David's Site

Before we write anything else, Annie and I need to say sorry to everyone reading this. For most of you, including non-immediate family members (and in at least two cases, members of the wedding party) this is the first time you’ll be hearing about any of this. We both know that when it comes to saying thank you for wedding presents, sending out photos, and even just thanking people for coming, it’s probably too little, too late, but we hope that an explanation of why we’ve basically vanished from the face of the earth can be the first step to reconnecting with all of you.

Because I have a more personal experience of the first part of the story, David’s asked me to write this explanation. As you will know, I was 18 weeks pregnant at our wedding and having a pretty rough time with the pregnancy, including throughout our otherwise pretty great honeymoon in Japan. We haven’t even looked at the honeymoon photos to delete the blurry ones, but we’re happy to share any if people want to know what we got up to. Annie went on a waterslide!

When we got back from the honeymoon we discovered that our baby – a girl, which David let slip the night of the wedding after I told him not to tell me… the only time he could have got away with it! – was smaller than she should be. We spent the next two weeks in and out of hospital with me having very high blood pressure and getting scanned a lot. At the 26 week point the goal wasn’t to try and get to term, it was just to delay having a caesarean as long as possible, ideally until 28 weeks.

Sophie (named after Zofja, my grandmother, who has since passed away) was seriously unwell. She was intubated because she couldn’t breathe on her own, and half her blood had been transfused just within the first 24 hours. Then she developed sepsis, became ventilator dependent and developed cysts in her brain. At the three-month mark, when Sophie’s due date was coming up – and when we’d always expected to be the ‘worst case’ delay to taking Sophie home – we were told that Sophie’s lungs were much worse than expected and we wouldn’t be going home any time soon.

And for those noticing the dates, this is when Covid became a thing. First it was only one parent allowed at a time. Then the hospital accommodation, which we had moved into, was shut. When Sophie was moved to a paediatric respiratory ward (away from the Neonatal unit) then the guidance became that only one parent at all was allowed to visit, so I didn’t get to see my own baby for months and months, and Annie had to move into the hospital ward where she slept on a plastic armchair for months.

After eight months, Sophie finally came home. David was a bit teary when he collected us with a Zipcar. Actually, I bawled like a baby. I’m proud of being in touch with my feelings! And you cry at movies.

Sophie was one of the shielded throughout the pandemic. At home, she had oxygen support during the day and CPAP at night, which bit by bit chained until the present day (November 2023) when now she just gets half of her daily calories through a tube, every night. She did, however, gain some diagnoses. She has Cerebral Palsy, Epilepsy, uses a mix of special chairs and a wheelchair, and the list goes on from there. Fortunately she tends to be as far ahead on her cognitive and verbal milestones as she is behind on her social, fine motor-control and gross motor-control milestones. And she starter at Nursery a few months ago, so she’s been making friends with an ease that David and I find amazing, since neither of us find that easy. On the other hand, a combination of social isolation and having to protect Sophie and my lungs means that she’s not managed to do a full week at school and the three of us are pretty much constantly in and out of bed with fevers and breathing problems, while Sophie goes through an essential period of immune system development.

We’re told that at some point Sophie will walk, but we don’t know when. She’s getting close and can use parallel bars with some help, but she’ll always need to wear some sort of support on her left leg.

I’m going to stop here and leave it to David to write most of what’s left. We have all carried the consequences of her start in life. David and I were both diagnosed with complex Post Traumatic Stress Disorder and I’ve not yet been able to go back to work. Things were starting to get easier until the constant sickness that came along with Sophie starting nursery, but Sophie is a remarkable, kind and resilient child and we love her very much.

I’m going to jump back a bit now to before Sophie came home from the hospital. In one of the worst cases of tempting fate imaginable, I went back to work in 2020 having said “if I can handle everything we’ve been going through, I can handle going back to work after four and a half years of sick leave”.  It turned out I was totally wrong on that, so I ended up going on indefinite sick leave a year later. Part of that was because of the PTSD, part was because of the inevitable but very unpredictable progression of Ehlers-Danlos Syndrome, and part was because of my spine. You see, a few days before Sophie was born I injured myself on the side of a bathtub in the bathroom of the hospital room Annie was in, and I’ve been having increasingly serious treatments for spine damage since then.  

So, I went back onto long term sick leave about a year after I went back and for various reasons it was a year and a half before I received any income under my insurance. In one way it was nice to receive 18 months of money all at once, and most of it is now safely stored away for as soon as our flat actually sells and we can move to a two bed place, but it did mean that we were in a really precarious financial situation for a long time. Anyone who has been in a similar situation will know that withdrawing into oneself is a common reaction to this, which is what we did.  

So, hospital was home for two or three of us from December 2019 to August 2020, then we had shielding, my spine, Annie and my diagnoses and slow recovery from PTSD, a money crisis, and more. At some point, I became so ashamed of not having thanked anyone for their wedding presents, or for turning up, that ‘contact wedding guests’ became a permanent fixture on my to-do list. And part of the irony is that I uploaded our wedding photos to my website within a few months of the wedding… all I needed to do was send an email, but even needing to do that became too enormous a weight to bear with everything else that was going on.

So, again, Annie and I are really sorry for not being in touch. We’re sorry we didn’t thank you for your wedding presents, we’re sorry we didn’t send out the photos, and we’re sorry that we’ve drifted away from all our interactions with the rest of the world. But we wouldn’t have written this if we didn’t want to reconnect, so please, email us, WhatsApp us, even call us to chat. We don’t want to lose the relationships we have with family and friends. And for those of you in the wedding party in particular, we are so, so, so very sorry for not showing the gratitude you deserve for everything you did to give us such a special day. Memories of our wedding day kept us going through a lot of the darkest periods in the years to follow, and that wouldn’t have been possible without you. And in my case, I want to particularly apologise to James and Alex. You were the greatest best men I could ask for and I haven’t thanked you for four years. Whether you are willing to speak to me again or not, I really hope you will forgive me.