Staying Positive

It seems fitting to share a post about gratitude at the end of Baby Loss Awareness Week. Sadly, like all of us, I know many families who have lost a little angel. I've given our own little miracle an extra cuddle tonight on behalf of all those parents, as I'm sure many of you have done this week.

 

Which really does put things into perspective for this post. 

Our family has had its own tough ride over the past three months. It has felt on occasion like every time we've taken a couple of steps forward, we'd encounter a setback. Fortunately however, things seem to have settled down and we're having a good run of things going to plan... I've probably just jinxed us now!

Since opening up on social media we've received quite a few comments, both publicly and privately, about how we're managing to stay positive, so I thought I'd use this post to talk a little bit more about that. 

Rory's Smiles

For starters, just look at his little face! It's really difficult to be sad when he looks at us like this. Lately he's become so smiley, and is developing so well; he's very alert and starting to gurgle in response to us talking to him. We're so proud that he continues to grow into a happy little boy despite the trauma he's enduring. 

It's not to say it isn't affecting him. Every now and again you can see the pain get to him just before his next round of medicine is due, and he has a very distinct 'pain cry' which just breaks our hearts. Also, when he goes into theatre he has to have his last feed at 4am, with him sometimes not being operated on until late morning. At the moment his surgery is weekly, so every week we're having to console a hungry baby for hours on end who doesn't understand why his mum and dad are cuddling him but not feeding him. That's tough too. 

We're thankful that he won't remember this. And we make sure he has lots of cuddles, milk and playtime so that he continues to show us that amazing smile. 

If he can be so positive about the situation, then we must too. We see it as critical that we are just as cheerful, in order for him to grow up carefree and content. It really does go both ways - we need each other. 

Perspective

There's nothing quite like putting things in perspective than nearly losing your 3 week old baby. Since that first day on ICU we've been grateful for every moment with him. He's incredibly lucky to be here so we aren't taking that for granted; yes, he is losing his leg, but he's here with us. It's trade I would always make without hesitation, just as any parent would. 

There's also something very humbling about Sheffield Children's Hospital, particularly the Critical Care Unit.. There are so many poorly children in there; children with much more severe disabilities, children with cancer, children who don't make it home. Our heart breaks for every single parent in there. For us, knowing that we can take Rory home after his operations, and knowing that he's going to be absolutely fine in himself, makes us one of the fortunate ones. Our friends and family with "normal" children (if you excuse the term) feel sorry for us for going through this and for Rory having to be in this condition. We're offered sympathy and emotional support which, by the way, is incredibly appreciated and often much needed. But the environment we find ourselves in on a weekly basis, this whole other world that people don't often get chance to see, makes us thankful for what we have. And what we have is an absolutely wonderful little boy who will go on to live a relatively "normal" life in the grand scheme of things. We're lucky.

Here's another little dose of Happy:

Incredible Technology

The year is 2020. Thirty years ago, the internet was invented. Thirteen years ago, the first iPhone was released. Six years ago, Amazon brought Alexa (and with it, AI) into our homes. Today, research is being done on prosthetics and we can only imagine what technology is going to be available in five, ten, twenty years time. 

When I think about Rory at ten years old, his life will have barely begun. Yet there will have been huge leaps in technology that will make his disability so much easier to cope with. Who knows- by then his prosthetic leg will probably have an Alexa of its own, not to mention a fitness tracker/data reader, interchangeable add-ons, and no doubt his own WiFi router... ! 

That's certainly something to be positive about.

Opportunities

Great parking spaces. Skipping the queues in Disney World. Thanks Rory! 

Some may consider it crass to make light of Rory's situation but we find that humour is a great coping mechanism, and all part of living on the Bright Side. 

