Good old Facebook memories: it presents a mixed bag at the moment. Facebook memories provide a “on this day” reminder.
There are daily reminders of what Martin, Hugo, and I were doing on this day three years ago. Bittersweet memories: memories of when we still held hope that Hugo might be able to come home with us. Martin and I would post every day, providing an update about our son’s progress and my own to our family and friends across the world.
That was not to be. The photos and videos we took of Hugo during the 35 days of his life are all we have, and all we shall ever have. Every one is precious.
Seeing the videos and photos pop up in my memories make me smile: my beautiful strong boy with all his feisty fierceness, showing how he earned from his nurses the nickname ‘Hugo Boss’.
Sharing the video and photo memories helps raise awareness, too: there are many friends I have made since Hugo. These friends have read my posts, have heard me talk about Hugo, and have seen photos but videos are something I share less frequently.
Seeing these videos on Facebook, along with the heartfelt emotion connected to the progress update of the particular day helps share knowledge about very premature babies and the parents who hold constant vigil. Those babies’ strength, as well as the constant ups and downs of the rollercoaster journey that is the neonatal intensive care unit.
Today, this popped up in my Facebook memories: my dear friend Michaela had included our story in the booklet for NHS Change Day.
When the booklet arrived, I was still (still! nearly two weeks after my initial admission) an inpatient in St George’s postnatal ward. There are massive gaps in my memories of that time, but I do remember receiving the booklet, and posting on Facebook about how proud I was that Hugo had been included. He was 16 weeks premature, weighed less than a tin of baked beans but look, he was famous already!
This morning, seeing a friend’s comment on the post three years ago made me pause:
Famous! Already! Destined for greatness, obviously.
Prescient, but in a way no one wanted.
Hugo was destined for greatness. He is, through his legacy, helping transform the care and experience of other families like mine, through knowledge and education, and through fundraising.
That I would much rather Hugo be with me, being an adorable tyrannical cheeky loveable threenager goes without saying.
But he is not.
I have survived the past three years, somehow. Not only have I survived, but I have thrived. I am raising awareness of HELLP syndrome, premature babies, and helping improve care for fellow bereaved parents.
I am even now working with the NHS Horizons team, which is where NHS Change Day originated. It is a job I love in a team full of fabulous people.
That is not to say life is easy: it is not, far from it. Living with grief, as well as post-traumatic stress disorder and all the fun and games that come with that is really bloody tough.
I am writing this for other mummies and daddies in a similar position. The death of your precious baby is, quite literally, the worst thing that can ever happen to you. You think the grief will kill you. Sometimes, you hope that it will kill you. You can see no light at the end of the tunnel. But that tunnel has lots of twists and turns…keep going, the light will flicker and glimmer and tease you and disappear but it is there.
Life will never be the same again.
But it is possible to live.
I am writing this for myself, too. I need to remember to be self-compassionate. That it is acceptable for me to have down days, to not have it all together. To reflect that what I have achieved in the past three years is extraordinary.
To understand that three years later, three years is no time at all.