I was pregnant with Kaitlyn for 39 weeks and 4 days. Today it has been 39 weeks and 4 days since she died. Today is topsy turvy day, the switch day. Kaitlyn has been dead for longer than I held her inside my body.
When it comes to trauma and sadness, bodies hold at least as much as minds do. My body knows that this week is a big deal and it has been letting me know in all sorts of ways – strange ligament-y twinges, achy hips, mild nausea. Aching arms and a hole in my middle. All things that I had in pregnancy or in the earliest months after Kaitlyn died.
Since returning from California I have been silent a lot more, in person and in writing. I thought it was because I had nothing new to say. I’m no better. Life is hard. I have no new language to try and describe those things. Then I realised that I have plenty to say, more than I could ever fit into the amount of time for which I would have someone’s attention to try and explain. But it has all been locked up inside, stuck beneath a cold metal layer of physical shock and trauma, of trying to cope and function. For almost three weeks I was almost completely out of action. Dragging myself out of bed over an hour late to force myself to go to work or to parent, then falling straight back into bed as soon as I could. So many tears I thought my face would wash away. The worst thing by far was the raging cortisol that flowed through my body day and night, never giving me a moment’s peace even in my sleep; I described it to one person as feeling like my blood had been replaced with pure stress hormone. I would wake up in the night, boiling hot, mind and heart racing and immediately burst into tears even before I was fully awake. Of course after a few nights of this, both S and I were exhausted, and exhaustion never makes anything any easier. I don’t think either of us are very sure how we got through those three weeks or how we kept any kind of normality going for M. I guess that’s what you do for kids, there’s an extra “kids” gear that keeps on turning even when you can’t.
Naturally the people who could see me asked if there were triggers, a very sensible question. There were – post-holiday blues, HSIB updates, a huge complaint letter to submit. Returning to work. The usual daily brutality of the nursery run. The usual freezing and crumbling of my insides at a baby’s cry, the burning rage of seeing any baby born after Kaitlyn, the sadness at siblings. Any day is full of a thousand triggers. But this was worse than any of that; I knew the answer, but I independently decided that no-one would understand. I went to my GP, who responded exactly as I thought everyone else would. “I really think you could benefit from an antidepressant” he said, several times. “But that isn’t my problem” I replied. “It’s my hormones.”
Ever since Kaitlyn was born my cycles have not returned to normal. The first half of the cycle, pre-ovulation, is now characterised for me by this elevated cortisol and complete inability to function. Literally the day after I’ve ovulated, I turn into a different human being. I wake up different, without the lead weights on my chest. I feel like I spring out of bed, able to face the day, able to think about living, no longer consumed with thoughts of not wanting to be here any more. Now of course it’s not actually like that, my life will never be like that again – but comparatively, that’s how it feels. From what I understand from reading, speaking to my therapist and others with first-hand experience, depression does not operate in this way. That being the case, it’s not depression that is at the root cause of my problems, therefore an antidepressant is not the answer. But hormones – hormones do work in this cyclic fashion. Anyone who has struggled to conceive or stay pregnant will no doubt have become an expert in the inner workings of a woman’s body, and I am no exception. I have learnt about different types of oestrogen and the effects of low progesterone and how cortisol and reproductive hormones affect each other. I finally understand my cycles and body in a way I never have before and am baffled at just how little we teach girls about this when they’re younger, both at school and within families. At school we teach them all sorts of drivel that they’ll never use again, but we don’t teach them about one of the most critical factors in their physical and mental wellbeing for the rest of their lives. But that is a blog post in itself. Everything I have read and learnt leads to one conclusion – a potential hormone imbalance, which could be temporary after all the shock and trauma my body has been through or could signal a bigger issue. It’s also possible that it could be treated, and that is definitely worth getting to the bottom of.
After twenty minutes of cajoling I finally stood firm. I said that I would not even entertain the idea of antidepressants until my hormone levels have been checked, so if the health service really wanted me on those pills it was going to have to do that blood test first. I said that it was irresponsible to ask me to lose two more babies before I could have a simple blood test; these are my children we are talking about, even if the world does not see them that way. No woman I know would take that kind of risk with their babies’ lives, if they already suspected before conception that there was a possible problem that could negatively affect the pregnancy. I get that the NHS takes a different view if you have had a miscarriage, but your body has returned to its normal state again – that is not where I find myself. I have a very kind GP and I could see that his advice came from a place of caring and wanting to ease my distress. He looked at me in exasperation and ordered the blood test for a couple of weeks’ time.
