MJB's legacy

Of all my pieces of writing so far, this has been the hardest. The vastly contradictory emotions scramble my thinking and send me down paths of thought that it’s difficult to return from. There’s also a sense of pressure to do MJB and his incredible little life justice.

Focusing on the following things I’m attempting to write about makes it hard not to feel a huge sense of pride. But as soon as that pride threatens to cross the line in my mind between being about him, to wanting to be about myself as his mum, that pride turns to burning shame. Being personally congratulated or praised for things about MJB’s legacy, mainly by loving friends and family who are desperately trying to offer up reasons not to give in to the temptation of hopelessness, has at times felt as uncomfortable as a slap in the face.

I need to make it clear: As proud as I am of what MJB achieved in his devastatingly short life and sudden unexplained death, if offered to swap it all back for the chance to be his mum here on earth for the rest of my life, it wouldn’t take a heartbeat. That’s about as long as it takes for the comfort of these things to turn back into jealousy and grief in me too.

These things should be spoken about though. If nothing else, recognition of the good in the world needs to happen if we want to survive the constant screaming awareness of what is wrong with it. I struggle to watch the news these days for fear of hearing more senseless suffering and bereavement being reaped at endemic levels. My faith has been tested to its limits in the face of my own pain, but I haven’t been able to abandon the innate sense of trust in a greater force for good. I can think of no cause more worthy to live for than the one my faith has taught me - and that alone has been enough for me to hang on to, along with the hope of redemption and, eventually, being reunited with MJB. (I’ve written more on this hope in I can only imagine)

So here are just some of the reasons MJB’s life and legacy can still be celebrated, asides from the obvious joy and memories he gave us by just being our beautiful son, despite the pain of our loss:

The love, prayer and compassion that his week in intensive care provoked was nothing short of divine. Within hours of MJB becoming so unwell a global network of prayer had begun along with endless streams of well-wishes and offers of ‘anything I can do’s. The Friday morning that our closest friends and family joined us, to love MJB and just be present with him, was as close to an insight of heaven as I feel I could ever see. Sometimes I felt literally physically lifted by all the prayer and kind thoughts I knew were happening for us, when even just standing was too hard a task to face by my own strength. That care and concern still continues, even two months later as I write this - perhaps with less urgency, but no less impact.

The staff at the Royal London pediatrics intensive care unit were amazing. Being a nurse at an NHS hospital myself, they made me proud to be associated with the same vocation. They were always professional, but occasionally also vulnerable enough to shed a tear with us and tell us directly what a wonderful little boy our son was. They must care for hundreds of poorly children each year, but they made no secret of the fact that MJB had left a unique impact on the team there. Partly due to the following point:

MJB’s body recovered miraculously with the medical support he received that week. So much so that it was only the initial brain damage he sustained which meant he could no longer live without the aid of ventilation. His dad and I, as health professionals ourselves, had already previously discussed that we would both want to be organ donors should the decision ever have to be made on our behalf. So it was easier than we expected, though still as horrific as you might think, when the option to choose the same for MJB became a reality. It was a long-winded process which added even more agonising hours of waiting to our hell. But we knew that if our situation could have been prevented by another family’s inevitable loss, we would have given anything for that to happen.

We didn’t know at the time what use they would find for his organs, and I was adamant I didn’t want to know - I couldn’t think of a single person worthy of losing my son for. But a few days ago we received a letter explaining that 7 people had received life-saving transplants from MJB’s tiny body - an adult man received his kidneys and 6 others benefitted from the precious hepatic cells from his liver. Not to mention other samples which will contribute to other potentially life-saving studies. Like I said before, the comfort of this knowledge does little ultimately to quell the constant longing to have MJB back, but it’s hard to argue that for one tiny life to save 7 others is an amazing and beautiful thing.

If you haven’t yet thought about it or decided, but are inspired by learning this about MJB’s legacy, please be proactive in extending its reaches by signing up to the donor register. It’s quick and simple: www.organdonation.nhs.uk/register-to-donate/register-your-details/

Once MJB no longer had use of his beautiful body and the time came to lay him to rest, we were motivated to plan a day that would do him justice despite how painful it was to face the reality of it. My husband summed it up well when he explained how hard it was for him to hear me describe options as ‘lovely’ or ‘nice’ - insisting that the best anything in that situation could be was just ‘fitting’. There is nothing ‘lovely’ about planning and attending your first born, 3 month old son’s funeral. On the day, however, we encountered a deep and poignant beauty in the traditions, rituals and processes that we never expected. His committal at the crematorium was attended by only our closest friends and family. The image of my husband carrying in MJB’s little neat white casket and placing it on the platform surrounded by curtains will stay with me all my life. It was horrendous and powerful - a pure display of selflessness and strength. The music, readings and word (given by my Dad, MJB’s doting grandad, who happens to also be our pastor) washed over us like some distant dream, but all of it felt ‘fitting’ in the best way we could have hoped for.

It was the evening’s thanksgiving service, though, which made MJB’s legacy and impact undeniable in its reach. Over 300 people gathered in the very same community hall that we had previously celebrated our wedding reception and dedication of our sons in. Being the week before Christmas, we were stunned by the turn out at such a busy time of year and with such short notice. People who had never even met MJB, but were part of that same overwhelming network of prayer and compassion, attended and helped us cry out to God in our pain, but also in our faith. We sang and worshipped and prayed with exhausted and broken abandon that night. Memories of the sound of the singing that filled the hall, and the vision of the thousands of fairy lights and photos which lined the walls, still makes me catch my breath now. Afterwards, in true east London community church style, a huge feast of delicious food was provided by family friends and the combination of that with the music, smiles, hugs, tears and kind words made for the most beautifully fitting tribute to our son. We have been told since then that for more than a few of the people who attended, that night marked a pinnacle moment in their own faith journeys too.

Because we opted not to bury MJB’s body, we decided to ask people to leave the buying of flower tributes just to those in the family who wanted to. The arrangements we did receive were small and tasteful so could be donated to members of the local elders project who we felt might appreciate them afterwards. As an alternative for people who wanted to contribute something to MJB’s funeral, we asked that the money instead be donated to the charitable efforts in Aleppo, Syria - a place that has given us great perspective in terms of our own grief and huge appreciation for all that we have still to be grateful for. We don’t know the exact figure, but we’re aware of hundreds of pounds donated in MJB’s name to these various charities that are either directly involved there or help to provide for the refugees from there and similar other warzones:

International Rescue Committee - www.rescue.org/how-to-help

Medicins Sans Frotieres - www.msf.org.uk

Tearfund - http://www.tearfund.org/

Oasis UK - http://www.oasisuk.org/

I’ll conclude by simply saying, that as well as all this, MJB’s legacy will also go on to include any good and joyful thing I am blessed with the ability and opportunity to do for the rest of my life as he lives on in my heart. I don’t want to speak on anyone else’s behalf, but I think it’s safe to say the same goes for my husband too. And I’ll do all I can, as a mum to JD, to demonstrate to and inspire him to feel the same way about his own beautiful life which is already nurturing a joyful legacy of its own.