Lately I have been taking part in some research projects. There have been two main ones, first a DVD for mothers and fathers who have a baby in a Neonatal Unit (NICU), and secondly a booklet for Tommy's about premature birth.
Part of the second project involved telling our story to a professional writer. And you know, I think its the first time I have cohesively told the story from beginning to continuous end to someone in a completely impartial role. And you know what, it sort of hurt.
When Joseph was in hospital and I was so stressed, caught up in it all, and wondering if it would ever end, people would say "one day, you will forget all about this time". And I used to hate it. How could I ever forget? The fear, the loneliness, the isolation, the anger, the grief. But you know, yesterday brought it all flooding back, and yes, I had forgotten.
I was never one for keeping keepsakes. Other mums left hospital with lots of different things from their baby's journey. I left with virtually nothing. I didn't even keep one of the incredibly small nappies. Last week, when at the consultant, I asked for one, so I could keep it, and take a picture.
I really had forgotten just how small Joseph was at birth. I was asked yesterday to recount our journey through NICU. I had forgotten the fear, the reality of being sat down by a consultant and being told that my baby might not live through the night. I really had forgotten about the nitty gritty of life in the unit. I recalled how I used to catch four buses if I went twice, and six buses if I had a break for lunch in town, and eight buses if I went twice a day. I forgot about the madness of organising the redecoration of our flat whilst Joseph was critically ill. I forgot about how we hated being in the flat at night as there was a great gaping hole in our lives. Our baby was not with us.
When I support other mums and dads I always say the same thing, that that time in hospital is so surreal, you have a baby but you don't have a baby. The crib is empty, you may have bought your pram but you can't use it. I remember how weird it was to have our car seat fitted and we drove around for a couple of weeks with a car seat, but nothing to put in it. I wanted a big teddy bear or something so it didn't look so empty.
And today, both my husband and my mother have said the same thing "look at what you have now, everything is fine, you have a happy toddler". But my feelings today aren't about the present, and yes I know how lucky I am. I know and am painfully aware that not everyone takes their babies home.
But despite the PTSD and the months of feeling awful, I don't think I have grieved. I did grieve for my lost pregnancy, but I don't think I ever grieved for the loss of that normal newborn experience. I think though, the relationship I have with Joseph is different because of what we went through in those early months, and that's just fine by me, because I think he's amazing. (That's him looking at the "silly nappy" as he called it!)
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I'm approaching T's first bday and the anniversary of her birth is hitting me harder than I thought it would. I though to a certain extent we breezed through it all but on reflection, I am looking back a lot more and have regular random flashbacks to random places such as landmarks on the journey we made every day to the hospital where T was sent. The thing is I also can't remember that much of the actual important detail and this bothers me. I am forgetting the terminology, I am forgetting what it felt like to have a baby so desperately ill and of COURSE this is good, this is what should happen, you can't dwell on the past, on the sheer terror you felt. Yet there is a small part of me that is annoyed at myself for forgetting, because this was such a big deal to us, the most important thing that has ever happened. So why is my brain not allowing me to remember? I want to remember just how lucky we are, just how hard a journey it was and how amazingly amazingly grateful I am when as you say Kylie, there are lots of babies that don't come home at all and this makes me feel so very sad. I'd say I have an element of survivor guilt to be honest.
ReplyDeleteOur journey may have been different to that of a 'normal' birth and I hate to use that word, and my husband always says to me you have to look forward, but sometimes looking back is all my brain allows me to do.
Too true. I started Molly's blog because I knew I would forget - the rawness of our emotions and experiences as we go through that terrifying neonatal journey are just so powerful that I believe the mind makes us shut it away...until something or someone makes you actually sit and think about it. It's something I try to bear in mind when I'm talking about parent experiences...yes I've got opinions and I speak to other people about their experiences, but I'm looking at things now with the benefit of almost 2 years of hindsight and an awful lot more knowledge than I had when Molly was born. It's difficult to truly see things through the eyes of a new parent who has just stepped onto a NNU for the first time, but it's important sometimes to allow yourself to remember - however horrid that can be. For me, it's the particular smell of the hand wash in the hospital where Molly was born that brings it all back. Be gentle on yourself lovely lady...and treasure that 'silly nappy'!
