A year on

Hoping that Oliver would just magically awaken one day and be just like all the other babies slipped away week by week, four weeks to the day of him being in the neonatal unit we were told that the consultants wanted to talk to us as our results were in. 

Mike hadn’t come into the unit that morning as he was trying to sort out our front so that when we eventually managed to get Oliver back home we didn’t have to fight the bushes to get him out of the car.  Before leaving Mike had joked saying ‘I bet because I’m not coming up they have the results’

We’d established a very hamster wheel routine of get up, eat a bit of breakfast, go to the hospital, stay until around 1. Go home do a few bits and then either go back for the late afternoon feed or the late night feed and a cuddle. Then go home and sleep. 

Or at least try and sleep.

It’s not so easy to sleep when the little sausage you carried for 9 months isn’t where he was supposed to be. 

So this timea year ago we were hopeful we’d get some answers and be able to start making some plans. 

We’d been told what they were testing for so had already done a little bit of research but because there were a few things we couldn’t single into anything. We’d joined a hypotonia group as we knew he was floppy and we were reaching out to see if there’s anything we could be doing to help him.

Ward round was about to happen so after frantically messaging Mike and ringing him to tell him to get up to the hospital because they have the results, we had an agonising wait while they checked over everyone else’s baby and we waited in the parents kitchen.

We were called through and sat down and explained that the results had come back. 

‘The results have come back and he has something called prader willi syndrome’ 

You know how in films when people are told about life changing news there’s a kind of muffled silence where your brain is processing news and can’t take anything else in – well that happened

The nurse who we spent most of our time with cried. I cried. 

Looking back, I thought at that moment I was sad. That I was upset that we’d not got what we wanted. We wanted a baby that we could just take home. I realise now that the cry was relief. There was no more unknown of ‘what if?’ , ‘why?’ , ‘will he come home?’ , ‘if he does will it be by Christmas?’ There was a new unknown but we knew there’d be a path that others had been down.

We made a call to my dad and Mikes mum as they were in work and then went off to do the visiting to give out our news. A comment from Mikes Mum sticks with me, ‘you seem ok with it?’ 

I think every couple are different when receiving life changing news. Some retreat, some take a while to accept, some go into denial. I’m fortunate enough to be in a relationship where we both have a mind set of ‘let’s just get on with it’. This news had the potential to make or break us and all it did was make us stronger.

Being compulsive planners we went straight off and found groups. Every prader willi syndrome group on Facebook and the welcome and support that we received off the families was amazing.

When I put up our diagnosis on Facebook I mentioned that if anyone has any questions please feel free to ask. I still stand by this. After the status went up and the likes etc that was a perceived support system. Only one person sent me a message to talk to me privately about it and ask the questions that I think most people are frightened to ask. Please, please never be frightened to ask about it, it’s also never too late to ask. Don’t think because you didn’t ask questions at the beginning that you can’t ask now.

In the past year we’ve come so far, I’ve had wobbles but when I look at where we started and how Oliver didn’t move and wasn’t able to feed and now we have a baby that you can’t take your eyes off because he can roll himself to the hallway, we may not be crawling but we are sitting independently and we can shout dada over and over and over. Sometimes we remember to shout mum but it’s mainly dada. 

The prader willi world we thought we were entering when we were diagnosed is so far from the truth of what we are currently living.

For any newly diagnosed parents. As scary as everything seems now, I can promise that a year down the line you may not have forgotten all those feelings of worry but they will stop. I now have a crazy one year old, who other than being a bit slower with some of the milestones that babies are ‘supposed’ to have hit by now, you wouldn’t have a clue that anything was ‘up’ with him. He smiles and laughs more than any other baby I’ve come across and he makes me feel proud every single day. 

For those that have stuck by the three of us all the way through and regularly ask the questions about what’s going on and how is he and how we are collectively, thank you. It’s not always easy but having people that are supportive makes everything so much easier. 

Oliver at 1 month, 6 months and 1 year old

Thinking and thinking and thinking (some more) about the future

So over the past few weeks, I’m not ashamed to say, I’ve had a few wobbles. I have, I know that I will continue to have them and I’ve been reassured by other pws parents that it’s particularly hard and I will always have them, I just need to turn them into something positive.

All parents worry, it’s completely natural to worry about your child’s future. How you can and will support them to be the best they can possibly be is a thought that’s on every good parents mind

The problem that I currently have is I’m a compulsive planner. Those that know me well, know that even down to nights out I’ll constantly want to sort plans out for it. Where, what time, what are you wearing? I like reassurance that I know what I’m doing and can plan around that. Last minute plans are pretty much a no go for me or if I do try and run with the plans I feel uncomfortable and stressed the entire time.

I feel like the ability to plan has been completely stripped away from me

I understand I should be taking each day as it comes. This is what everyone tells me, it’s actually what I tell myself. The compulsive planning part of me doesn’t actually understand this.

I’m already starting to realise how my relationship with food is going to change. Well it already has, the amount of chocolate and biscuits I’ve eaten since Mike went back to work is unreal. 

This is going to have to stop

The way I cook is going to have to be flipped on it’s head. I love food, anyone who knows me knows how much I love to eat. I also like to cook with butter (makes everything taste better) I’ve got to now form entirely new habits which, when you’re a creature of habit already, isn’t very easy. 

