Prematurity is… Something which will affect us, always. So, what do you do?

Saturday was World Prematurity Day and the hashtag was trending. Seeing my social media timelines filled with images that reflected our experience of having a baby, as opposed to what is the more mainstream experience, made me feel part of a very special group of families when I often feel isolated.

It was a year since I wrote my first blog on Leo’s early arrival and I reflected how so much has changed since then. Last year, I didn’t share the whole story. We were still relieved to be at home and seeing our baby thrive. We were enjoying normal baby things. We had our First Christmas coming up. I hadn’t fully allowed myself to feel the anger and grief that was circling around my head and I was still very much in the ‘taking it a day at a time’ headspace thinking that eventually, our life would plateau out.

Earlier this year I shared the information I had left out in this initial blog; our baby had suffered a brain haemorrhage and his development may be affected. On World Prematurity Day last year, I was putting my fingers in my ears saying ‘la, la, la’ and still hoping for the unlikely outcome that Leo would not be impacted by the damage caused. In fact, ‘hope’ was the theme of the blog.

Over the last few months, I have accepted that Leo’s premature birth and subsequent brain haemorrhage (I can’t yet type the word, ’damage’ after the word, ‘brain’ and not cry), is not something that will be solved by time. This is it, now. I have to decide. Do I live constantly with anxiety over Leo’s health (which is usually pretty good) and fear about his outcomes? Or, do I accept what is and what will be?

The answer is… I do both. Leo is doing very well. His paediatrician is pleased with his progress at nursery. We work very hard with the nursery to make sure Leo gets all the support he needs. I need the question in my mind, ‘what will be possible?’ and the consideration I give it drives me to make sure I do Leo’s physio when he doesn’t want to, encourage him, praise him and work hard for them. My anxiousness powers my determination. Leo needs our help to reach his potential.

Learning to accept Leo’s path is easier because of my faith in him. Leo is an amazing child. He is magical. He is joyful. He is brave. He is communicating. He is sitting. He has a secure attachment with his parents. I am learning to trust him to do the thing he wants to do in his own time. In the same way, I am learning to trust myself to listen to my maternal instincts. I realised last month when Leo had a bug, that I can’t jump into 5th gear every time that Leo has a bad physio session, a cough or bursts into tears. I will exhaust myself. I need to trust myself that I will know when something is not right and not react to every small note from nursery, every text from a grandparent or every time he calls out at night. I need to use what I learned about self-care while in the neonatal unit and apply it to the long-term.

We had a couple of hospital visits recently and I had the chance to observe some mothers of sick kids – some had children who had long-term illnesses or disabilities and others were experiencing the children’s ward for the first time. I witnessed a mum faint from exhaustion – lack of sleep and food or drink. I saw one mum have a panic attack. I met one mum who knew the ropes and knew what to bring so she could eat and sleep. I know mums that practically live on the Children’s Wards. These women’s own health was suffering too. Hospital life can mean a bad diet, little sleep, stressful environment, little natural light, lack of privacy, no fresh air and no opportunity to exercise. I am fortunate not to have had to spend much time there. As wonderful as the care for children is, it’s a difficult place to be a mother.

I have been fortunate enough to meet many women in the last eighteen months who have had similar, and even more challenging, experiences. My own mum is much further ahead along the road too. Having a baby with an illness or disability requires determination, resilience, acceptance and honesty. Be honest with yourself, your partner, your child and the rest of the world. Sharing my family’s story helps me and it helps others too. I want it to be OK to admit when I am struggling, angry or upset. Not as a betrayal to Leo, but as a validation to myself that what I am doing is hard and no one else knows what it feels like, but for me. This is it now, and I have to find a balance between doing the best for Leo and looking after me, which is usually the same thing.

So, here’s a thing that bothered me this week. I remembered a conversation I had with Ross last year about our Christmas tree. We joked about how it might be our last year of having a tree at ground level as Leo would be tearing into it by that time next year. Well, it’s next year and Leo isn’t moving around the room yet. That made me upset. It was a tiny thing, but it’s ok to be upset by small things. But here’s the positive. I used the word, yet. Leo is on his own timeline and with the right mindset, we can achieve many things that even medicine can’t explain

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