I must admit, I thought it would stop. I thought a point would come where the anxiety would cease and the old person would take over again. The person I was who kissed better and brushed off sickness and hurts and assumed that they'd just be better next day.
Two an a half years on, I'm now acutely aware that I'm operating a shut the door policy on many aspects of grief. Of all of them, the legacy of 11 days in scbu is probably the greatest of those. I had no idea of the impact of those days when I was there, I didn't foresee how deeply they would change me.
By and large, even if we mentally cross ourselves when we go past the special care baby unit sign in hospital, special care is seen as a safe place, a place where babies are too sick and too small but get taken care of, eventually graduating to the leavers board and a carseat picture – and home. We don't really think of it as a place that babies go into and do not come out. We don't think of it as a place where all the movement and urgency is carrying them in, fleeing from one place to another with a desperate baby in arms. With stillness at the other door. And I'm just beginning to see how deeply, deeply frightening a place it is and how much I haven't written about it, or spoken of it, or acknowledged it.
Our unit was beautifully kind, loving, thoughtful, caring. If I had to do it again, I'd go back there and if I have to be grateful for it, I can be grateful that Freddie lived out his life there. But even with all this time since, I cannot make my mind rest on those days, think them through, read the notes and put moments in order or join the dots. I can remember flickers of things, a nurse with a kind word, another with a bustling, annoying but caring manner, a note tucked in the cot from a midwife, a baby crashing across the room, another tucked in a carseat doing a stress test, the nursery, moments of normality (if normality is talking to a mother about how your baby will probably die) in the kitchen while making tea and cleaning pumping parts. I can remember a room change and a nurse guiding me to a new bedside, a cleaner rattling about the room complaining she was getting a cold and my head screaming at her to get out then; photos, refusing a bounty bag, the nurses station laughter behind me as I took video footage of a waking baby I now can't bear to watch.
Those are the good bits.
And I can remember knowing I should say no to a drug and not doing, calpol for a hot baby, the leap of my heart when we had our first cuddle, that I held him up against my shoulder, my left shoulder, where I used to hold babies. Now I use my right. I remember washing his mouth with a sponge and thinking how pointless it felt to do things he'd never appreciate, refusing to learn to feed him by tube because I knew he would never come home, nappies, swelling, charts I couldn't read, words that floated over and around my bewildered, normally astute head and made no sense. Drug names. Pneumonia. MRI. Scan. EEG. Seeing swelling. Not able to understand why he was safer not having milk. Pumping milk, bottled with a purple written label that he never drank. I remember suction noises, sitting night after night while the hospital slept in the company of his nurse and it filtering in slowly, so slowly, that the smaller babies were more well than Freddie and that my baby had a nurse all to himself. I remember a doctor who scanned his brain and saw no damage, a brain scan that saw normal patterns, a baby who just wouldn't wake and doctors who said 'he'll do okay', 'some damage' followed by 'severe damage' followed by 'difficult to predict' followed by 'probably going home with a feeding tube'. And we're caught out by death. But I wasn't. And if I knew better that time, might I not again?
I remember being carried, half carried, down a corridor by Max to be put to bed by midwives with sleeping tablets, huddling on a bed pleading with a doctor who shared my name not to make him stay alive when he didn't want to, not to put him back to a pointless sleep with more drugs he couldn't fight off. I remember a do not resuscitate meeting, witnessed, where I pleaded my case for my son not living and was quietly assessed, reminded if my motives were not considered acceptable that he might be made a ward of court. Gently, so gently, but firmly said. I remember the sound as he forgot how to suck, the sound of a suction machine, the oxygen dial creeping slowly up, the boy with the chubby face and covered limbs slowly dwindling to thin and frail. Clothes off, clothes on, did the colder room kill him? Did he know me, the day he choked and the lights went on and he opened his eyes and looked on in shock but still didn't cry? Was he frightened? Why did I go home the night he was awake and looking at me? Why didn't I see it was the beginning of the end, not the end of the beginning? When he was awake, what was he trying to say? What did I miss?
And did, dear god, it hurt to die?