For the past week I’ve been trying to make more balanced teas….that being the balance is Mikes is really healthy and mine is not so healthy!

I don’t want anyone to think that I’m not more than willing to do this, I love Oliver more than I love bread or biscuits or even chocolate. (I love chocolate so much – so he’s a lucky boy) I don’t really drink, the last time I was drunk was over a year ago and before that it was probably a good four or five months earlier. I don’t have a casual drink, I don’t actually enjoy the taste of alcohol, I’d rather sit on the couch and eat than have a glass of wine/gin and lemo/vodka and lemo. 

I’m not going to be able to do that any more 

We’re going to have to start eating at set times, in set places. I’ve been looking at the layout of the house. Those that have been to the house know that there’s no door on the kitchen….this needs to change sooner rather than later. We have a living room- diner. I think that may need to change too. 

Talking to other parents and watching what they’re doing there’s the constant theme of a locked kitchen door/ locked cupboards/locked fridge.

I know that all of this is a little further down the line. He still can’t even take a full bottle but if my maternity time off already has taught me anything it’s that time goes by SO quickly. Before I know it he’ll be starting on purée and then lumpy foods and then want to have little snacks and taste what I’m eating. So my diets going to have to be similar to his so that if he wants to share my food I never have to deny him it. I’m already going to have to deny him so much that I can’t deny him what I’m going to eat in his company. 

The unknown is the hardest thing for me. So many people ask questions about how things are going to pan out and I can never give them a straight answer because I quite simply do not know. All parents live with the unknown as no child’s future is set in stone but for those of you with children that have no unusual qwerks, no one ever asks you how things are going to go. Now don’t get me wrong here I’m glad people are asking me because they want to get to know him, they’re curious. So if you’re reading this and know you have asked me, this is NOT a dig at you. I want people to ask away and want to talk to them about the unknown but just to understand that some days it’s easier to talk about and other days it’s not.

I’m also thinking about how it’s going to change relationships with people. Food is a huge way that both Mikes family and my family socialise. We eat together, we all love to eat. We’re hopeful that we can establish patterns with them before he gets to an age where food starts to become an issue. Free for all food will have to stop as it encourages temptation.
I’m very aware of how much this post is talking about food now -it would appear that my biggest worry for the future is probably food. The struggles that Oliver will have with his mobility and building him up don’t seem to trouble me at all, possibly because once they’re sorted they are done. Foods going to be a constant battle for us and as an emotional eater I fear having to hide somewhere to eat the naughties that I enjoy. I’ve never been good at diets, mostly because my weight stays consistent so it’s never been a worry, three months after his birth I’m lighter than before I found out I was pregnant. I also have the ability to eat a piece of chocolate and be satisfied, I don’t have to eat a whole bar. So I worry about my struggle with this huge change, I’ve never had to be really ‘good’ with eating. I don’t understand calorie counting. 

I’ve had probably too much time to myself the past few weeks and things have played on my mind. I’m still grieving the baby that I thought I would have but didn’t even realise that I’ve been doing it until talking to people. Before we found out about Olivers condition I planned on keeping all of his little baby grows and first blankets and making a memory blanket that could be passed on to his first child. Oliver has an incredibly small chance (and I’m talking tiny here) of having a baby. He’s condition means that he probably won’t get to sexual maturity or if he does it will be late on and they’re often infertile. There have been rare cases where they do but we’re almost certain it won’t happen.

I’m still going to make the blanket. There’s no reason that I shouldn’t but it breaks my heart a little that he probably won’t experience this. I expect that it will become his comforter instead. 

As difficult as turning sad thoughts into positive ones is, I’m glad that I’m able to do it. Otherwise I’d go insane. 

I’ve had my first experience of seeing a friends baby do things quicker than Oliver and I know it won’t be the last. I expect I’ll probably cry every time this happens. Not because I’m sad that Oliver isn’t doing it yet or is behind. It’s just a bitter sweet feeling. I’m so happy that they’re moving along so well but I’m feeling a little left behind but I know I’m not left behind nor is Oliver! He’s just taking his time and it gives me that little bit more of a push to ask about physio, to push to get the other help that we need. It’s an incredibly complex feeling that is very difficult to explain. I imagine other pws families can completely relate to this

I think to sumerise this post I worry that my inability to control the way things are going but I know that’s life. So for now it’s just deep breaths and time to carry doing the best that I can to help make Oliver the best that he can be.

…I can’t worry and stress to much when I have this to look at every day ….


…and when he continues to keep making so much progress

St. Caths spine appointment 

This morning was Oliver’s scan.

For those who aren’t aware, Oliver has a dimple at the base of his back with a tuft of dark hair. This is often linked to spina bifida.

It had been noticed from day one but they didn’t have any concerns. Then at his last hospital appointment the Dr decided that it would be best to ‘just check’. So we’ve had a bit of a worrying wait. Not that it would matter to us if it was spina bifida but I think it’s fair to say that we already have our share of worries and potential problems for the future.

If there is a god, it surely wouldn’t throw something else in the mix to test us?

Well there must be, the results came back all clear.

Nothing unusual found and the lady who did the ultrasound reassured us that her girls both have a dimple and it’s nothing to worry about, just the way he’s built.

2017 is already starting off well, let’s hope it continues!