From The Heart: Jack and his amazing Mummy

I felt I had to include a little introduction to this particular From The Heart post. When I set out to create a space for our amazing community of readers to share and open up on a more personal level, I didn’t quite anticipate the swell of interest from such incredible, strong, courageous and brave women.  I felt deeply humbled reading through this piece for the first time – it promoted one of those genuine intakes of breath, a pinch-me-moment – stark realisation of how damn lucky I am to have escaped any of what this family has been through.

More than anything else, I felt inspired, deeply inspired by the strong sense of triumph over trauma – and how it does us all well to remember that none of us have absolutely any idea what others might be going through, and the importance, in light of this, of simply being kind in your day-to-day exchanges with friends and colleagues. So many of us hide our personal struggles from the world fearing that others will judge us for not coping or being weak. I hope this feature might encourage some of you struggling with reaching out to someone to make that call, send that email, strike up that conversation today, or sometime very soon. This feature is also a beautiful reminder to me that, as one previous ‘from the heart’ writer said, ‘Life does not put things in front of you that you are unable to handle.’

Over to you Julia… 

I am not sure why it has taken me so long to put this down, I’ve run over it in my head so many times. I am a photographer, of the wedding variety, and have been for over twelve years. During this time, I have made some amazing friendships, and feel honoured to count Annabel amongst – I’m proud that she has featured some of my weddings (when I get around to sending them to her, that is).  As a whole, this industry is full of kind and amazing people, including lots of other photographers. It might seem a little odd from the bride’s perspective, but many wedding photographers become friends and we all look out for each other rather than regarding each other as competition.

And that makes it even odder that I kept silent about my son last year. I mean I’m surrounded by amazing, supportive, inspiring people, but I was scared of what their reaction would be – be that sympathy or them simply presuming that I couldn’t do my job any more – or that I might have so much stress going on that I might ‘drop the ball’ whilst working.

You see, when my son Jack was born he was exceptionally poorly. I had a normal pregnancy, just like I’d had with his older sister Mia. I’d just assumed, thinking I was wonder woman, that I could have a short amount of time off and then carry on as normal. Plan sorted.

Mia and Jack

The first surprise came just moments after his birth – as we’d been told at the scan that ‘he’ was actually going to be a ‘she’. My beautiful new baby boy was presented to me after a natural delivery and we soon got to take him home.  But something seemed wrong to me. I didn’t know what – and I couldn’t quite say why, but for those first few hours at home, he simply wouldn’t sleep or eat and whilst he wasn’t crying he was clearly uncomfortable.

As well as being a wedding photographer I do newborn and baby photography in the studio – I’ve been around enough babies to know my newborn’s behaviour felt strange, and my motherly instinct was ringing alarm bells inside. The next morning, I suggested to my husband that we ought call the hospital. I felt like I was being a completely paranoid mother. Thankfully though, my husband went along with the madness – and we headed back to the place of Jack’s birth.

It was just as well we did, as reacting so quickly may well have saved his life.Within 10 minutes of arriving back at the hospital, Jack had started vomiting violently – this was despite nothing having passed his lips since his birth. I will spare you what happened in technicolor detail, but we were rushed to resuscitation, and in the chaos and surrealness that ensued, we began to wonder if we’d get to take Jack home at all. When he was eventually stabilised we were blue-light ambulance driven to specialist hospital Royal London, where after more tests and scans in the middle of the night, his amazing consultant stayed to operate on Jack.

Jack spent the next few weeks in the Neonatal Intensive Care Unit at the Royal London, and during this time, we discovered he had cystic fibrosis. I cried for a bit, and then in the haze and confusion, I decided I couldn’t – wouldn’t tell anyone about it, other than very close family and friends. I was too scared that my colleagues and potential clients would judge me – think me incapable of being able to work. And I was frightened of this. In that moment, I decided to put on my hard, outer shell and prove to myself, ‘I can do this’. And, I did.

But it wasn’t to be the end of Jack’s hospital journey. At his first clinic appointment, when he was just 4 weeks old, an eagle eyed Doctor spotted something odd – she reassured us, saying it was probably nothing, but she’d like to run some tests anyway. So I put my positive hat on and told myself that he couldn’t possibly have two bad conditions. Everything would be fine.

But fast forward a few more weeks, and there were more biopsies and eventually, another major operation – this time reconstructing Jack’s liver due to bilary atresia (children’s liver disease). After that, yet another nasty genetic condition was diagnosed – Alpha 1.  Jack has three major, life changing conditions. Turns out he is pretty unique in this respect and continues to baffle the doctors.

