When there’s nothing left

My words escape me recently Henry, I feel like I have no words to describe how I feel, what is going on, all that is sitting with me right now. I am on this kind of auto pilot where I go out in to the world I do what we need to do, I work my days that I am working, I go to the gym on the days I have PT, I go to the shops as we need to buy food, I eat, I cook sometimes, but it is meaningless, I just do it because. I put on a ‘brave’ face to everyone Henry as it’s what I ‘need’ to do or am ‘expected’ too, no one wants to see the sad person especially around such a festive time of year.. I mean “isn’t she finished being sad yet?”

I have no fight left in me, I am the bird that’s lost the ability to fly, the boxer who can’t get back up in the ring, the horse with the badly broken leg, I am the woman who no one knows what to say to anymore as it just seems like the ‘bad luck’ if that is what we can call it keeps following me. Henry what do you say to the person who has lost their child and then their next awaited baby they wanted all within the one year, I feel like I am too broken for this world.

Any hope I had has just completely gone, weeks away from Christmas and no hope in sight, not an ounce and I just can’t get my head around how we do this, I said to my psychologist “I don’t know what to do” but really what can we do but feel what we are feeling and try to talk ourselves in to getting through another day.

The big wound that losing you left Henry the one that is like a big gaping hole inside me, its had the scab ripped right back off again, any parts that were beginning to slowly heal to repair a little, the skins been torn off and its opened right up again bleeding and raw. Having this miscarriage has brought me right back to where I was when I came home without you. I knew repairing would take time, I knew this wound was way to big, take time to repair and would always leave pain and a massive scar as losing a child doesn’t ever leave you, there’ll be triggers, reminders, memories and moments for the rest of our lives. I didn’t expect though that anything else could happen to take what little part had began to repair and rip it right back open again.

I have been thinking about how? how we get through Christmas, what do we do, I said to your Dad the other day I know I would have already been organised for Christmas with you, I would’ve had it all ready as that is me it’s what I like to do. I decided that we should put together a gift to donate to charity for a boy who would be your age, one that wouldn’t normally be fortunate enough to get a gift this Christmas.. fortunate what a funny word in a situation like ours, we are fortunate enough to have good jobs, a roof over our head, your fur sisters money for food yet we are not fortunate enough to have you our beautiful baby boy here with us and to watch you grow as we should be.. I saw a saying that said ‘Dont confuse my grief with ingratitude’ and it’s so true… While I am grateful Henry for our home, food on the table etc I am still a grieving mother who just wants more than anything in the world the one thing she can’t have and that’s you.

So the other day I searched for a romper I had bought for you while I was pregnant, I remember the day I bought it, I had walked in to this store to get a gift for a friend who had just had her baby boy, I looked and looked at all the things, I picked out a romper I really liked for her boy and another gift as I took it to the counter the lady said to me, that particular brand is buy one get a percentage off a second item, I was going to say no but I thought to myself I liked the romper so much I could get one for you… I picked the next size up though as it was a summer one and the organised me thought I would need one that would have fit you for the summer. So I found the size and bought it.

I looked and looked through your room as I know I had placed it somewhere your Dad came home to find me crying in your room as I searched he asked what was wrong I explained to him what I was looking for, he helped me find it, I held it in my hands looking at it as the tears streamed down my face the material was so incredibly soft it took me straight back to that day and the joy I had felt choosing it out for you. The smile had thinking about when you would wear it. Yet you never got too. I placed it aside and thought that would be the start of my gift to donate.

The reason for choosing that Henry is that your Dad and I had planned a four gift rule, not something we made up but something I had seen and we liked the idea of ‘Something you want, something you need, something to wear and something to read’ We had also planned you would get to open a book every Christmas Eve and that we would all sit on the lounge together with some chocolate and to read books to you. So I thought why not do the same for another little boy, and hopefully bring some joy to him and his family.

I picked a book that I had already bought for you too, there’s a set of books called ‘Thats not my’ they are a set of simple hard cover books that have lots of different textures through them perfect for little fingers and to explore with the senses. I picked one of them off the shelf and thought to myself they would have been so good for your age at Christmas eight months and you would still be setting teeth and like to chew on and hold things so it would have been great for you.

