you can stand under my umbrella

I spent some time with a friend recently whose daughter died suddenly, unexpectedly. I’ve re-written that sentence several times. There is no right or easy way to say it, because ultimately, it’s not right is it? 

I started by saying that my friend lost his daughter. Except that doesn’t in any way reflect what happened. It implies a carelessness, some sort of temporary aberration. It’s more gentle, more polite, less difficult for others to deal with. Our children are supposed to outlive us, not the other way round. My path and his have been similar in many respects, different in others. They are very different now, and if I am truthful I have a tinge of survivor’s guilt, and he knows it, and we neither of us acknowledge it. This is our shared worst fear come true. 

I gave him some space and then he messaged me and asked if I would go to see him. He added, “I don’t want to talk about her, I can’t”. We walked in the park in the weak spring sunshine and sat side by side with our Starbucks, his a tall skinny latte, mine a single shot americano. Tentatively, we talked about work, about the weather, about lockdown. We avoided talking about family, and we avoided looking each other in the eye. After we had exhausted anything and everything else there was to talk about, we fell into a companionable silence, the air heavy with what wasn’t said. We watched the world go by, people cutting across the park to get to work, joggers, red-faced and wired for sound, dog walkers and lovers. All seeing and yet all oblivious, as we mostly are to each other, most of the time. How are you? Yes, fine, how about you? Life goes on, I thought.

“I just can’t talk about her” he repeated. And then he did, without hesitation, without stopping to draw breath, words tumbling over each other in their hurry to be said. His first thought was drugs (and so was mine), but the post mortem was inconclusive. He said it didn’t matter not knowing, not in the scheme of things, although I fear it might come to matter, very much. You wonder if somehow mind and body worked together to just give up, tired beyond her few years. 

They had not yet had her body back to begin the process of organising a funeral. They had not been allowed to see her. There was nothing to do but wait and wonder. He felt like a bystander. Our eyes didn’t meet – not once. Not until he looked me right in the eye and asked if I thought he’d ever get over it. A moment, overtaken by it beginning to rain. Soft, Irish rain, I call it, the sort that seems to get into and under your skin. “For fucks sake” he said, but still we remained. He laughed, it faltering away quickly. I knew what he meant.

We watched a young woman push an empty buggy whilst her toddler son meandered here and there as she tried to tempt him back with a rice cake. Organic, no doubt. We were almost certainly both thinking the same thing, a thought I have often when I see new parents just embarking on parenthood. How little you know of what might be coming down the road, and a good job too, or you would be paralysed with fright. When you’re in it, you think babyhood and toddler years are the hardest. The lack of sleep, the fear of breaking them, the sheer exhaustion of being on call, 24/7. You come to realise too late that the early years are literally a walk in the park. 

A heartbeat. I was grateful for the heavens opening to give me a chance to arrange my reply. I met his eye. I swallowed, my mouth was dry. Then looking him squarely in the face I said “no, I don’t imagine you ever will. I guess you might learn to find a way to be, eventually.” We don’t do platitudes, or soothing chat, or bullshit. I couldn’t put my arm around him. It was lockdown 3, it was not allowed, not yet, and he is not the type. Like my middle son, he doesn’t do touching. He rarely does emotion of any sort, or at least not with me. He does bravado with a kind of brutal sanguine. He was a little further down the path than I, when I met him, and I have looked to him for the experience of one that has been there before. Not advice, he didn’t dispense that. Just a sharing of experience with a forlorn but dignified weariness that I now recognise in myself. He sat, rigid, upright, both proud and yet broken. We were both wild-eyed and careful not to let a tear fall. Me especially. I had no right to cry when he didn’t. We both have controlled tearlessnessness down to a fine art. 

On the surface, we have absolutely nothing in common, save for the same irreverent (read for that, childish) sense of humour and our shared experience of the chaos and heartache of a child that has gradually slipped from our grasp. There is a strange solidarity in shared pain. I think terrible experiences can somehow draw you together. It’s funny, on some people it is writ large, the way they hold themselves, the inscrutable expression on their face, carefully arranged into closed, impassive, blank; the way they absent themselves when conversations turn a certain way. It takes one to know one. Conversely, there are people that you would never imagine in your wildest dreams carrying a secret so heavy they have buried it under an elaborate facade. I know that to many people, I have been that person, I sometimes still am. My sister used to say that I collect and attract “waifs and strays” and I realise now that whilst to a degree that certainly has been true, particularly when I was younger, it is also true to say that I am one too. I feel as if I am on the periphery of normality, looking in. A mask of humour can conceal a great deal. The tears of a clown, when there’s no one around.  