All of this continuous battling is a trauma trigger in itself. I go in ready to argue, and that spikes my cortisol levels. Then the fight itself takes me right back to the day I was arguing with the hospital while I was in labour, which is one of my worst flashbacks. A simple GP appointment leaves me exhausted. In eleven years in the NHS I have heard so much talk about how we should put the patient at the heart of care and treat patients as experts by experience…NHS speak for we need to listen to people and not dismiss them. But somehow when it comes to women’s health, pregnancy, women being trusted to understand their own cycles and symptoms and bodies, we dive straight back into the 18th century. I’m half surprised no-one has brought out their fainting couch and asked me to waft the smelling salts – but gone are the days when I allow anyone to dismiss my views or diminish my voice, no matter how kind they are trying to be. Perhaps these tests will come back completely normal and there is no hormone issue. That would be great, really great. It doesn’t mean my experiences and descriptions are wrong and it doesn’t mean the GP is right about medication. Now to be very clear, I have absolutely nothing whatsoever against antidepressants. They serve an incredibly important purpose and improve quality of life for so many people; asking for and accepting that kind of help takes a strength that most people can’t realise and that I respect beyond measure. It’s simply that I don’t believe that they are the right solution for the problems I’m experiencing. That is not based on any kind of pride, but of a deep desire to treat what is at the root cause, and not just the symptoms. It’s a decision based on observation, constant personal insight and logic. S agrees with me, which helps enormously as I respect his opinion and logic enormously.
On top of all of this, I have had three sessions of trauma therapy through our local Improving Access to Psychological Therapies (IAPT) service. Whoever in the NHS came up with this service idea was definitely on to something. Therapy doesn’t solve everything, but it is slowly helping me to address the things that most impede my day to day life – namely the triggers and symptoms of PTSD. This week, for the first time since Kaitlyn was born, I have been able to have and enjoy a bath. Such a small thing, but such a huge deal for me. Through everything that we have investigated into Kaitlyn’s death, we know that it is possible that Kaitlyn died while I was in the bath on the Saturday morning. The thought of having a bath filled me with acute anxiety; my therapist noticed that my breathing rate sped up and I looked panicked when she even suggested it. So we put together a plan. On day one I had to run some hot water with bubbles and just sit next to the bath (not a full bath, mind you, I do still care about the environment!). Each day a new step would get added. Day 2 – sit with my hand in the bath. Day 3 – stand in it with my clothes on. And so on, until on Day 7 the task was to have a bath. It’s all about brain retraining – teaching the brain that bad things don’t happen when I get in the bath, that it is a safe space. My therapist calls it “reclaiming my life”, which is a touch gung ho for me but I go with it. Now in the case of grief and trauma you get a complicating layer on top – whether or not you actually want to enjoy a bath again. And being a parent whose child has died, my guilt ultimately trumps everything. The person I have always been has always adored baths and found them really relaxing. The post-Kaitlyn’s-death me thinks “what on earth would Kaitlyn think if she saw me giving such a crap about having a bath, when she’s dead??” People say that Kaitlyn would want me to be happy. I struggle with this so much and it has always sparked a rage in me. In my mind, Kaitlyn is a tiny baby; all she wants is to be in my arms, feeding, cuddling. Surely she doesn’t care about anything beyond that, and she can’t have that. My therapist asked me to think about M – how does M respond when I’m sad? Is she happier when I’m happy, or when I’m sad? Then she asked me to think about babies – do I believe that babies pick up on a mother’s distress? Do I think that affects their happiness and wellbeing? Of course I knew the answers. It still isn’t really the same, because innocent Kaitlyn and had her life taken away from her for no reason and that changes everything, beyond all logic and reasoning. But it did at least move me more into the headspace of allowing myself to want a bath, that maybe that didn’t make me a terrible mother and a selfish human.
S and I have both found that our trauma memories have extended beyond Kaitlyn’s birth to cover the whole period of September to January. Last week I needed to travel to the Isle of Wight for work. The whole drive down to Southampton something didn’t feel right, and I couldn’t put my finger on what it was. When I reached Southampton I acciedntally pulled into the car ferry terminal instead of the passenger ferry. And suddenly there I was, right back in September, ready to catch the ferry with S, M and my big bump. We went on the most lovely break when I was 34 weeks pregnant and we were so happy, relaxed and full of anticipation. It was the last time we were truly, uncomplicatedly happy. When I say I was right back there, pulling into the car park last week, I don’t mean I remembered it like a memory of something that happened – I mean I was right back there. It was completely terrifying and very disconcerting. Let’s just say I did not manage my Isle of Wight visit. Every now and then S will say something like “do you remember that programme M watched a thousand times over Christmas? I don’t think I could even look at it now.” The trauma memories grow and grow, and leave us absolutely dreading the upcoming dawning of Autumn.
