In just over two weeks it will be one year since we met our darling Holly. It doesn't seem possible that a year has passed. I feel like although the days have passed and seasons changed, I have just been living the motions, somehow not really being present. Of course, this can't be completely true as I remember, vividly, so much of what has happened this year. It just feels impossible that somehow the world keeps on turning whilst I keep on grieving. I have survived almost a year without my daughter, a piece of my heart missing and that brings its own level of guilt and confusion.
Upon entering the dreaded 'one month until Holly's birthday' I felt completely terrified. I didn't feel ready for it to be a year and I still don't. It is the fear that there will be a sudden expectation for change in my grief for Holly. Will people now expect me to talk about Holly less, find her death less painful and 'move on' (all of which I find a common thought within some people who have never been exposed to baby loss). How could I possibly do all these things when Holly's death remains so raw and vivid in my mind, as if it was only yesterday?
I have come to realise though, that a year is no length of time when compared with a lifetime of loss. It may be the anniversary, her birthday but it is also just a number. An important number on many levels, as it represents a year of my Holly inspiring me to help others but it is also, another day. No magical healing will happen, no 'closure' and no 'moving on'. Instead, it is a day to celebrate and honour my daughter before then continuing to spread her story as her legacy intends.
It is very hard to understand how to even prepare for your child's first birthday, when they aren't here. Do I honour the day as an anniversary of her death, an 'angelversary' or do I celebrate it as her birthday? I have decided on the latter. More than anything, I want the day to be a celebration of my daughters birth. Holly may not be here in person but I think the way her story has helped others, more than deserves a celebration and a recognition that on this day she was STILL born.
So then, how do we even go about celebrating Holly's birthday? It almost feels like arranging her funeral again. There is no guidebook, there is no right or wrong but yet a complete feeling of being out of our depth. My husband and I have decided on putting together memory bags, filled with items that are inspired by our daughter, to give to the hospital on the her birthday. These memory bags will be given to other parent experiencing loss, in a hope to show them that they are not alone. We felt that as Holly isn't here to receive gifts (that we would have undoubtedly spoiled her with) instead we will give gifts of kindness to other families experiencing loss, in her name. The memory bags are not yet complete but I will be sharing these in my next blog.
There are a few other personal touches that we have decided on for Holly's birthday. At her funeral, Holly had the most beautiful flower arrangement. I have discussed recreating this in bouquet form with the florists. They can forever be Holly's birthday flowers and it brings so much comfort that it links to her special day on her funeral. We then plan on holding a balloon release, as we also did on Holly's funeral. There is something quite special about releasing balloons into the air, moving freely, like I imagine our Holly does.
More than anything, I just want Holly to be remembered and to be celebrated. Prior to losing Holly, I wouldn't have known how to act or what to do if I knew someone whose baby had died. So I want to share that for us, please do not be afraid. Share with us, the celebration that she existed. For her existence has been so important, for so many people. Wish her a Happy Birthday, send her a card (if you want to) we would love nothing more than being able to read her messages of love.
Holly has shown me that life can be lived in two ways, with love and with hate. Whilst I do have my fair share of moments filled with hate that she isn't here, I try to live this life of grief with the love she has given me. And so we chose to spend the 7th of September with how Holly deserves to be remembered, celebrating with giving gifts of kindness and with love.
We had to wait a short while before we were able to plan saying our final goodbyes to Holly. We had decided with some gentle persuasion from our consultant that having a post mortem would be beneficial and so had to wait until this was carried out first, which took roughly 2-3 weeks.
On a side note, I just want to talk a little bit about choosing to have a post mortem. When we found out that Holly had complete heart block, we decided then that having a post mortem was pointless as we knew what her condition was. We couldn't see that we would gain anything from having one. However on the day we went in to start the procedure for ending the pregnancy, the consultant discussed our decision with us. She quite rightly explained that scans can only see a certain amount. They can never tell the true extent to a condition or if there is anything else going on that hadn't been picked up. We understood that sometimes a port mortem can't actually tell you anything but at the same time, knowing that we could find out more into Holly's condition made us change our minds.
We didn't get the results of Holly's post mortem until exactly three months later. Sitting down in the clinic after closing hours, we were given a full report on our little girls body. It wasn't easy, a post mortem report doesn't censor parts which parents may find difficult to read. It will tell you how much your baby's brain weighed and it will tell you that your little girl had eggs present in her ovaries. It is an incredibly hard read but what we got out of it made it worth it, for us.
For three months I had struggled with the thought that we gave up on Holly too easily. That despite four consultants telling us Holly wouldn't have survived, maybe she would have proven us all wrong. I agonised, wondering whether the condition killed Holly or we had. However, sitting in that consultant room, I will never forget reading those words 'complete destruction of the heart.' There was never any chance that we could have saved her poorly heart. She would have never been a candidate for a heart transplant that she would have so badly needed, had she survived pregnancy. Holly was already dying and seeing those words have given me the greatest gift in this grief. It allowed me to feel reassured that we did the right thing and has eased some of my guilt. Holly never knew pain and I feel relief in knowing that as parents, we did that for her.
It is so important for me to write this as I would urge anyone going through this to think twice about the post mortem decision. I understand that it isn't the right choice for everyone but for others, the chance of getting answers and that extra reassurance might bring so much relief.
So just over two weeks on, we were faced with the prospect of arranging a funeral. Being relatively young I hadn't been to many funerals, let alone organise one. We decided to go with the Co-operative Funeral Directors as they do not charge for a baby's service. Knowing that they don't charge reassured me that they probably look after a lot of babies and understand what parents need during this time.