Carrying fear around with you, day in day out, in every waking thought and then in your dreams  – that weight is utterly exhausting. It makes you a shadow of who you really are. You merely exist, and you forget who you are or the life that you had. The daily routine of keeping the show on the road, a semblance of normality, is sometimes the only thing that I think got me through the worst of times. I have lost count of the number of times that someone has said “I don’t know how you have coped” and the simple answer to that is when you have other children – you have to. There isn’t a choice, and at times, reverting to autopilot in order to feed, wash and clothe them is a comfort. It requires no headspace, in fact it occupies it. In the last five years my memory has done a strange thing – I have no recollection of great swathes of time. They say it is the mind going into lockdown – trying to save you from yourself. When my sister went into Intensive Care after her accident the doctors explained to us that most patients have little or no recollection of their time there. It is nature’s way of protecting you. Unfortunately my mind has not worked to erase the more traumatic memories of recent years, but I often cannot recall what I did that morning, what I ate for dinner, if I had dinner, who I’ve spoken to or what I’ve said. I have little or no recollection of a single film I’ve seen in years, or any of the many books I have read. It’s all “filler”, whilst I wait for some kind of calm to be restored. I don’t think it’s because my mind is trying to protect me from what I’ve been doing or saying, I think it’s because I’ve been on autopilot. 

At home, just now, we ebb and we flow. In recent months things have been better than they have been, however when the lows and setbacks come, as they always do, I somehow feel them more keenly than ever before. To dare to hope that you are out of the woods most certainly comes before a fall. Searching for a way of being that brings any kind of peace and equilibrium is constant, for those of us that are in it for the long term. My nerves can’t cope with much else. It’s like constantly, carefully, skating over thin ice. I am well aware that at the moment, my resilience is very low. The slightest threat to our fragile state brings panic attacks, sometimes several times a day. The Middle One and Little M work as a team to try and protect and shield me from worry, and the kindness of that coupled with the shame of being cared for by an eleven year old with such reverence and tenderness serves to make me feel even less of a good mother than I did before. I wonder how these frantic years will shape them and their view of the world. It fills me with a terrible sadness. Three childhoods snatched away, not one.

On the worst of days I have wondered what I am useful for, if I am indeed a neglectful mother. What purpose do I serve if I have been judged and found wanting? What good am I to the world if I cannot meet the most basic of my child’s needs, to feel safe and secure? That way madness lies. I know, I have been there. At its worst, this is where autopilot was useful. I kept going because I had to. If I had the option to lie down and let it all drift away, it was tempting. My dreams were full of letting go of any responsibility for any single living thing, even myself. I wonder idly about joining a holy order, which seemed utterly beatific, were it not for the religion issue. I envy people that know what it is to have faith. I know with a steady certainty that I am not at all well and the thought of giving in to be looked after is so compelling it is as if it is a mirage appearing in a desert. I know what it is to exist in a state of high-functioning madness.

One of the things I find useful when I am really struggling to function is to keep my horizons incredibly short. In the early days of AJ’s illness, my hysteria would go like this – he’s not gone to school again which means that he will fail all his exams or he’ll get excluded and then he’ll go to an AP provider and then he’ll meet all sorts of kids who are NOT LIKE US and before you know it he will have joined a gang and then he’ll go to prison if he hasn’t been trafficked by then or god forbid maybe he will be the trafficker or he might get recruited into County lines or maybe he already has or maybe HE is the county line recruiter and we’ll have to move house and change our identities to get away from all of this and Social Services will take my other children and and and and SO I HAVE TO GET HIM TO SCHOOL.

What if, what if, what if.

You can’t live like that. You can’t breathe like that. You have to find a way to stop it. It will eat you alive. It is completely understandable – if you have been where we have been then your ability to catastrophize pretty much any situation in under 0-60 will be well developed. If it was an olympic sport, I would be up for the gold medal. What has helped me ( apart from CBT, which really did help me) is to practice the art of breaking things down, and keeping my sights on very short time horizons. Tomorrow is another day. Deal with it tomorrow. And actually, if that isn’t short enough, then I’ve even thought about getting through the next hour, the next task, the next conversation. At one time I thought that getting AJ to finish his GCSEs was the most important thing, if we can get him through that, I thought, it’ll be alright. It seems ridiculous looking back, such a random thing to focus on, and actually, you think these things matter but when it comes down to it, it really doesn’t matter. Just keeping him alive, that’s what mattered. Matters. Everything else is a bonus. 

