Friday night to ensure I had not stupidly poisoned myself by not realising American acetaminophen is the same as British paracetamol. And through all of this, trying very, very hard to ensure our 14-year old with FASD and his 16-year old brother with Chronic Fatigue Syndrome did not catch my plague. Praying that my husband – who was key to keeping things afloat over the past three weeks – didn’t catch anything either. He and our 14-year old had flu shots, thankfully.
It’s been three weeks now. I even have a bed sore to prove how pathetically holed up I have been. There’s nothing quite like that to make one feel old, worn and bemused. But as I start to feel human again, I am feeling positive about some things and scared about some others.
A few years ago our son with FASD would never have understood my need to stay segregated from the family. He would not have been able to empathise with me. He would likely have escalated frequently because the confusion and anxiety would have been too much for him.
But, as a family, we have survived these recent weeks. A few moments come to mind, some good, some not-so-good.
While I was in the midst of the worst of the flu, our son wasn’t fully understanding why I could not help him bathe and get dressed for school, as I do most days. I said very directly, “Look at me. Do I look healthy or do I look ill?” And the poor kid stared at my haggard face and burst into tears. I guess I was trying to be literal in helping him to ‘see’ me but it was not my finest moment. I scared him. His eyes were so distraught. I saw in that moment what would happen in his world if I were no longer there. It scared me. News reached us that a good friend and colleague passed away at the same time as all this was happening. That news and the look in my son’s scared eyes left me devastated during the height of this illness.
About a week later (when the worst of the flu morphed into the cough/strep phase), my son and I crossed paths in the kitchen after school. In a very quiet voice he asked, “Are you feeling a tiny bit better, Mummy, just a tiny bit?” My heart melted at his gentleness, at his compassion. At his need for hope.
Another day, when it was just the two of us in the house, I heard him moving quickly and making some panicked noises in his bedroom. I could tell something had seriously distressed him. I crawled out of bed to see what was happening. He had a 2-litre bottle of water in his room and had spilled about a litre of it all over the floor. He thought quickly – he gathered towels, he removed the wet duvet, he understood the danger of the wet wires, even as he was teetering on dysregulation. I reassured him how proud I was that he knew the right things to do and I helped mop up the remaining mess and change bedding (while hacking and sweating all the while).
Then, a couple of days ago he had been trying to find something for a video he was making. Hours later he said to me in a baby voice that there was a problem with a light bulb in his room. It took a bit of deciphering, but I finally worked out that when he couldn’t find what he was looking for, he had whipped over his head a phone charger that hit and broke a light bulb in his ceiling light. Over the past three weeks, his room had become an absolute pit without Mummy in there every day tidying it up. So the clean up of the broken bulb was a bit more intensive than it might otherwise have been. I had to clear the floor so I could vacuum up the broken glass. Maybe this doesn’t sound like a ‘win’ but it was. A few years ago this would have been all-out chaos, the entire room would have been literally smashed up. I would not have been able to handle the scene in a weakened state. Instead, we dealt with it, he left the room (his idea) when I started to vacuum as we both know he can’t cope with the noise. Peace was restored relatively easily. He coped with waiting for new bulbs until his dad could get to a shop.
There is a lot to be thankful for in these fairly mundane stories. When Mum goes down, things can fall apart fairly quickly but this time this house, this house has stayed floating.
I see the weariness in all their eyes. I try to listen to stories from school. I try to show interest in the video of the extra large gummy bear with a heart in it. I nod when being told about some twist in a video game. I take baby steps to reengage. But this mum has been lying here watching box set after box set trying not to think about her mortality. (It’s especially hard not to when the GP seriously thinks you may have OD’d on paracetamol/acetaminophen and sends you directly to A&E for emergency blood tests.)
The weight of it all sometimes can’t be ignored. I find it hard to walk the line, trying not to be dramatic but acknowledging how very ill I have been is important to our family’s wellbeing. Being an additional needs caregiver is a tall order sometimes. And sometimes, sometimes we can’t do it. It’s hard in any household when a main caregiver is ill but it has a more profound impact in our house. The strains are magnified. It all is just that much harder to cope. And still, not everyone ‘gets’ it.
I feel lucky to have a network, a friend who can come over at a moment’s notice when we were sent packing to the A&E. I feel lucky that there are family members and friends who check in. I feel lucky to have employment that allows me the ability to recover rather than rush back into the fray before I am strong enough. I feel incredibly lucky to have a partner in crime who stays close and who looks after me. Even still, we have been barely getting by, feeling quite isolated and like people didn’t really understand just how hard this has been for our entire family.
But too many are out there who don’t have any safety net. Too many are struggling on this fine edge between coping and not coping: people who might not yet have the diagnoses and therapies in place that our son and our family have accessed, people who might not have the insights into alternative parenting strategies and appropriate support in school that have turned around our family’s trajectory. People who are where we were a few years ago but who don’t yet see the glimmers of hope we found.
What is out there for those people when they hit that point that I hit where they can no longer keep their heads up?
I do worry about the future. It scares the heck out of me. But I see these small signs of progress and I cling to them. I hold fast. In a crisis of spilled water, our guy knew what to do. That makes my soul sing.
I have sorely missed the hustle and bustle of being out there in it all with my boys. But there is some hope in the fact they all have gotten through this, in knowing that today after years of really difficult times we are stronger than we were.
Self-care is going to be my new buzz-word. I fear I was too worn down and that’s why this knocked me so hard. And next year? Next year this ageing body will be first in line for a flu shot.
The entire FASD community is fighting a life-and-death battle for systemic and lasting change. But we also have to remember we are all of us first and foremost on the frontlines in our own homes, and sometimes that is more than we can handle alone. It shouldn’t be so hard. And we shouldn’t judge when some find it overwhelming. This is exactly why society must put in place more funding and more supports for families affected by FASD. Whatever superpowers we may convince ourselves we have, we are in the end just human.