In the early months after Miles was born I was given the opportunity to write a letter for @from_the_other_chair’s incredible blog. It could be to anyone, about anything; so I decided to write to my sister. So Sophie this is for you.
Not a week goes past where someone doesn’t comment to me that it must be so hard being surrounded by so many babies. I don’t deny that sometimes it really is – they can ignite our grief, make our arms physically ache a little more than they already do, stir up all sorts of emotions and a kind of jealousy that feels very foreign to me. Why isn’t my baby here too? It just doesn’t make sense and doesn’t feel fair at all.
But for me personally they provide a source of comfort, love and immense joy at the very same time. I have so much love to give and I feel so blessed that I have two perfect nieces in my life to be on the receiving end of this. With every encounter my heart grows a little bigger and a little stronger.
I know from speaking to other bereaved parents that this isn’t always the case, with some losing family or friendships due to them finding it too difficult to be around new babies – and this I can completely empathise with. I read something today that stated ‘when a stimulus triggers extreme feelings of pain or anxiety this is in fact a result of trauma, NOT jealousy’ and the trauma caused by the death of your child can take years to overcome. I can completely see how the trauma and grief for your own baby can overpower every other emotion you would normally feel and make it impossible at times to be happy for anyone else. Continue Reading
If you could go back to the old you, what would you say? What words of wisdom and compassion would you try to impart? What snippet of the future would you dare to share? With any loss, there is a ‘before’ you and an ‘after’ you. They are both the same and undeniably different. There are secondary losses to navigate but with time you may learn to notice some gains. Some shards of light in the rubble. Old you may not believe this could be true. But the seed of hope is a powerful one.
In this poignant letter to her past self, Emma Hartley shares the things she wishes she could have told herself when she received the devastating news of her daughter Eilys’ terminal diagnosis. You can find Emma on Instagram at @hashtag_emma
Dear Me after we got our daughters terminal diagnosis,
I know that you feel like the weight of this diagnosis is going to crush you. I know that you have no idea how to begin to process the things that you have just heard. I know that you were expecting the worst but I also know that you really weren’t expecting the worst at all. The mind plays funny tricks on you in situations like this.
I know that your brain will struggle to process a terminal diagnosis. How could it be true? Eilys is so full of life, so happy and so present. But then if you look a bit closer, you can see it. She stopped hitting milestones; she is 6 months old and she can’t support her head very well any more, she barely moves her legs and she has never sat up or rolled. The battle inside your head will keep striking painful blows but it will get easier. You will eventually come to terms with it. It will just take time. And don’t feel bad that you aren’t accepting things, you are just protecting yourself and that is fine. You will keep doing it. You won’t see her deteriorate because you will always try to put a positive spin on it. You will know deep down but at the same time you won’t allow yourself to dwell on it. Continue Reading
When Orla died, I became aware of this quote that has been associated with Ronald Reagan who himself lost a child:
“When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them.”
As a lover of words, and as someone who devotes their life to finding ways to which to understand and describe things, this quote stuck with me. We have so many words in the English language and yet not one that captures what it is to be a bereaved parent. ‘Maybe it’s because it is so rare’ some may say. Yet it is not. There are thousands upon thousands of parents who are left questioning their identity in the wake of child loss. Who feel invisible to the rest of the world. And Nicole is someone who refuses to allow this to continue.
Nicole is the founder of Our Missing Peace, a charity that aims to spread awareness of pregnancy, baby and child loss and to help bereaved parents know that they are not alone. Through Nicole, I have become aware of the term Vilomah, which is Sanskrit for ‘against the natural order’. Because that is what baby and child loss is; it is against the natural order of life. Nicole is campaigning to make this word more widely used and to give all parents who have experienced loss a clear identity.
I will never forget the doctor who told me that Orla had died. I cannot bring her face to mind, bit when I saw her coming out of a hospital room some months later, I knew instantly who she was. I remember her gentle tentativeness, her hand touching my leg, the sound of ‘I’m so sorry’. I remember her administering the pessary to induce labour and her willingness to sit and talk through the procedure. She was young, probably quite early in her career. But she was kind. I can’t say the same for every person I came into contact with, and I know that so many parents have had very varied experiences. However, I am grateful to have had someone who was able to show compassion at the time that I needed it most.
As someone who provides consultation and supervision to a range of professionals, I know full well how little emotional support is available to many medical staff. But reading This is Going to Hurt (Adam Kay’s book) sucker punched me with it even more. Every single day, the staff that we so value in the NHS are dealing with life and death. New life and death. Death before life begins. And yet they are often given little space to process or debrief. Continue Reading
When we announced our pregnancy after Orla’s death, the relief from others was palpable – a sense that there was going to be a happy ending. The rainbow after the storm. Yet nine months is a long time to live in terror, knowing that you can reach the final hurdle and still come home empty handed. Pregnancy after loss is an incredibly complex and fraught time; saturated with intense fear, renewed grief and other overwhelming emotions, each day can feel like an endurance task. Having someone else to carry some of this is essential. Priceless even.
In this letter, Jess captures her gratitude for the support their doctor gave them during their rainbow pregnancy. This is what person centred care is all about.
Jess is mum to Leo and Eli and works tirelessly to support bereaved parents, as well as fundraising and campaigning to raise awareness of baby loss with the hope of saving more babies lives. Jess can be found here and on Instagram @thelegacyofleo and she hosts a weekly #BabyLossHour twitter chat every Tuesday at 8pm.
To the doctor who held my fear during my pregnancy after stillbirth,
I didn’t recognise. We met you, properly for the first time, a few months after my son died to discuss what had happened. But I didn’t recognise you. I didn’t recognise you from that day – that moment when I discovered that he had died. Died, in the moments when we had been anticipating his arrival the most. One day, past full term. You were there, just to confirm that our life as we knew it then, had ended. That his life, in its entirety, had ended. That his tiny, beating heart that was once just a small flicker on a screen, was now still, silent, non-beating.