Shutting the door is best. There is no way to describe that 11 days, no way at all. Not even the pictures make sense. The handful of photos, still not sorted or arranged neatly in order. I'm saving that for a time when the pain is bearable. Some of the pictures are of a tiny newborn, some seem to be of a chubby, fat, bigger boy. Some are of a wizened little man. I hardly know him from the photos and I can't remember what he looked like. Just snippets. Feelings. I can't remember the order things happened in, or who visited, or when or how or why. When I went home, when I came back. Which days were good or bad. It was just a long, long lonely 11 days. A roller coaster where things changed from muted joy to worrying blood test, to optimistic movement, to catastrophe so fast that I will never trust a trend again. It's simply not possible to ride a curve any more. I know curves can mean nothing. I know you can go out for a walk in a park, leaving a baby in a cot that seems poorly but stable and come back an hour later to find him dying.
How do you recover from that?
Legacies.
My body does a fast track from okay to panic now; a shortcut has been forged, a short circuit that means I can hold on as tight as I can for as long as I can but when the current finally faults, I'm just back in a room I don't understand watching the world crumble in seconds.
It changed me profoundly. Made me fatalistic. Made me stoical in a way I didn't used to be. Made me silent in stress. Made me shut down if I think I don't want to hear. Changed me from wanting to know to not wanting to know.
It changed me because while I now believe my instincts, I don't trust my judgement. Babies lie. Health lies. Machines and medics don't know everything and can't always save us. Something can come and take my children any time it wants and I can't stop it.
I lost my ability to believe in myself and make a call. I've even lost the ability to decide what dose of paracetamol to give my children or myself. And one thing is for sure, I lost the ability to work it through and heal myself by talking, whining, being self centred and emotional.
Shut the door. Nothing frightens me as much as knowing how much trauma there is hidden inside me from those 11 days. I have no idea how to sort it out. I don't even want to. I reckon I can get through to dying without taking it out and looking at it.
***
This week, this last two weeks, Bene has been ill. He had a cough and a cold first and once he started to get better, he got a temperature. On our third visit to the doctor, because no baby I've been in charge of has got better on their own from a temperature that roasts them but leaves their hands and feet freezing, he was given antibiotics for a chest infection. Of course. Because he would get a chest infection, the very thing that inexplicably carried his brother off when the antibiotics just didn't work, didn't save him.
Yesterday he woke up puffy and blotchy and covered in a rash. He is, of course, the first of my children to be allergic to penicillin. Sigh. We went back to the walk in centre, an institution I've spent way to much time in recently, kicked off by Amelie having the closest thing to an actual asthma attack she's ever had and having to be given a nebuliser. Back again, with a sick but okay baby in my arms, having been summoned in by phone with 'don't panic but come now'.
I am at least learning my limits. I got to the desk, gave his name and whispered 'I am very, very close to panicking. Please don't make me sit out here with all these people'. I've learned, this last two years, that people who work in medical establishments can normally tell the difference between a person being a pain and a person genuinely about to lose it and I was through the back, in a chair, with a nurse I made cry inside of thirty seconds, not entirely reassured by hearing Bene's name was marked 'alert' anyway.
The day before I told Max, wrote down even, that something about Bene felt a bit wrong, something unfamiliar, that I couldn't recognise, just not right. He set off the breathing alarm he sleeps on twice that evening but neither of us could see why, just that he waited too long before breathing in. Something didn't feel right, even though nothing could be seen. It's mildly comforting to find I still have good instincts, even though I chose to stay home and not act on them. Turned out okay this time.
My heart can't tell the difference between this picture above and this picture below.
And really, who can blame it?
I held my breath through that post Merry. My heart goes out to you. There is no right or wrong way to grieve or to live, so just keep on keeping on.
I came over to read your post from a tweet by Jen. I have no words, I can’t possibly imagine how you feel. We had a brief visit to ICT of a week when the twins were born, but it never entered my head that I would loose them.
I hope writing it down in such an eloquent way “helps” you in your grief Merry xxx
That was beautifully written. Heart wrenching. I am so sorry.
