December 2017. T was 9 months old. I was really looking forward to celebrating our first Christmas with him. Just a week before the big day, T started crawling. It was such a sight. I was just over the moon to have been able to witness him do it for the first time. I felt very strongly about being there to see him hit his milestones as I felt like I had missed out on a lot during the second half of my pregnancy and in those first few weeks of his life.

Christmas did not let us down – it was such a magical time. We were just so grateful to have him there with us, even though we knew he was clueless about what was going on! It was so lovely to be able to share such a special time with our families – because let’s not forget, T was the first grandchild on both side of the family. None of the grandparents, aunties or uncles got to hold him and meet him properly for weeks. As tough as it was on my husband and I, there were others that our NICU stay affected as well. 

After Christmas, I started to carefully plan T’s first birthday. I was absolutely determined for us to have a positive day on his birthday, seeing as I felt like his birthday was memorable for all the wrong reasons. I had planned a party, carefully selecting decorations and gifts – I wanted the whole celebration to be nothing less than perfect.

But it all just fell apart. The Beast from the East arrived and dumped so much snow on us, that we had to cancel the party, and our families were all snowed in and unable to visit. I was absolutely devastated. Another thing to go wrong on this particular day. It was all completely out of my control, just like the aftermath of T’s birth, but I couldn’t help but feel the way that I did.

I cried about it, a lot. I felt angry that another milestone had been taken away from us. I know that may seem ridiculous and irrational to some people, but I couldn’t help how I felt about it. Luckily, we managed to rearrange the party for two weeks later, and we did have a lovely time. It was definitely what I needed, because let’s face it, T wouldn’t remember his first birthday. The party, the decorations, the gifts, it all needed to be perfect for my benefit, not his.

I spent the entire month of March 2018 reliving each day as it had happened the year before. I knew exactly where we were on that day, and what had happened. It wasn’t healthy for me to think that way. I can see that now. Each year, getting through the month of March has gotten easier. I still very much remember the date of his surgery, but other than that, it is getting trickier to remember each individual day of our NICU stay. It’s true what they say about time, it really is a great healer.

My second Mother’s Day was an emotional rollercoaster – I had already spent one with T. I remember waking up at home on my first Mother’s Day. T was in the NICU, and my husband surprised me with a card and a couple of gifts. I burst into tears, as this was something I had always looked forward to, and yet, I wasn’t waking up to my boy on such a special day. This made my second Mother’s Day even more precious to me. And actually, each Mother’s Day since then. Now I receive handmade cards from T – he’s yet to choose a gift for me himself as the kid cannot keep a surprise to himself, he gets so overexcited, he spills the beans within minutes! 

A month later, we had a small gathering with the grandparents to celebrate the anniversary of T coming home from hospital. For that year, I think that date was more important to us. That was a big milestone for us as parents. Whilst we had gone a whole month leaving him behind in hospital, he had been home with us for a whole year.

Some people may assume that this would be the point that I could finally move on from what happened. But instead, this was the point that I realised that I wasn’t ok. I hadn’t dealt with the feelings that accompany a stay in the NICU. It’s a big step to admit that you need help, and that you are not ok. It takes guts, and so for anyone who has struggled, and has sought help, good for you! I personally don’t think I would have gotten what I needed out of professional help until I was ready to ask for it.

We never had a professional check up on our mental wellbeing after we left the NICU. Yes, we had the health visitor round to check on T, but they didn’t really understand the experience that we had as it hadn’t been the norm, and so they didn’t ask too many questions about how we were doing as parents. I don’t assume that is part of their job, but I do feel like someone needs to check on NICU parents in a professional capacity.

You are just expected to get on with it, which may work for some people. But it wasn’t working for me. I felt that because my son was at home with me, what did I have to complain about? How could anything else possibly be wrong? He was home with us and that’s all I we wanted. We knew of families still in the NICU, some who had been there when we arrived, some who arrived after us and still had a long way to go. I felt it was best to just crack on and hope that over time, things would feel better. That I would feel better. Some days would be better than others, but thinking back now, I don’t feel like I was myself in that first year. 

What I want to say is this – It’s ok, not to be ok. Had I talked more about my feelings at the time, during that first year, would I have dealt with things better? Perhaps. But the important thing is, now I am ready to talk about it. Better late, than never in my book. One thing that has been clear, there should be more support for parents once you leave the NICU. It affected my mental health massively, and still does from time to time now.

I did go on to have some counselling back in 2019, but I was referred to a local baby loss charity, and I didn’t feel that they understood my feelings. And who can blame them? I hadn’t lost a child – I was definitely in the wrong place. I was referred by my GP and wellbeing service. I remember them being unsure about who I should be referred to – which to me screams a lack of support for the aftermath. I’m hoping this will change in the not-so-distant future, but for now, I will keep talking. I will do what I can to help raise awareness of the impact that being a NICU parent can have on your mental health. And maybe, just maybe, things might change.