A brief from a brief life

My son Hugo had a life that was tragically brief: 35 days. Each of those 35 days is so very precious.

All mothers, of course, think their babies are special. And, of course, all babies are incredibly special.

Hugo was particularly special for his mischievousness even while ventilated and in an incubator; for his fighting spirit, his determination to live and for the way he inspired so many people with these qualities both during his life and after his death.

After Hugo died, I gave myself a brief to make sure he would live on through his legacy.

Blogging became an outlet for me in expressing my grief. I wanted people to know about the signs and symptoms of HELLP syndrome and preeclampsia, the pregnancy illnesses that caused Hugo’s premature birth. I thought if my blog could save the life of one mother or one baby in Hugo’s name, Hugo will have done something very special indeed.

Hugo was mischievous – he’d wriggled out of his arm guard and chucked it off.

I’ve worked in NHS communications for several years, and many of my experiences as a patient were fascinating. There were so many communications issues with simple solutions that were so obvious to me, so I have set up Bright in Mind and Spirit in Hugo’s memory. It’s what Hugo’s name means.

The blogging and this organisation have given me a sense of purpose and a sense of pride. It is a way of making a positive out of a terrible tragedy. It is a way of finding a sense of meaning out of something that there is no answer to the question “why?”

While I have given myself this brief, I have no particular plan or strategy. It’s completely contrary to how I would usually work – campaigns are usually planned to within an inch of their lives with a detailed strategy.

This lack of a plan does not mean that Hugo’s Legacy is any less important to me – if anything, it is the most important thing I have ever worked on, and there is nothing in the world I am more passionate about.

Me and Hugo, on the day he died

The lack of a plan or strategy stems from my emotional fragility – I am taking things step-by-step, and day-by-day, and taking advantage of opportunities as they arise.

It is possibly also representative of the fact that this year’s events have shown me that all the planning in the world cannot stop things happening if they are going to happen.

This quote that I saw the other day really resonated with me:

Flow with whatever may happen and let your mind be free.

Chuang Tzu

I realised this is what I have been doing, without articulating it. I’ve been using blogging as a therapy, and writing whatever I have felt like writing. On my worst days, it has helped me express and work out my feelings and what specifically is making me sad on that day – there are many different triggers.

I have been overwhelmed at the response to my blogs – from fellow bloggers, from people on social media, and from national charities.

Hugo’s Legacy is already helping people, in so many ways. These ways include talking about baby loss, sharing photos of our babies in the stars, and an insight in to the world of the bereaved mother. Fortunately, many will only get this glimpse and never have to experience baby loss first-hand.

It is useful for me, in this week that marks six months since Hugo’s birth, to reflect on what Hugo’s Legacy has achieved during these short months.

Hugo’s life was sadly far too brief. But it makes me so proud to know that he will live on, helping so many people through his legacy. This brief gives me a bit of comfort amidst my sorrow.