In The Trenches

It’s funny when people tell me that we’re doing so well and they’re legitimately shocked. It really is. Funny because the expectation is we fall in a heap and can’t function all day every day and funny because no one really knows how we’re doing. Trust me, we have those ‘fall in a heap’ moments. Often. But we can’t stay in those moments. We have a son who needs us, just as much as we need him. We have bills that need to be paid. We have a home that needs to run. We have to function. We don’t have a choice. The alternative is even more grim in an already grim situation! 

Each day we have to make an active decision to get up and get moving. It’s hard. Really hard. Some days I want to just sleep all day, that way I won’t cry when I walk past Maisie’s nursery all set up or when I see the photos of her in our lounge room or when I see the paperwork from the council to pick out the type of plaque we want on her grave site. Paperwork I’ve left in the drawer for a few weeks until I could actually bring myself to look at it. Deciding on what type of design, colour, material and wording of the plaque for our newborn’s grave site. Who the hell wants to make a decision like that? I guess we’ve been slightly desensitised to it all when I showed Scott one of the pretty blue granite headstone options in the brochure and we both commented that it was a nice colour and would look really good next to the green grass..... then continued getting ready to go to football training. This is our reality. We have to make these decisions. We have to discuss things we should never have to discuss. 

People have commented to me a few times that I ‘must be doing ok’ because I am doing so much at the moment and am able to smile. Right. So that’s the sign of doing ok. It’s as if people see us in the moments when we are ‘normal’ and think we’re totally fine and we have just moved on with life. I’m not exactly sure walking through the supermarket crying and screaming or sobbing at school pick up is really appropriate or beneficial so of course I’m going to be ‘normal’ when I’m in public or when I need to be. People make their assumptions about how we are coping by what they see. What we let them see. They don’t see the days when I cry so much I can’t breath, or the nights I ask Scott to just lay with me and I cry until I can fall asleep, or when I have to leave a shopping centre quickly and get to the car because I feel so overwhelmed by the amount of women pushing prams and I just sit in the car and get really angry and of course, cry. I can’t do the things I would normally do in life since Maisie died. Not yet anyway. Being around lots of people, too much noise, even walking into certain shops where I bought lots of things for Maisie from is hard. There are so many triggers everywhere I go. I can’t even look at my news feed on Facebook because of the amount of people having babies! I’m so happy for my friends having babies, of course! But that doesn’t mean it doesn’t hurt. I’m glad they’re not going through this. It’s just never ending. And that’s the thing! It’s never ending! For the rest of my life I will remember her. Remember that day. Remember the pain. Remember laying on the bed while they pushed it as fast as they could to get me to theatre and covering my face with my hands because I knew the seriousness of the situation and couldn’t even believe that this was happening to us. We’ll forever grieve the constant milestones we will miss out on. There’s no escaping it. I will know when it’s the day she was meant to start school or the day she should be having a birthday party. You know you’re in a pretty average place in life when you have to google ‘ways to celebrate your child’s birthday after they have passed away’. Turns out people call the date your baby passed away an Angelversary. Something I really didn’t think I would ever have to know. I was just interested to see what our future was going to look like. The things we will ultimately end up doing to include her in our life. We will have Christmas and birthdays each year without her and I have so many questions. Do we buy her a present? Where do we put it after Christmas day? Who actually opens it? It wouldn’t be practical to buy a one year old appropriate present but what else would we get? Do I keep all of that stuff in a box? What happens with it in the future? We will have this collection of cards, gifts and memory items that we will keep with us forever. Not that that is a bad thing, but it’s a pretty grim thing to have. Not only will we have the emotional issues to carry around with us for the rest of time, we will have so many physical items to look after that will inevitably just make me cry when I look at them. My point is, why the hell do we have to do this? Why is this our life now? Why are there so many people in this world who never wanted children or who treat them poorly who seem to be blessed with the ability to have multiple kids with no problems? This really has changed my perspective on life, the importance of certain things and to be totally honest my (already sketchy) filter between by brain and mouth has definitely been modified. I have less ability to hold back opinions and seem to be much more willing to argue my point of view on topics, especially relating to some rather big issues in life. Don’t get me started.