I spoke with your Dad the next day and we made our way to the shops to pick out the ‘something you want and something you need’ this shopping trip ended up a lot harder than I thought it may Henry I didn’t realise how incredibly hard it would be standing there, looking at seeing the toys all the things we could have bought for you but never get the chance too, Your Dad and I looked together I thought about what you may have wanted, something I will never actually know I would have loved to get you something for the beach but this store didn’t have that so instead I looked at the beautifully crafted wooden toys picking up a tractor your Dad nodded, a wooden tractor I imagine you would have picked up in your hands, you might have thrown it on to the ground to hear the sound it made, we would have gently sat with you on the floor showing you how to push it along, you may have smiled you may have tried to take it back from us. I know your Dad would’ve made sound effects to go with it to make you giggle.

I stood looking for something you need not quite being able to find the right thing, Your Dad then said to me “can you hurry up” I instantly became upset thinking he was getting impatient I walked to the counter with just the tractor and paid so we could go, we walked outside I began to walk faster than your Dad as I was upset. He pulled me back I can’t even remember the words he said I argued with him that I was just trying to do something nice, just trying to do something to try to somehow help us but help someone else too, to make it feel like we had done something for you for Christmas in honour of you… it was in this moment I actually looked up at your Dads face and saw the tears in his eyes. I saw the sadness the hurt and he gently said to me “I just couldn’t look at all those things anymore” It was in this moment Henry that I realised I can’t….. No matter what I do how hard I try I cat in any way protect your Dad or I from the hurt, from the pain, from what feelings Christmas and the many days ahead will bring.. none of it, it’s there and we can not hide from it, nor can we be sheltered from it either.

I quickly went and got a teether for the something you need and we left to come home, once there I got out the special wrapping paper I had ordered with palm leaves on it as it reminds me of you and I carefully in the best way I could wrapped all the items in to a gift, As I did so I thought about how you probably would have at the age you would have been enjoyed the wrapping paper more, I thought about how you may have laughed as we helped you tear it open, I thought I wonder how your giggle would have sounded, I wonder who you would have been growing to look like. I still wonder everyday and probably will for the rest of my life. I hope this gift brings joy to a little boy, and that without knowing they may talk about where it came from and thats almost as good as talking about you.

The thought of your sibling Henry had given us some hope for Christmas, now I don’t even want Christmas at all.

I’m so exhausted every day Henry, I still travelled for work last week for a meeting and after that I came home absolutely wrecked, I was still bleeding from the miscarriage, I had to face people in my team that I had not seen yet and wonder about how they might be with me how they may react… That was a really difficult task and I know people do not know what to say, but there was only two people who actually acknowledged you and that was on the second day. The rest probably thought it may upset me I guess, but truth is it hurt more that they didn’t acknowledge you. I am not blaming them they are not to know what’s right or wrong, but it’s just how I feel. I did have one person say to me “Oh well you are looking very tanned and relaxed” …. 😦 ‘really’ I thought to myself in my head… ‘what do you think I have been doing been on a 6 month holiday?’ I didn’t respond like that though I just said “well that’s not how I feel”

After we finished out first day of the meeting I rang your Dad, instantly I began to cry “I can’t do this” I said to him “how can I keep up, remember all that’s gone on all the changes and do my job when I am like this” he gently reminded me “One day at a time just do what you can and communicate when you can’t” easier said the done though Henry for someone who likes to be seen as doing their job well, who likes to get it done I am so reluctant to say “I can’t” I don’t want to be that person who cant.

I went to dinner with my colleagues that night and everyone’s dinner but mine started to come out, I sat I waited and when it didn’t come out one of the girls went up to enquire about it, I went up when she wasn’t returning to find they had lost the docket with my order on it ‘No dinner for you Kristy’ I just thought to myself ‘this is your life’ one thing as simple as diner order not being placed but it had to be me.

After dinner I eventually walked back to my the hotel as I was exhausted one of the girls had asked me to text her to tell her I got back ok. I did so and she later text to ask if I was ok I told her how I felt, I told her how I had no confidence in myself and my abilities anymore, How I worried I wasn’t capable as I once was, how I was concerned about what happens if I need to come back full-time or do visits I am not ready for. She texted me back to tell me to go easy on myself that it was massive step I had taken coming to this meeting and being away from home let alone everything else, she said how much she saw me in the meeting that day the way I spoke that I knew what I was talking about and that me was still there, we chatted some more before I went to sleep.

