07 January 2017

One Year


So you are one. One year old. I know I should have been more prepared for it, but it really doesn't seem possible.

Yes the dates add up, one year ago you decided to enter this world slightly early, but in your own perfect time. Your arrival was quick and it made me proud. I faced my anxieties, my fears and worries about what was to come after your birth and put them to the side after a little wobble. I embraced the fact that you were coming, not how we imagined it all those months ago when we first found out I was pregnant, when we first saw your little dancing form on the screen, before we knew all that we were to find out. But it didn't matter, you were coming and we were eager to meet you, our second baby, our second son. Unlike Theo we had pretty much decided upon your name before you arrived, a name I've loved for a long long time and it only seemed fitting that it would belong to you. Because you were loved, all the way through, and that love is what keep us going, ready to face whatever came next.


But I don't think anyone could have really prepared us though for what came next. It just doesn't even feel like it actually all happened to us. Of course we knew that when Rohan arrived he would be taken to NICU, then we thought he would spend a few days there getting ready for surgery. But that never happened. I'm thankful of course that we didn't have to send our newborn baby down for surgery, but the weeks spent not knowing what was happening, awaiting meetings, diagnosis and plans, were torturous.

I can remember in the hours after Rohan was born I was so full of adrenaline that I walked myself round to the ward, dropped my things and headed straight down to NICU. We didn't hold him, we hadn't since the moments he was placed in my arms after he was born, then taken away again.  Theo came to meet him and his face was so full of inquisitiveness and fear that I didn't quite know what to do. I felt love and sadness. I think I'd imagined in my head over and over the meeting of my two children, and it looked nothing like this. There were so many moments of realising I had to say goodbye to all these things I had imagined, and accept that they weren't to happen. I wouldn't have skin to skin, that first feed, gazing at my newborns face asleep in my arms, seeing my first born meet his brother and being able to reach out and touch him. There's just so much that I don't think I ever really faced. We just went into auto drive. Rob had to return home that first evening and I was encouraged to return to the ward to get some rest. They have a special room on the maternity ward, for mums who can't be with their babies. It just looks like any other hospital room, but lying there hearing the cries of newborn babies in the next room is just heartbreaking. I'm not even sure of what I felt on that first night, I don't think it had sunk in. It did and it didn't feel like something was missing. Of course I no longer had a huge pregnant stomach, but at the same time I don't remember feeling like I was separated from my baby. I think that perhaps because we hadn't spent time initially bonding that the bond wasn't as strong. That's hard to admit, but I know I didn't feel that same as I did with Theo. My mind rationalised it all, he was intensive care, away from me because that was where he needed to be. I couldn't do much for him.


I remember waking up in the night and trying to express for the first time. I then shuffled my way through the quiet corridors and down in the lift to NICU. Hours earlier we'd all been there, I held his tiny hand through the incubator and watched his tiny movements. I didn't even really think about not going down there, my feet just led the way. When I arrived I saw at once that he had something on his face to help him to breathe. The nurse told me that he had been struggling so they had to put him on the cpap machine. It just nodded my head and accepted this new normal. I could hardly see any of his face, all puffy and covered in tubes and tape. His beautiful dark hair was hidden under a hat and everywhere you looked he had wires coming out of somewhere. It just didn't feel real, that this was my baby. The one who had been inside me less than 24 hours ago. I'm not sure how long I stayed, but eventually I left and returned to my room to sleep some more.