ReplyDeleteKylie, although I can never know what it must have been like to have a premature baby, I do understand your greving for your pregnancy and your need to grieve for your newborn days. I knew how special that time should've been as when we had Eva it was amazing. I know also that saying look at what you have now makes no difference. I really don't have any words if wisdom I;'m afraid, just wanted to let you know understand XxX
ReplyDeleteI think one of the problems I had, and I'm going to blog about it, is that on the unit I was Polyanna. I was happy everyday. I walked in there with a smile on my face, and I just loved my baby and got on with it. That was my reality, and I had to live it the best I good. The writer asked me if I had regretted being like that. I don't think there was another way for me to get through that time, but maybe there was......And I think that's why now that I'm letting myself "go there" I'm realising how much we missed.
ReplyDeleteHelen, I think we all have "survivor guilt" and a friend reminded me yesterday that often, when someone has lost a baby, what makes them happy is people enjoying and loving their babies.
ReplyDeleteThe first year is an odd milestone, full of happy and sad memories, and then there's what I call the "dead space" between the actual birth date and due date. Mentally I found that hard, I don't think I'd really realised how long 3 months is until that first year, and the enormity of what happened hit me.
I do think, and this an awful broad sweeping generalisation, that dad's are better at just living in the present and forgetting about what happened to their babies. I know Corey doesn't feel it as keenly as I do, and that's hard too.
Yes I think that's very true, that with two years hindsight and a lot more knowledge, you do forget. I know I've offhandedly spoken about heart murmurs and PDAs and I have to work to recall that fear when the doctor said "there might be something wrong with Joseph's heart", to me now PDA's and heart murmurs are all part of the journey, but to a new NICU mum, its devastating, and then you learn and you process, and it becomes part of your new normal too.
ReplyDeleteI can relate to the handwash, but you know what's lovely I have a new memory of that. Whenever we go back, Joseph and I stop at the handwashing station, and I squirt my hands and his hands and we have a big wash and talk about germs etc. Very loudly. And we have queues of people washing their hands too!
Fascinating blog Kylie, I can really feel the emotion coming through. x
ReplyDeletei totally agree with you Kylie. I know with Ian when i try and talk to him about it he just shuts off. He's told me he don't like talking about it because he gets angry about what happened. Which i guess i've got to except and hope one day he will open up to me about it.
ReplyDeleteIt's Lola 1st birthday next Friday and I've been feeling all different kinds of emotions, i tried to talk to my boss about it the other day as i wanted her birthday off and as all the labour started when i was at work i know it will be an emotional day if i was to be there. She has let me have the day off but her comment was "well Lola is still here and safe and well" which i thank god every day that she's here but sometimes i feel like people think i'm just being silly about it and they cant understand why i cant move on from it. I feel like they think because she is still here i should be grateful. I know that people have been more unfortunate than me and have lost their babies and even that people have had earlier prems than Lola was. But why should that mean that i cant feel emotion to what happened to me and Lola. It wasn't just Lola that nearly died I nearly died too, i know that probably sounds selfish but to think that i nearly left my family and to think how they would cope how ian would cope. It makes you look at life in a different way. And i think people forget the fact i nearly died too. To be told that you could die in half an hour was awful all i could think about was Katie at home and what would Ian say to here. To lose her mummy and her baby sister i just cant seem to move on from that.
The other thing i feel is guilt i feel guilty that i never cried when she was born i never cried the first time i saw her the first time i had a cuddle. All i remember feeling is numb I didn't know how to feel, i didn't want to bond with Lola in case she was taken from me, somehow i thought if she was taken from me i would cope better if i tried to stop my self from bonding with her. But as any mother you cant help but let your love grow for your child. I regret not asking more questions i just wanted her to get better, and when i look back i think i didn't ask certain questions because i was to scared of what the answers would be. I regret i wasn't there for her enough not physically but emotional and mentally.
I just want to give you a huge hug. It IS hard, we've been through a life changing experience, and something we never expected to go through. When your pregnant, you don't think about it at all, do you? You expect to get huge, to have a labour, to get to do all the fluffy new born things.
ReplyDeleteI nearly died too, my consultant said I was about six hours away from total organ failure. And that's frightening. No one tells you that pregnancy can kill you, do they?
I think you need to let go of the guilt. The brain works in mysterious ways. Mine went the opposite, and I bonded straight away, but then I got accused of being too positive and loving him too much and not understanding that he was ill, so you can't win.
You've done an amazing job, and you love Lola now with all your heart and its the now that matters.
I've just found your blog, this rings so true to me. My twins have just turned a year old, and although their birthday was a wonderful celebration, the next seven weeks are looming at me with a whole host of anniversaries I don't WANT to remember. Thank you for your posts.
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