On Sunday afternoon Henry we had been invited to Jerrymara estate for Christmas Drinks, Your Nanny and poppy know the owners and they were kind enough to invite us all along for the afternoon with their other guests, it was such a beautiful place Henry, the scenery, the gardens so good to sit outdoors and be able to enjoy it all. Everyone there was so very nice and I must admit just sitting back and listening to others stories was a little bit needed.. They didn’t all know us so not everyone there knew about you. Later in the afternoon we did get asked if we had any children and Henry one thing I have decided recently is that I can’t not acknowledge you so I was honest and I said “We had a little boy Henry who passed away” the people who had asked were kind, they were sympathetic and although its hard I felt happy that I had acknowledged you and your existence your Dad was too.

The one thing about Sunday for your Dad was the helicopter there, I have already told you Henry how much he loves helicopters and to see him smile from ear to ear as he looked at the helicopter was so nice to see, I think it made his day to be up close to one and look inside. I am actually surprised we managed to get him home to be honest and didn’t find him later in the afternoon asleep inside or pretending to fly. Our hosts for the afternoon were so beautiful and have incredibly kind heart, Kate regularly donates to a range of charities and is a woman after my own heart as she loves animals like I do. The highlight for your Dad may have been the helicopter, the highlight for me was their beautiful dog called Jet, he was so very lovely and got lots of pats from us.. He was a rescue and a little overwhelmed by all the people there at one stage, which meant I got to take him for a walk, and spend some time with him.

Such a beautiful afternoon with lovely people Henry. It was nice to listen to what people did and find out all about them. One young couple with some beautiful children have just started a business making and selling mead, Joel who had started this had brought some along and allowed us to try it, it was beautiful to drink, they have named the business Hunter and the Harp which is after two of their children, they now have a third but I know they’ll include them somehow, its nice to see people who are trying new things and to listen to Joel talk about the business with passion, he was humble and also you could just tell he loved the adventure they were embarking upon, it’s so wonderful to see people try new things, we also spoke to the owners of Charc & Cheese who create gourmet platters boxes and grazing tables and a lady I didn’t get to talk to much from South Coast Experiences who offer planned and unique experiences for your visit on the south coast.

Yesterday marked a big day in parliament Henry, well its big for some of us. Yesterday evening the report from the national inquiry in to stillbirth was tabled to parliament with a range of recommendations to help reduce the rate in Australia, the report identifies how the rate has not changed in over 20 years, it identifies that in cases families have been failed by systems and health professionals, we certainly were… There is so much in this report discussing the impact that this has on families, the fact families are not at times supported through the trauma of losing their child. As Kristina Keanelly addressed the parliament one thing she said stuck out to me greatly, “It’s a particular sadness a singular grief one so hard to fathom that I can understand that collectively as a country we have considered stillbirth to sad to talk about as a public health problem” its time for that to change, as these families need more support and we need to work on ways to prevent this from happening, six families a day is way to many and so many cases it should never occur.

I am so glad that by putting in a submission Henry we could contribute and help to identify the some of the problems which exist and help to form a part of the solution too, nothing can stop it from happening completely, but there are plenty of measures identified within the report which can assist to help reduce rates, which can also support families who do go through the pain, There are stories Henry of families losing their job as they were expected to return to work straight away, I am so blessed I could still take maternity leave at half-pay, not all have that option, though we had our own circumstances, medical negligence, no follow-up bereavement care and support as we should have received and a range of other problems identified, it’s not good enough.

I have seen this morning the government has committed 7 million to stillbirth research, campaigns and for the government to be able to start implementing some of the recommendations in the report this is a great start, to help see families not have to go through the same trauma we are. The report talks about the lasting impact on parents psychologically.

Intangible costs

3.24 The intangible costs of stillbirth are more difficult to quantify, and as such have tended to receive less attention from policymakers. However, it is clear from research that they play a major role in families’ circumstances and have a rippling effect across communities.

Stillbirth exacts an enormous psychological and social toll on mothers, fathers, families and society. It is estimated that 60−70% of affected women will experience grief-related depressive symptoms at clinically significant levels one year after their baby’s death. These symptoms will endure for at least four years after the loss in about half of those women.24

3.25 Researchers have noted that intangible costs contribute to the longer-term economic burden of stillbirth as a result of the higher level of anxiety and depression in families experiencing stillbirth compared to other families.25

3.26 The PwC study analysed five intangible costs associated with stillbirth in Australia: the impact on mental well-being; relationship with partner; relationship with others (family and extended family); other children; and the effect of financial loss. It found that stillbirth had a profound psychological impact on parents.