The next day or so are such a blur now, a few more people visited, I was recovering well from the birth and was discharged the very next day. I hadn't even thought about the fact that I would actually have to leave the hospital and separate myself even further. We'd been able to hold Rohan for the first time since he was first born that day and it felt a little like the bonding was starting to happen. Then I had to leave him. On the drive home all I could imagine was a long string connecting myself with Rohan getting longer and longer, stretched thin and fragile. Our tie was being pulled apart and I don't think it recovered for a long while. And then so our weeks of commuting back and forth began. We split ourselves between trying to be there for two children, to accept and understand all that was going on. I think I just shut down. I don't think I faced it or coped with it well. We just got through each day, sitting by a tiny cot, surrounded by beeps, wires and alarms. Of course we made progress, we moved wards and beds a number of times and gradually, ever so slowly crept towards the unspeakable goal of home. Looking back I have no idea who these people were, the ones who got out of bed every morning and took Theo to school, then drove to the hospital and tried as hard a we could to care for our little baby. I tried all I could to bond, and we did. Leaving everyday was heartbreaking, but I had to do it, so I did. But it just wasn't the same. I know I wasn't really me, and I couldn't really let much of it sink in. I know when my sister first came to visit I couldn't look her in the eye or talk to her properly because I knew it would be too painful. She knew I wasn't ok, but I wasn't ready to face that. I had to carry on and I had to cope. It's like it didn't happen to us.


Eventually it did get easier, the amount we could do ourselves for Rohan grew and we became much more confident. Our trips to hospital became routine, we didn't think too much about it except when logistics got in the way. Theo was able to interact a little more with Rohan and it felt like we were making progress. The weaning off of the C-pap machine was a massive step, which meant we could move to the cardiac ward. It became more and more clear that he probably wasn't going to have surgery, and whilst we had to deal with the hugeness of Rohan being diagnosed with Rubinstein- Taybi syndrome (something which you know is something I'm still coming to terms with) it felt like we were finally getting somewhere. This was our life now.


So now that Rohan's a year old I feel confused. I feel like it can't quite be true because he hasn't been with us for a whole year. We were robbed of a few months of him and it still feels as though we're catching up. It feels strange to tell people his age too, because to me he seems to only around 6 or 7 months old. I know that it always goes fast, but this actually doesn't feel right, like I've got my dates all wrong. I guess it feels a little off because I don't look back at this time with fondness. With Theo we cooed over photos of him as a squidgy newborn, snuggled up against our chests or pulling sweet faces. But with Rohan we can't. We couldn't see his face or hair, we couldn't pick him up or walk around with him with ease, we had to leave him every night to sleep on his own. We had to feed him through a tube, we had to listen to the noises of the machines monitoring his oxygen levels and watch as he was prodded and pricked for bloods for tests. Whilst I was happy he was finally here, it wasn't a happy time. We were sleepwalking through our routine, waiting for news, trying to make sense of it all. I think Rohan's birthday will always fill me with jolts of unhappiness, when we realised we wouldn't be able to take him home as soon as we liked, that our journey will always be different. I guess I will always think about or remember how it should have been, but wasn't.


Of course there's much to celebrate, and we 're so proud of how well Rohan has done. He's developed and changed so much, in his own way. We've been supported so much by family and services, and have worked so hard ourselves. To think he used to have most of his milk via his ng tube, to now be able to manage it all orally. He's weaned onto puree food and has dabbled in a few more solid bits. He's showing us more and more he wants to interact with people and things around him, reaching and grabbing for everything. He's become so much stronger physically, and whilst he's certainly 'delayed' he is still developing and learning, and is now sitting so much more confidently. But just more than anything his little personality shines through, he's so happy and content and very much loves to laugh. Dancing, singing and tickling make him giggle his funny little laugh and he can't take his eyes off his brother. For it is he who he adores the most. He loves to reach out and touch your face and draw your face in close to his, for what I like to think is a kiss, but is more of an open mouth slobber. He likes to shout, gurgle and coo and hates to be alone, if you leave the room you can hear angry little shouts of attention seeking coming from his high chair. His feet are one of his favourites still, and he likes to impress by eating them and holding his legs straight up. He has just started to shake his head and often it's definitely in context to him not wanting something, and it's just about the sweetest thing. He loves to hold and play with the basket the holds most of his toys, and puts it on and off his head. I love it.

I can't imagine our family without him, however long he's actually been here at home with us. I know however hard it has been, and may be in the future, we have been given a gift. Rohan, we love you more than you can imagine.


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