 

People have asked me when I’m going back to work and are surprised that I’ve had this long off work since she passed. She only died 11 weeks ago. Unfortunately, grief doesn’t have a set time frame. If it did, I’d be marking it off every day on my calendar until the day I could wake up and not feel like I was living in a nightmare. It doesn’t work like that. My psychologist reassures me every time I see her that right now I’m just in the trenches and the waves of despair will become further apart and less intense. That’s exactly where we are and we’re living in survival mode. We are just trying to function in a way that we don’t stuff our child up for the rest of his life and we manage to keep our marriage and relationship strong. The two most important things to me. We know it will improve, well we hope it does. That’s all we can do. Hope. We can’t see into the future. We can’t predict what it looks like. To me that is so frustrating. We had everything planned out. Where she’d go to daycare, school, how we would get Hudson to and from football training, get him to school and other events around when she’d need to sleep. How we would make sure she got all of the opportunities that Hudson has had, what shifts I’d need to work when I finished maternity leave so we could make sure we could still be there for Hudson at school and spend as much time with Maisie as a family as possible. Not only are we grieving the loss of our child we are grieving the loss of what we thought our life was going to look like. I never imagined I’d be visiting my baby’s grave site instead of trying to get through the newborn phase. I went there for the first time since her funeral. That was an experience. Standing next to a pile of dirt knowing my baby was buried there. It doesn’t get much more real or devastating than that.

 

While we’re dealing with things like visiting a cemetery, working out how to explain to people that yes we did have a baby but she passed away, answering insensitive questions and trying to work out what our future will look like we are also dealing with people telling us what they think would be good for us. No. Don’t. Just no. Don’t tell us that just getting back to what we did before this happened will make it easier or tell us that going to certain places or attending certain events would be good for us. It’s hard to even commit to meeting up with a friend because I have no idea how I will feel when that day arrives. Remember the whole waking up and feeling like it’s a nightmare thing? Well some days I wake up and can shake that off and get going. Some days I can’t get rid of that horrific feeling and just need to be at home in the quiet. Most people understand and for that I am thankful. We are navigating a world that we never expected to enter. A world that I wouldn’t wish on anyone. 

It still really is unbelievable to me that this is what we are living. That this has happened to us. It’s even more unbelievable how common neonatal death and stillbirth really is. In 2017 in Australia 2911 babies were either stillborn or died within 28 days of birth. That is nearly 8 babies each day. How can something that is so common and so serious still have such little support and awareness? Families are torn apart when this happens. Mothers and Fathers can end up suicidal, siblings can have lifelong struggles, marriages can break down, extended family can pull away because it’s just too hard. Why are we not throwing so many resources towards these families? So many (nearly all!) of the amazing services that have been established to try and help families that experience this are all volunteer organisations. Generally they are families who have been affected by a loss that start these organisations because they know how important it is to have support and comfort and the only way to get it is to do the hard work yourself. Why? Why should it be up to these families when they are in the trenches of grief to push themselves to try and make a difference? It’s because this is not a glamorous topic. It is really uncomfortable. It’s something that people don’t want to think about because really, people just don’t think it will happen to them and when it does, society assumes that there is this fabulous network that just falls in to place to catch these families and support their every need. Well, there isn’t. Another issue with there being so little awareness around this topic is how other people view how people should be grieving, how they should be moving on and what they should be capable of after a certain time. People have expectations around when people should be ready to return to work, return to normal activities, be able to be happy and easy to be around and when they should just be ‘over it’. I’m glad these people look at it this way though. That means they’ve never had to experience anything like this. They’re the lucky ones. If only there was more awareness around neonatal death and stillbirth, employers, friends, colleagues and extended family members would really understand how hard it is to get through this and what they can do to support the family when they’ve experienced the worst possible time of their lives.