Many suffer from grief and anxiety, the effects often lasting long periods of time. Experiencing a stillbirth caused stress and anxiety in subsequent pregnancies and some parents received counselling to deal with this increased level of stress. Stillbirth put considerable strain on marital or partner relationships. Different grieving patterns between men and women, blame, anger and resentment were often cited. Some couples separated after the experience.26

3.27 Other flow-on effects for families may include increased fear and anxiety amongst other children, and social isolation.27 These psychological effects may adversely impact on their daily health, functioning, relationships and employment.28

Costs can no doubt be attributed to each of the above issues by economists, but how do you quantify the impact of a stillborn baby on its family? Without wanting to be overly dramatic, Joshua’s death traumatised me in ways I cannot always describe, and impacted on the mothering of my other two children. I was diagnosed with breast cancer six years after Joshua’s birth, and although there is no evidence, I strongly believe the grief I experienced after Joshua, and the stress of my subsequent pregnancies played a role in this. I was 36 at the time of diagnosis.

3.28 In addition to the emotional grief and trauma of stillbirth, bereaved families are often faced with longer-term financial burdens that extend well beyond 12 months after the loss.30

…I keep needing to see new specialists for things that we’re still trying to find answers for. Now I’m struggling with infertility, so I’m going through IVF, which is partially Medicare rebated. Counselling is another thing that I’ve utilised. It has been very helpful to have access to the mental healthcare plan, but I don’t think it’s enough to subsidise 10 sessions a year for something that’s as profound and ongoing as this.

 

Reading just these lines in the report alone, for this to be acknowledged the effect it can have, to read these words helped me to feel a little less alone. To look at this to want to address this to no longer sweep it under the rug as its to sad or awkward to talk about will improve things for families in the future. I know how incredibly hard it was to write a submission to share your story and address the terms of reference, I think it’s so incredibly brave of all the families who did this to do so, I also can’t thank enough the professionals who also placed in submissions and who recognise there needs to be change.

I am battling Henry, I am battling so many conflicting feelings right now, It is so incredibly hard and its hard to allow myself to feel them as they are feelings that are not me, they are ones I struggle with as they are not in my nature. I find myself feeling so incredibly envious of my pregnant friends, of the ones with little babies, of women I see walking the street with their prams, or babies in their arms, I feel jealous of the friends who get to announce their pregnancies with all that happiness.. I said to my psychologist today I am so incredibly happy for them but then I feel this too and its so hard, “It’s because those feelings are not normally in your nature” she replied “But they are perfectly normal in a situation such as yours it’s not like you are jealous of that they have a fancy car or more money they have worked harder for and you haven’t it’s entirely different and ok for you to feel how you do” “But I hate feeling that way” I said to her “I absolutely hate it” the things is Henry I can feel happy for them and sad for us, for what we’ve lost, for what we are missing out on and I just have to let those feelings co-exist. But I hate myself for it Henry even if it’s natural to feel that way, I have never been one to be an envious or jealous person at all.

I am just existing, here I am existing, trying to do my best, trying to maintain contact with others the best I can, trying to work, grieve, tend to the house and do ‘normal’ things when really our lives are far from normal. We use so much energy Henry extra energy getting ourselves up and out of bed and doing these things that I just feel tired all of the damn time, I feel bad when I can’t message someone back straight away, when I don’t have it in me, as I want to still be that friend… you know the one that is there for others that they can rely on. I feel like I’m failing at everything at the moment as I am not living up to my own expectations of who I think I should be. That includes being your Mum, I feel like if I don’t get myself together and do something great for you that I am failing you too.

I have had people say “I bet you can’t wait until this year is over” but it makes no difference Henry, I wish the magical strike of midnight on that clock on New Years Eve would mean that it would all somehow be better but it wont, whats happened follows us in to next year too, there wont be a day we wont miss you and next year takes us to all sorts of places such as your first birthday… Thats a day I am not sure I can do or get through.

P_180426_RRayner_Henry_ (23)

Author: Letters to Henry

My husband and I live on the beautiful south coast of NSW, Australia. We are currently learning to rebuild and navigate through life after the loss of our son Henry to stillbirth due to medical negligence in April of this year.

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