Firstly, we had to decide upon a cremation or burial. Not knowing if we would stay in this area forever, we decided on a cremation. We couldn't bare the thought of ever having to leave her and so decided we wanted to have the option to always have her with us. It was around this time that we had even discussed where we might spread her ashes but as time went on, neither of us really wanted to do that. I had initially felt like I needed to rush, to do everything in one go and make all the decisions right away but I have since realised that this isn't the case. I doubt we will ever let go of her ashes now, we certainly have no plans to and that is more than okay.There is no rush, there is no time frame and it is absolutely okay to take your time.
We then found ourselves sat at the funeral home, brochure in hand. I can't even begin to tell you how alien it feels to organise a funeral for a baby. How do you chose colours or flowers or music when this little life didn't even have a chance to show us what it liked? It feels impossible but somehow you do find a way to try and say goodbye to your baby in the way that feels right for you.
Once Holly was back from her post mortem, we were offered the opportunity to go and see her at the funeral home. I knew this would always be an option and before knowing she was back, I hadn't wanted to see her. I wasn't sure I could face saying goodbye to her again and in all honesty, I was scared to see what she would look like.
However, that changed the moment we received the call. My husband had always wanted to see her again and I had a sudden urge to see her too. We even decided on the spur of the moment to take our daughter Eleni, whom at the time was only 18 months old.
I will never be able to put into words the sense of relief I felt when I saw Holly again. There she was, our beautiful little girl. The last few weeks had been such a blur for me, that it helped to see that she was real and that she was back, safe. I can't lie and say she looked the same because she didn't. She had changed but in the moment of seeing her again, it didn't matter. All that mattered was that I could kiss and touch her again. It wasn't until afterwards when comparing photographs from her birth that I could really see the change. It brakes my heart but I wouldn't have changed seeing her, for the love I felt in the funeral home was so completely worth it.
Eleni won't remember seeing Holly but she will always be a part of her life. I took photographs of Eleni meeting her so that one day she can see for herself. The photographs now sit in a memory box ready for Eleni to look through, when she is old enough to know more. I have no regrets with seeing Holly again or taking Eleni. In that brief visit, my heart was at its most complete since losing Holly. There is something incredibly special about having both your babies together, in one room.
Back to the funeral, the decisions surrounding Holly's service, were of course personal to us. As with my previous posts, I want to share in case it can help give other parents ideas of how they may like to say goodbye.
We decided on inviting select friends and family. Those who had been there for us and ultimately those who we felt comfortable grieving with. I think we had roughly 20 people come to honour our little Holly. Initially, I wasn't sure I wanted anyone there but I am so glad we did. It meant the world to us to see that Holly meant something to other people too. The reality hit that she was real and loved by many more than just us.
We had planned on only my husband carrying Holly's coffin in to the service. I was asked if I wanted to and had declined but as the time came, I couldn't not. I needed to do it for Holly and for my husband. We had been such a strong team that I wasn't going to let them down now. So we carried her little cream coffin in whilst Coldplay's 'Fix You' played in the background.
We had a Catholic service at my husbands wish. I am not religious but I felt more than comfortable for him to have this service to bring him comfort. I did however ask him to speak to the priest prior to the service and ask for specific things to not be said. I didn't want to hear that 'it was God's plan' or that 'she is now in a better place' and so that was our compromise. The priest was wonderful and more than happy to tailor the service for us, so don't be afraid to ask for exactly what you want.
During the service my husband delivered a reading and I read a poem I had written for Holly. I was completely inspired by my very special friend who had lost her little girl only 2 years before. I remembered how she had stood up at the funeral with such strength and grace to read a poem. So as soon as we were planning the funeral for Holly, I absolutely knew that this was what I needed to do too.
Holly's service ended to the music 'A Thousand Years' by Christina Perri and we asked for everyone to leave first so that we could spend our final moments with Holly, alone. We then went down to a spot within the baby's garden where we had a rose memorial planted for Holly. A few words were said and then we all let off cream balloons. As odd as this sounds, it was the perfect service and I was so proud of what we did for our little girl.
Throughout the entire service and balloon release we did something which I am sure many people would think 'odd'. We asked my wonderful step father to take photographs for us. Again, I had remembered reading this somewhere and how it brought the parents so much comfort to be able to look back and remember the day. As I am sure most of you can imagine, the day does go by in a blur of grief as you fight to get through the day. I feel incredibly lucky that I have these photographs to look back on. Our time with Holly was so short that having another way to remember her, means so much.
We didn't have a wake or even invite just a few people back home after Holly's funeral. I think we both felt like we needed the time together, to digest what had happened. More than that, we were both just utterly exhausted.
There can never be a guidebook for preparing, meeting and saying goodbye to your baby. Every life, every situation is just so individual. But I do know that I got so much out of reading what other parents had done. I learnt not to be afraid to ask for what you want, as all that anyone wants is for this time to be right for you.
I am now preparing for Holly's first birthday and knowing how we do this, is still just as puzzling. I have learnt on this journey that connecting with other bereaved parents and reading their stories brings me comfort and ideas with how best to honour our beautiful girl. So I will continue to do this and continue to share in the hopes of bringing comfort to other parents too.
Though the seconds, hours and days will pass
We make our promise to you
We will love you until our souls reunite
As our bodies yearn to do
Time is brief and your life was short
But your delicate beauty shone
You touched our hearts, you showed us love
Darling, your angel memory lives on
Through the seasons and the flowing waves
We will look for our little heart
The leaves that dance and the galloping tides
Unspoken bond, we're not apart
Now we know, the true meaning of love
An exhausted heart, a piece of it gone
But no regrets, you will keep it safe
Darling, your angel memory lives on.
On the 7th September 2016 at 25 weeks gestation, Holly was born sleeping after a battle with complete heart block.