 

We’re thankful for the love and support we’ve received from the people in our lives. Although when something like this happens, it really does show peoples true colours. To be honest, I have somewhat been surprised by the amount of amazing people who have reached out and been so supportive of us  and also a bit disappointed in some people who have pulled away. I understand this is an awful situation for them to deal with and they process things in their own way but you know what? It’s not really a walk in the park for us either. We’re dealing with things that just make you sad and question how you’ll get through certain situations. We have a nursery with drawers full of folded clothes, baby socks and sleeping bags, a cupboard full of nappies, wipes, toys and cot sheets. A nursery I see every day. A place that was meant to be a beautiful room for our desperately wanted little girl. Instead, it’s a room that gives me crippling anxiety. Anxiety because I know one day I’ll have to empty those drawers. I’ll have to take out the nappies, wipes, clothes and all of the baby things I stocked her room with. That will be another thing we’ll have to grieve.

Everyone deals with tragedy differently. There’s no real path that it follows. Grief can look like so many different things. We’re just trying to filter our grief into something bigger and meaningful. That makes the awful things we have to go through that little bit easier. We’re trying to close the loop of a broken system. We’re trying to make sure other families can have the support they need and can have better outcomes with a brighter future.

 

I’ve already made contact with some GP practices and hospitals that would like us to present our story and help educate staff on ways they can improve the experience for families that suffer the loss of their baby. We’re working on providing information for families to help them navigate this nightmare and to try and make sure they know they’re not alone because this is one of the loneliest things you can ever experience.

 

We didn’t get to hear our baby cry, we didn’t get to see her open her eyes, we didn’t get to see the excitement on our sons face when he met her. All we saw were his tears and absolute devastation that his longed-for little sister wouldn’t be coming home with us. I didn’t get to see my husband have that connection of finally having his daughter that I know he so desperately wanted. As much as I’ve been through physically to get to the point of having a baby, he has gone through it emotionally and wanted our little girl just as much as I did. Seeing him staring at her, resting his chin on the end of her cot and crying has to be one of the hardest things to see. I had dreamt of the day she was going to be born. Clearly it didn’t go how I imagined it would. I thought about what it would be like to finally hear the sound of her cry after so many years of trying and failing to have our baby. I’d dreamt of the relief I would feel after feeling like we would never get our happy ending and it was finally coming true. I’d thought about the moment Hudson would get to hold her and be that big brother that he desperately wanted to be. I’d thought about what it would be like to be looking at her, touching her and finally having her in my arms. I’ve realised nothing ever really goes to plan. We never imagined this would be our life. We never in a million years thought we would be a statistic relating to neonatal death. We definitely didn’t think we would have to learn how to live life after losing a child. It sucks. It really sucks.

 

So hold your little ones a bit closer, for a bit longer. Be thankful for what you have. You never know what your future will look like. Enjoy it now. I initially was getting angry at people for getting frustrated over small issues or for acting like something pretty minor was world ending but I’ve realised that they must never have experienced something so life changing like losing a child and that’s great for them. No one should have to go through this. If being stuck in traffic or being inconvenienced about something is making you angry please just remember that life could be so much worse.

 

I’m thankful for my beautiful family, for my supportive friends and for the fact that I have the ability to make change. We are working hard to try and get things up and running so we really can make a difference to other people’s lives. That’s the reason I am writing so openly about our experience. I never intended on telling our story to the world or letting people into the really low times we’ve experienced but it all starts with people sharing what this really is like. Not just pretending that things are ok or by hiding away so people don’t really see what’s going on. The only way people will understand the gravity of this is if they actually are let into what happens behind closed doors. I’m hopeful that by sharing our story and doing what we can to make change we will help another family in need. Even if we only ever end up making a difference to one family, then it will all be worthwhile.

 

For those of you that know Scott and I, you’d know that we like to laugh. We like being silly and we try and find happiness in everything we do. Hudson is essentially being parented by two kids that look like grown-ups. We like it that way! We love having fun and our house is always filled with laughter and silliness and this absolute tragedy has really shaken our foundation but we’re determined to restore that.

 

We’ve realised there are positives that have and will come from this. We’re hopeful for our future. Our Maisie girl will be the reason other families will get a little bit more comfort and understanding during such an awful time and she’s the reason that we will value and appreciate so much more in life.

 

We love you Maisie girl!