It is, it is, it is. Staying in that moment, right now, not imagining what may or may not happen, not dwelling in what was. 

I have trained myself to try not to look back. Raking over past memories, longing for the time before the Terrible Awful, when he was just a small child and everything was easier. Those memories to a great extent have been filed away. I dropped my guard last week – I found myself gazing out over the sands to the sea at Holy Island – such an unspoilt, peaceful sanctuary. “This reminds me of those holidays when they were little” I whispered, the words catching in my throat, the last emerging as a sob. I bit my lip and steadied myself. Don’t look back. “Are you ok mummy?” asked little M, and he put a protective arm around me “please don’t worry” and I swallowed that emotion in a single gulp and said “I’m fine” with a thin, watery smile that fooled no one.

I’ve said before, some years ago I put away all the photographs that had been on display on the house. I couldn’t look at them, couldn’t bear to be reminded of the child I had lost. It feels a little easier now, but generally I don’t allow myself to wallow in how things were. I need all of my energy to deal with how things are. My days and weeks and months are divided into tiny units of time, and individual tasks. My eyes are no longer cast down, nor are they looking up. I don’t dare to imagine, I keep them straight ahead on the task in hand. That is what works for me. 

Writing has been a great release. I recently wrote a post that was so shocking as it emerged from my keyboard, so disturbing and painful, that I am not sure it will ever see the light of day. Even though all of that knowledge, all the memory and feeling has been lurking somewhere inside me, its not new news, somehow the physical act of writing it down and then reading it back felt pivotal. And so it is that my writing is not entirely altruistic. I am not just looking to share our lives in order to normalise yours, I am also sense-making, self-soothing, vomiting, if you will, onto a page. A stream of consciousness. Looking my anxieties and fears square in the eye, opening up and sharing our story has without doubt been one of the most liberating and cathartic choices I have made.

It is generally not considered polite or acceptable to talk about so many issues – death, mental ill health, childlessness, I could go on. We sign up to this unwritten code – and then we become complicit in the charade of everything in the garden being rosy. Is that what we want to bring our kids up to think, to expect, to be prepared for? People are roundly criticised for putting it out there – Ben and Marina Fogle for talking openly about stillbirth, Chrissie Teigen for talking about miscarriage, so many others on so many issues. It’s sad to hear Marcus Rashford say that by sticking his head above the parapet to talk about child poverty, he was leaving himself wide open to trolls. He expected it, and of course they came. All of these people have been branded attention seeking, negative, scare-mongering and even opportunist. I think this kind of reaction stems largely from fear. If only we could be more kind, more compassionate. If only we could all hold our opinions more loosely.

Others will say it is brave to talk with such openness. I see it as searing honesty, helpful to many, and I hope with time it helps the healing process. For me, writing isn’t brave. It’s a compulsion. And being as straight about where we are and where we’ve been is also important to me, for my own benefit, but I’ve learned that it’s also helpful for others. This is all within the bounds of what we have agreed, as a family, as our boundaries. I do believe we are all the sum of our experiences but unlike many people who would say, I wouldn’t change things, I would. Of course I would. I wish with all my heart that we haven’t journeyed the path that we have, but I can’t change that, and it has today made me the person that I am, with all my strengths and imperfections. I am older and wiser, strangely both more hopeful and also more jaded. I don’t have any answers to offer anyone, or sage advice. I can simply be straight about what I know, what I have felt, and what I think, and I am not ashamed of our story. It could have been anyone. It is many of us. We are a strange tribe, but we are a tribe. It is not for me to say that everyone should talk about it, just if more of us did it would feel less underground, less shameful. 

Every now and then someone will say something that chimes with such resonance, it takes your breath away. A friend recently said to me “You can’t spend the rest of your life standing under an umbrella waiting for it to rain”. And just like that, I thought, yes. How absolutely true. Into the sixth year of our journey, AJ is now (legally, at least) an adult, it is time. To step out of the shadow, to peer out from under my umbrella, to begin to tread less fearfully into the whatever-comes-next.

So. I will not spend the rest of my life standing under an umbrella waiting for it to rain, but I will probably forever carry one, just in case. And you, my friends, my tribe; for what it’s worth you you can stand under my umbrella with me.