Sitting here clasping my hands in silent prayer to who knows who or what. I do not know what to say, but can’t say nothing. I want to tell you how I have conflicting feelings about SCBU. But I got to bring my baby home, so that’s not fair. I want to tell you about my fears whenever the girls are ill, but I got to bring my baby home.
I don’t know. Yes, we are powerless in the face of some things. But maybe we have the power to make things as good as we can, when we can. Maybe that can be enough? For a bit.
T xxx
Honey. I’m gonna call you. Xx
There are no words.
Grief is a process that has to be gone through and it is different for every person. Please do not give yourself a hard time about the the way you are dealing with it. It is your way and that is the right way.
I am sending you lots of love, because it is all I can do.
Big hugs
T
Love, lots of it, just for you my lovely friend.
I don’t know what to say but couldn’t say nothing, this post I read with my heart pumping real hard & tears streaming so I can not even begin to imagine what it is like for you, I do understand the not being able to remember things when you are going through a traumatic time, the details of when my daughter was fighting meningitis are still a blur & I can not fully remember what happened, maybe that is for the best though, who knows. xx
I don’t know what to say, but don’t feel I can say nothing. Hugs.
Like Joanne, above, I couldn’t read this powerful post and not say something, even though I’m struggling to know what to say. You’ve stopped me in my tracks this morning so I will just say I hope little Bene is on the mend now xx
Huge hugs x
I really don’t know what to say…I’m sure there’s no way I could say it right anyway.
But thank you for writing this.
In a way it helped me to cement my decision for not having any more children.
I feel for you and send my biggest hugs. Keep on trusting that instinct of yours it seems to know what’s best ;0
Hun, I just wanted to say something, but I don’t know what. Just keep believing in yourself, big hugs, emma x
Merry, I don’t know what to say. Grieving is a long process and to come out the other side of the hell you went through with Freddie will be a journey, that you will accomplish. I relate to a lot of what you write about, and did a lot of re-living when I was regularly visiting at GOSH.
You write so very very well, but dammit, neither you nor anyone else should have to write about this sort of pain. But pain is everywhere and either we grow ‘stronger at the broken places’ as the title of a book I love puts it, or we break. I do not see you as broken Merry and eventually your pain will make you a stronger and wiser person. Tbh, I can see this happening already.
Oh dear, that sounds so trite, I didn’t mean it to and can’t find words to put it better … I’ll just send some hugs instead and get well vibes for Bene.
:hugs: Just lots and lots of :hugs: for you all xxx
Hugs to you and Bene xxx
That rash photo is horrible 🙁 Glad he’s on the mend, hope he is unworryingly well asap.
Who can blame it indeed? I can’t even pretend to know how you and your family have dealt and coped with such a sad situation and the passing of dear Freddie. My daughter was in NICU and later at six months old, with pnemumonia in PICU which she had a cardiac arrest after appearing to turn a corner. For us, and it never ceases to amaze me how unfair life is that for one family it’s one ending and for another a sadder one, things turned out ok after a worrying few weeks. I struggled, and still do 18 months on to an extent, to think rationally, trust my instinct and trust myself and abilities to mother so I think you’re amazing. I hope Bene gets better soon, and I’m so sorry things happened the way they did with Freddie. Many hugs x
Oh Merry, I have thought about and wondered abut that time, those eleven days. I can’t know what that was like. Florence didn’t make it past A&E, and I’ve never gone in to detail with anyone about those hours, not even Woody, it’s just too nightmarish, and all so muddled in my head.
I’m so sorry Bene has been poorly. I do understand how that feels, and this part:
“My body does a fast track from okay to panic now; a shortcut has been forged, a short circuit that means I can hold on as tight as I can for as long as I can but when the current finally faults, I’m just back in a room I don’t understand watching the world crumble in seconds.
It changed me profoundly. Made me fatalistic. Made me stoical in a way I didn’t used to be. Made me silent in stress. Made me shut down if I think I don’t want to hear. Changed me from wanting to know to not wanting to know.
It changed me because while I now believe my instincts, I don’t trust my judgement. Babies lie. Health lies. Machines and medics don’t know everything and can’t always save us. Something can come and take my children any time it wants and I can’t stop it.”