People say that time heals. With trauma, it doesn’t. It adds layers of complication, confusion, complexity. You struggle for memories that fall through your brain like sand through a sieve – but you know they’re in there, because they impact on every moment of your life. It’s like that feeling you get when you wake from a horrible nightmare but can’t quite remember what happened – mulitplied by a million. From the moment of impact, the brain can no longer function properly, no longer processes or stores memories as it should. Time alone cannot heal that. If someone in your life experiences a trauma, please don’t tell them time will heal. And don’t tell them to get medication. First and foremost encourage them, if you can, to seek specialised therapeutic support for trauma.
Whilst thinking about triggers, I got to reflecting on what it’s been like to interact with others during this time. I’ve been more confronted than usual with views on how I should grieve and what I should believe, and I find that hard. But for the most part, people seem more terrified than ever to talk about Kaitlyn; I am slowly coming to understand that this is at least as much for their own sake as mine, that some people need to shield themselves from the strength and complexity of our pain. I am certain that this is a totally subconscious process for them, and I know that people’s intentions are good. When they see us, they see functioning people on the outside, because most of the time our masks are good enough these days. People don’t want to disrupt that, because they care about us. I get that. And then there is the added complexity of dealing with a mother and a father – I want to talk, S wants to keep his head down and get on with things, that’s just our natural way. But when you really dig down beneath all this, it is also so that others don’t have to deal with our pain, our sadness or our hearts pouring out all over the dinner table. I have to believe that people know that the pain is always, always present for me, that they don’t really think I have ever forgotten, and therefore that they are not really “reminding” me. I have to believe that people know I want my daughter remembered, talked about and celebrated. If I stop believing that, my rage will engulf us all. S and I never forget. We always feel sadness, all the time. I particularly crave the company of people who can sit quietly and hear my pain without judgement and definitely without solution unless they really, truly understand the world of baby loss. Not for hours at a time, just for a few minutes while I simply state how hard things are, so that I can feel like a valid member of society. But I realise now that that is a skill that very few people possess. I am so fortunate to have not just one but a small handful of friends in my life that have this skill and don’t need to run away from their own discomfort. Sometimes, though, I can’t help wishing I could be whole with more people and in more circumstances. On top of all the exhausting things that I have already described in this post, constantly having to pretend for the sake of other people’s comfort is just another shove towards the brink.
And so, I’ve found that I’ve been isolating myself lately. Sometimes words can cut so deep, however unintentionally. Just those little conversational things where people drop in death and dying as a dramatic device or part of a joke. When they moan about having their kids around in the school holidays. When they say with such sadness that their child is growing up too fast – that is certainly sad, but not seeing them grow up at all is a whole different arena. No-one ever means any harm, but sometimes my cortisol levels simply can’t handle the hit. Sometimes I call it out, other times I don’t have the strength and have to just walk away. Over time I started to shield myself by hiding and not talking. But recently I felt strong enough to start reaching out again, opening up again. And I have been rewarded for that by being reminded of some of the really wonderful people in our lives. Some I’ve known forever. Some I’ve known since forever ago and reconnected with recently. Some I’ve known for less long but who know more about me than anyone else. Others I’ve known for mere minutes in the context of my life but who seem to know just what to say or do. I’m consciously trying to focus on that right now, and not on the things that cut. Sometimes shedding can be a good thing too. I’ve shed a lot of stuff that I should have done years ago, baggage I had been holding onto, links to the past that don’t bring me any joy but that I’ve been too scared to let go, just in case. Now I no longer have the space or strength to keep carrying them, and that is a good thing. That is a gift from my child.
I find I have less time to be with Kaitlyn these days, and that’s hard too. I sit in her garden, which I adore. In the bereavement group that I co-established, we are making a quilt in memory of our babies; it will hang in the Butterfly suite and be used at any fundraising or awareness raising activities that we undertake. I can’t sew for toffee, but I made a square for Kaitlyn; hopefully she will know that the wonkier the lettering, the greater the love that went into the making 😊 Straight after Kaitlyn’s funeral we had her casket flowers preserved and framed; they finally came back a couple of weeks ago and have pride of place in Kaitlyn’s cabinet. I continue to fight for improvements in her name, and to share her story at training days and safety events. I made a video at the hospital Kaitlyn was born in; it will be used in training for midwives. M and I have built little Kaitlyn rituals into so much of our day – we say hello to Kaitlyn when we get to the top of the hill we live on. M is really into making up songs right now, and there is always a verse for Kaitlyn. When we decorate a cake, there is always a decoration for Kaitlyn. Always a toy for Kaitlyn, a heart for Kaitlyn on M’s drawing, a character that Kaitlyn would have loved best. M continues to astound me with her warmth and love, and I will be grateful to her for the rest of my life for helping me to keep Kaitlyn present in our family.
Isle of Wight, September 2018
A Keepsake for Kaitlyn 