A matter of days after coming out from his second operation, I was actually photographing a dear friend’s wedding. The thought of working and having some time to myself kept me going, but again, I was worried they would worry (all the worry!), so we chose not to tell them how ill Jack was until after the wedding.

The day of that wedding was amazing – I got to watch and capture two people I love get married. And after months of being at Jack’s bedside, learning about medicines and treatments, I felt, for those precious few hours, like myself again.

As a photographer, it never feels like a’ job’, to be capturing images of people in love on such a special day in their lives.  It’s a passion, something that you literally pour your heart and soul into. Without it, I don’t feel like ‘me’. Kara and Gareth’s wedding was my little sanctuary amongst chaos, and it was the experience of being their wedding photographer that made me realise that I really could carry on, because work was never ever a chore. It’s like being asked to eat chocolate to make you feel better – it’s something I adore. But of course, when you’re a working mum, guilt plays a constant role in your life.

I’m so glad I had that small, precious opportunity of me time, because days after the wedding, Jack had to be rushed into hospital yet again – this time he was diagnosed with the deadly sepsis (some of you may recall the beautiful wedding of actress and jewellery designer Clara Francis and BAFTA winning actor Jason Watkins on Love My Dress – it’s beyond heartbreaking to know they lost their beautiful two year old daughter Maude to sepsis).

The same eagle eyed consultant who had noticed Jack’s liver issues, was due on maternity leave the next day. She was unbelievably busy, but despite this, she’d rushed down to A&E to see us and diagnosed the sepsis immediately. Not for the first time, her fast reactions saved our son’s life.

That episode also marked the immediate end of my maternity leave. It felt like I had blinked, and it had gone. But despite everything we had been through, I still wasn’t ready to share and talk about our experience fully with others. I believed people would think I’d be incapable of coping and hesitate to book me for work. But I did continue to work, and I loved being able to photographer and share those amazing days with the couples – couples who had no worries and no clue just how unwell my son was, how much we’d, I’d been through and was still going through. I’d posted an update to my Facebook page that Jack had been poorly at birth, but I was so vague with the details, that everyone presumed that what had happened, he’d fully recovered from and that was that.

Jack now has a medical routine daily including 15 separate doses of medicines a day, and 2-3 daily sessions of physiotherapy. Friends will often ask ‘how do you do all that?’, but actually, when it becomes a routine, it’s as easy as brushing your teeth. You just get on with it. The hard parts are those any parent of an 18 month old would have to face (and in some odd, dark way, maybe it’s easier for us than it is them –  Jack sadly cant walk yet due to the damage from his ops). But on the day of a wedding, its daddy duty and I wave my husband and children off happily and get to throw myself into doing something I love and adore.

I know all my couples will tell you that I have never dropped the ball, that I have never needed to cancel a job, and that nothing has ever been delayed. But as the mum of a child who is officially registered disabled, I do feel that I have to justify my capabilities – that I constantly have to reassure people that I’m fine! I can cope! And I do.

I hope I never offended anyone not telling them just how ill Jack was – I never meant to, I just hate burdening people. I have no idea what the future holds for our family, lets be fair, no-one does. All I know is that I have two happy children and a husband and job that I love.  I consider myself a pretty lucky lady.

On a final note – if anyone has anything bad to say about the NHS please send them to me! Jack’s medical team are simply amazing. They have literally saved my little boy’s life more than once. Weirdly, they have become like an almost extended version of our family. One that I love very dearly indeed.

I hope my story has offered some words of encouragement to other mum’s who might be struggling with poorly babies or ‘mum guilt’ or to anyone struggling with their own personal challenges right now, whatever they are. I’d love to hear from you – please reply anonymously if you prefer.

Love Julia x

 

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Julia is a professional wedding photographer at ‘Julia & You’ – she also shoots newborns and babies through Julia & Mia.  Julia has contributed to our ‘From The Heart’ feature – a new weekly Sunday spot on the blog where we hand the blog back over to our readers to write about all matters of love and life. If you would like to contribute a From The Heart piece, we would dearly love to hear from you. It doesn’t matter what it’s about and it doesn’t have to be related to weddings at all – we’re looking for honest, authentic, personal, sad, happy, family, relationship, marriage, health, light-hearted, serious, baby, trying for baby, children, career, simple, complicated – real life issues.  We just need you to write from your heart. Keep it upbeat and witty, or share your thoughts anonymously on a more challenging or emotional subject. Please drop me a line at [email protected]. Love Annabel x