Love to you. x
i have treid several comments, and they all don’t really say what i mean, even when coming back to this. just hugs and love again x x i understand the simple binary of stress on or off, and nothing in between. x x I was asked how you were doing, nd didn’t really know how to answer. how are you supposed to be doing? what is the normal? i answered as best as you could x x
I cried just reading this and want to say something but don’t have the words. Nothing seems right. Just sending love and hugs, silent prayers and thoughts. x
Oh Merry. I read this first thing this morning, tucked up in bed with my R. And I did have a long old sob. I’m just so sorry. I’m so b***** sorry. Your dear Freddie.
So glad that Bene is ok. I’m so glad that you said what you did at the reception desk. I usually have to go through the process of losing it first. I’ll try your method next time 😉
My girls’ days in the hospital are a time that I re-visit and re-visit and re-visit. Perhaps because, as you have described so perfectly, there is an odd quality to my memories of that time, a flicker of things indeed. There are bits that will not come back to me and so I think I keep on chasing them? Kind of the opposite of your shut the door policy? Not a day has gone past in the four years since G died that I don’t think of that hospital, those rooms, the people who worked there, the equipment, the noises, the smells. I never, ever thought that she would die in there when I walked in through those doors. And wonder if it hurt. Why did I sleep? Why did I leave? Did it hurt? Did it hurt? That is the question that I keep returning to. Oh, I just so hope that it didn’t hurt them.
I’m certainly fatalistic now too My instincts, my gut, my intuition. I feel like I can’t really trust them anymore. And my heart can’t tell the difference either. Any crackly breathing or wheezing and I pounce.
Your sons are both absolutely gorgeous. Sending love xoxo
Don’t have the words but I’m here. (((Hugs))) xx
Oh Merry .. dear God this post .. I don’t have words, but I want you to know I read it. xo
thank you all for your lovely comments. I think, writing this, made me realise how much I process things by just talking them over and over till they form a story. There is something disconcerting about this whole element of Freddie’s life not being something I have made into story form. I don’t like that I’ve been unable to do it.
I hope there will come a time when I can.
Hi Merry. This post brought tears to my eyes. Daisy was only in SCBU for 29 hours before she died, but I can relate so well to your feelings and fleeting, muddled memories of that time. I too expressed milk for Daisy, that she never got the chance to drink. After she died, I often thought, if only I’d had the chance to feed her, perhaps she’d have had antibodies to fight the infection, perhaps she’d have survived. I have to work hard not to dwell on “what if”s and “if only”s. I’m so glad Bene is alright.
Debbie x
Oh Merry. I had to set this one down and come back today to pick it up and finish it. I couldn’t make it past the good bits. As another said, I held my breath through the entire reading. No wonder you haven’t been able to take it out, unpack it and deal with those 11 days. I can barely read a partial summary of them and it’s not even my life and my boy we’re talking about here.
Please know that all the way over here, across the ocean, I am with you and thinking of you and your family. Hoping Bene improves quickly. Hugs to you, mama. xx
Much love. Thinking of you xxxxxx
Oh Merry, I can’t imagine how hard it has been for you having all this trapped inside you. My most horrible time was a matter of minutes not day after day after day. Your boys are so alike (and so beautiful) it’s understandable that seeing Bene get sick would set off all kinds of alarms for you. I hope that writing this helped just a little.
I’m so, so sorry, Merry. The whole ordeal sounds like it was incredibly traumatizing, and my heart breaks for you. Did they really need to question your motives? That really makes me burn in anger on your behalf. And not surprising at all that your anxiety goes from 0 to 60 in no time at all considering all you’ve been through.
Gorgeous boys, Freddie and Bene both. I wish so much Freddie were here, and I hope Bene is now on the mend. Sending love. xo
I found you through Catherine W and I am so relieved that I did. I am going through the shock of this right now. The shock of knowing that there are layers upon layers of trauma that exist from losing my daughter that I have never truly worked through. I am so sorry you are in this place but I thank you for sharing so honestly, I needed to know it isn’t just me.
Jessica, I am so sorry. I will do my best to connect up with you ASAP so we can talk. I didn’t mean to miss your comment and would like to chat.