October the 8th-14th is baby loss awareness week.
What a tragedy that such a week has to exist; and yet how encouraging to see that we are finally starting to acknowledge this contentious yet important subject.
I didn't want baby loss awareness week to be relevant to me. I wanted to be aware, support awareness, but not have to process the multitude of emotions and all-encompassing grief that comes with it.
1 in 4. A statistic that thanks to these awareness campaigns is becoming universally associated with miscarriages and pregnancy loss. I am 1 in 4. Twice.
Unless you have been in that situation and experienced it first hand, you can never truly even begin to understand what it means. It's different for everyone of course, but for me it is a perpetual roadblock on my path to becoming a calmer, happier, and more accepting person. I can't and don't accept that I am 1 in 4. Even though I am.
At least 3 times a day in my head I repeat the words "It's not good news." The words said to me when encountering my second miscarriage. I could see the scan, I could see what was never going to be. I was sent to the little room to cry. I grabbed my things, and we went home.
At least 3 times a day I think; "how old would he/she be now?", "I wonder what it would be like?". Back then so many people said to me; "you can have another", "it wasn't meant to be"; all kinds of well-intended absolute **** that you just don't need to hear.
I wanted THAT one. It WAS meant to be.
You hurl yourself onto your bed in a crying heap and weep loudly into a pillow wishing this would all go away and that actually this is all just some horrible dream that you will wake from.
So those of you who follow my story will be aware that the birth of my daughter Amy-Rose was a very unexpectedly traumatic one. Her heart rate slowed in labour and she was delivered via an emergency c-section.
She was resuscitated, ventilated, sent for cooling therapy due to a severe brain injury she had sustained whilst starved of oxygen. In many ways I see this as a baby loss.
Obviously, she survived, and I am eternally grateful for this. But we almost lost her... a few times... and I do sometimes mourn the child that could have been had it not been for her brain injury.
It's funny how as soon as you have a baby people feel it's okay to ask "when are you going to have another?"... as if somehow your work is not yet complete. As if birthing a child... creating a human life... is a doddle can be compared to deciding to buy a coffee. It's not a snap decision, it's not an easy conversation for everyone.
So, we did decide to have another. Terrified as we were having encountered what we had... we wanted her to have a sibling... I (selfishly?) wanted a child that could say mummy, or eat... stuff I didn't get to do the first time round. 3 days before my 12 weeks scan I bled... and I mean bled.
I was told I had miscarried, was informed I had endometriosis and indeed a blood disorder I didn't know I had, and was eventually sent on my way.
When I got home I never wanted to leave my room. I wanted the grief to consume me and eat away at me until I vanished into thin air. It's hard to put into words how I felt. Why me? What did I do wrong? It wasn't and isn't fair.
I bled in total for 16 weeks, becoming very anaemic and unwell.
In the end I had to have a myectomy (removal of fibroids and webbing... I have a lot of internal scarring). It was agonising. I had a local anaesthetic and gas and air... but it didn't touch the sides. When it was over it almost felt like I had closed the book on that pregnancy.
It was like it had never happened. It's like I had never seen those two lines. And yet in my heart and mind it will be imprinted forever.
A few years on and I am rendered traumatised and terrified by the whole thing. My heart sinks and my gut twists when I see a pregnant belly, or a baby. I think why couldn't that be me. I know that if this ever was me... how would I ever be even half as calm as all of these women?
My perspective of the world has shifted irreversibly. I have antidepressants, I have grief counselling. I struggle more than ever with social anxiety, and my tether to reality seems to have been snapped. Sometimes in a cafe I will see a mum group all nursing their babies and laughing cheerily. That's not me.
I feel a bit like an alien observing a foreign species.
Since opening up about my story a lot of people have contacted me. It's surprising just how many people have been through this (well, 1 in 4 in fact). Some don't talk about it... and some do. We all cope in our own ways. I am both heartened and heartbroken to hear some stories of my peers and I am in awe of their resilience and determination to plod on in life and make the most of it.
I am a wallower. I am guilty of wallowing. I think it's okay to not be okay.
But I wish that more often than not I could just get knocked down, get back up, dust my knees, and continue. It isn't always that easy.
Loss is sitting on your daughter's bed and crying whilst holding her NICU cpap hat. Loss is avoiding the baby clothes section in the shop. Loss is clicking "unfollow" on a pregnancy announcement because you can't handle it... but then feeling like a guilty and horrible monster for needing to do so.
It's trying to distract yourself by any means possible and trying to repurpose your life. It's realising that actually in spite of your loss... you also have so much, and feeling terrified that you could lose again and expending every ounce of energy on worrying about what could happen.
It's being lay awake numb with insomnia even though your body aches and your eyes are tired. It's PTSD, night terrors, overthinking. It's a rapid heartbeat and a tight chest. It's so many things. It's feeling you're not like everyone else and that you don't work properly... you're broken.
But it's also learning to love fiercely and appreciate what you've got. It's also recognising the pain in others and developing a level of empathy that you can only feel with experience. It's having learned hard life lessons and being dealt bad cards but still making your bed every day.
It's smiling through the pain and that remembering how lucky you are.
It's being thankful every moment and internalising the grief so that you can try to put it to one side and enjoy the little things in life. It's knowing how all of this feels and having a deep hunger to help others in their time of need and not wanting them to feel how you feel. It can shape you and make you a better person.
I appreciate that this is a difficult issue to digest, and can often make people feel uncomfortable. But I write this in full openness, with tears streaming down my face, hoping hard that someone will read this who needs to read this and finds the inner strength to overcome their shortcomings.
I will never forget my two pregnancies that had a bad end. I may not have been long into either pregnancy but this is arbitrary... LOSS IS LOSS.
You can never undermine someone's loss; your loss is no bigger or no less. It is what it is to you.
There will always be someone out there who "has it worse" than you, or people telling you "it could have been worse"... but don't listen. Your feelings are valid and you should be listened to without judgement and with love. I remember reading a post online called "even the horses are pregnant" and it perfectly articulated all of my feelings...
Sometimes the best thing about an awareness week is seeing how you feel written in a way you couldn't articulate yourself and saying to yourself "hey, that's me! I'm not alone in this".... and it's true... you are not alone in this, and I thank that person who wrote that post for getting me through some darker times.
To anyone affected by my post I really do encourage you to seek help via your GP.
Struggling alone is the worst. I am very lucky to have the support network that I have and in spite of the challenges I still face daily... I persevere and I do have hope.