25 October 2016

So that was Summer; part three


We arrived back from our Cornwall holiday for a quick pitstop back in Bristol before heading back East, to my hometown for a friends wedding and to see my dad. It's always a weird sensation going back with my little family, showing them the places of my childhood. It was the first time Rohan had been there too, so that was good to feel like we were introducing him there. We spent a few days there before Rob, Rohan and I headed to Mersea Island for our second wedding (two in two weeks!) and had such a great time.

We passed the rest of the time spending it on little day trips to castles, walks around parks and climbing trees. It was a good Summer. Our first as a family of four and we felt so lucky to be able to take a holiday all together at last!

17 October 2016

Rohan's weaning journey


So I've been meaning to write about Rohan's weaning journey for a while now, but you know, time slips away and before you know it, its two months later...

I guess I should start with the Nasogastric (NG) tube, because that was such a major part of Rohan's care since he left hospital, and for us such a significant journey. He had a feeding tube in since the day he was born, even though he wasn't allowed to have any food actually go into his stomach. He had a tube in his mouth which then eventually got moved to his nose and there it stayed. He eventually was allowed to have small amounts of milk and we progressed from there. We tried to breastfeed, offering it to him before he was due his feeds, which were regulated and always at set times. But because he'd spent a good few weeks not using his suck or having anything by mouth I think he just didn't know what to do, or wasn't strong enough to do it on his own. So we eventually thought we should try and offer him the bottle too. He was having breastmilk still that I was expressing around the clock. The bottle was a little more successful and eventually I stopped trying to offer him the breast as much because getting him to take something orally, became the most important thing. We were working hard to not need the NG tube at all.


11 October 2016

Taking the scenic route



So I've wanted to write a little about this for a while. You all know how much I've struggled, in fact am still struggling to accept that things are different to how we thought they would be and it's been such a difficult journey to accept that our lives aren't going to go how we planned them out. But that's the nature of life right? We can never plan or foresee the future, things don't follow a linear line and we will never know what's just around or the corner, or indeed why this particular fate has befallen us.

Things are always changeable, plans fall through, things don't go as expected and we are given unexpected lessons and gifts. Perhaps at first it's hard to see how something can be a gift, how the hard times can indeed lead us to better times, open doors to worlds we never expected or dared to think of. Maybe it's our chance to let go of the familiar and embrace our chance to be lifted out of what is perceived to be a "normal" life and actually really challenge ourselves and prove ourselves as strong. If everything was easy we wouldn't appreciate the better times half as much. If we never knew pain or sadness would we feel happiness and love as strongly?

I know it all sounds a little deep and waffly, but I've been really trying hard to change my perception of this life that has chosen us. I'm trying to stop comparing Rohan's progress to the babies I don't know but see online or in everyday life who are developing better than he is. Babies born after him learning to do things he's still far away from achieving, if I think about it too much or look for too long my heart sinks and I feel lost. But I need to remember that Rohan is different, he will do these things in his own time, and I can be ok with that. In fact I watched this short film about Down Syndrome last week and I loved the phrase that said "she will be able to do all these things, we're just taking the scenic route." For once I felt like someone had actually put the way I'm feeling in a positive way, that so much about having a baby with special needs is about all the hard bits and the things you'll miss out on or how everything will be different, and whilst I know that these things will still be there it's so easy to overlook what positives it can all bring.

When Theo was a baby is was hard. We had the no sleep thing, the constant breastfeeding, the irritable baby who wanted to be held all the time. I had so many moments of not knowing what I was doing or if I was doing the right thing, constantly questioning our parenting choices and methods. I know perhaps a lot of this has to do with us being first time parents and our whole world being shaken up, but this time it all doesn't seem as hard. If you take out all the medical side and problems we face, and perhaps look past the developmental delay and the need to compare, things haven't been all too bad. Rohan is a very happy baby, he hardly cries or if he does it's easy to console him with a quick cuddle, he doesn't really fuss. He sleeps through the night and has done for most of his life. He's got himself into his own routine and takes regular naps in the day and is just content and self soothes. Rob's been able to form a strong bond with him a lot earlier than he did with Theo, and he's happy to be left with family members allowing us time to ourselves and perhaps our independence back a lot earlier than usual. I've already spent a few nights away from Rohan (aside from the 7 weeks when he was in hospital and we had to leave him, which was heartbreaking) and on the whole it seems as though our lives with a new baby has flowed pretty well. When we went to a couple of weddings over the summer some people commented on how much of a "good baby" he was (I definitely don't think a baby can be either good or bad btw!) probably because he didn't cry or interrupt and just fed, slept and was happy to just sit and be carried around. I wonder if perhaps he was a "normal" baby that he might have made more fuss and been a pain to take to weddings, and would people have been annoyed with us? I wondered whether this ideal of a "good baby" is something people expect, but usually isn't the case. Is it because of Rohan's genetic condition that makes him be like this, and is this how all babies are expected to act?

Anyway, I'm going off point. What I'm trying to say is that despite all the upset and worry there have been unexpected positives to all of this. Yes it's stressful and upsetting to think about the future and how it will be, but on a day to day basis, in our own little bubble it's good. Life is busier, full of appointments and school, but Rohan is easy to bring along, to hang out with. I've noticed to that I've found myself celebrating even the smallest of milestones even more, such as yesterday I gave him a little finger food and he guided it to his mouth perfectly and started to have a good chew. That's not something he could do last week and I was over the moon. I often hear people say they wish the baby bit would slow down, where you blink and they're no longer a squishy newborn but a sitting, crawling almost toddler. In some way at least we get to enjoy these early months for a little bit longer. We get to take the scenic route and I'm going to make sure I take in the view as I go along.

Rohan you little champ.


Back to Top