The reality is that Rory will be given so many opportunities that his able bodied peers may not. If he wants to become a Paralympian, he'll most likely find lots of doors opening for him from a young age, in whatever sport or hobby he wants to take up. The 2012 Paralympics opened a lot of people's eyes to not only the 'normality' of amputees, but also their ability and potential. Nowadays the loss of a limb isn't quite the disability it was several generations ago, and it is certainly less of a taboo. Rather than being something to hide away, it's something to be celebrated. And that's how we intend to treat the situation; Rory's leg is a celebration of his fight, a celebration of what makes him unique. 

Pete has found inspiration in a recent Netflix production called Rising Phoenix; a documentary exploring the great achievements of amputees. I've not been able to bring myself to watch it yet,but I'm sure it will eventually. 

Just yesterday we watched the lighter yet just as true a story; Dolphin Tale. The film being aptly named, Winter the dolphin suffers a life-threatening injury to her tail and requires a prosthetic in order to swim again. 

Naturally, there were tears! But what a heart-warming story, one that we recommend to anybody. It's very Disney, but also very humbling.

Mindset and Personal Development

Over the past five years or so Pete and I have both become more aware of the importance of personal development, and the power that a positive outlook can have on your life. The idea of "I want to achieve it, and I will" is something that we feel is absolutely critical. Pete in particular is a reader of personal development books, and I've absorbed that attitude from him. We also have some very driven friends who likewise value the importance of self belief. Their support in particular has been invaluable when we've needed little boosts or reminders of Rory's potential. 

Goal setting is also important to us as a family; we have a goals board pinned up in our kitchen with print outs of our individual as well as family goals, whether that be a holiday to a hut in the Maldives, a particular piece of art I have my eye on, or even something as simple as a new BBQ. From the little wins to the extravagant dreams, we've been 'ticking off' our goals board for years and find that the benefits of visualising our aims help us tremendously in achieving them. 

These are some of the books that Pete, and those friends I mention, particularly value when it comes to developing a great mindset. They're worth a read:

 

So what does this have to do with Rory? 

The idea of visualising something that you want, no matter how big or small, and pinning it to the extractor fan in the kitchen is, in a way, how we intend to raise Rory, and also how we want those adults around him to speak/think/act. If he wants to learn to ski, it will go on the goals board. (Ok, I admit, us teaching him how to ski is already on the goals board...). If he wants to learn to ride a bike, or wants to save up for a particular game, or visit a particular place, we'll encourage him to think pragmatically about how he can go about achieving it, but most importantly never let him doubt for a second that he can. If he wants to put a gold medal on the goals board, he can. If he wants to put the cockpit of a NASA rocket on there, he can. If he wants to put a puppy on there... well, maybe we'll have to rethink that one...! To be honest, even if he wants to focus on something as simple as a new pair of wellies, to us its about the goal setting as a process.

The point I'm trying to make is that in order for us to stay positive through this trying time, we have to believe that (a) we'll get through this if we believe we can and (b) Rory will have a fantastic life, achieving anything he sets his mind to. He will feed off our positivity, just like any child learns from their parents, thus reinforcing the importance of us staying optimistic.

Acknowledging the Challenges

It's a common fact that you can't be happy all of the time. Despite everything I've typed so far, there are times when I really struggle. One thing that triggers those wobbles is when I hold his little foot (the one on the bad leg), that one day soon we know is going to be removed. I am having to hold back tears typing this now, because those beautiful little toes are so perfect to me, and losing them feels like losing part of him. 

But no matter how many times I kiss that soft pad of skin, it doesn't change anything; he just looks at me funny, probably wondering why I'm squeezing his foot and crying. As he grows up Rory will encounter his own share of doubts and challenges; maybe if he struggles to pick up a skill like riding a bike as quickly as the other children. Some children may pick on him for his 'robot leg' (but he'll also have some friends who will think it's really cool). Sometimes he might just want to blend in and not be whispered about. As much as we can surround him with love and positivity at home, we also have to let him know it's ok to feel a bit rubbish sometimes.  Raising him to know that he's allowed to face challenges- expected to, in fact, but that helping him through them is just part of what family is all about. People are allowed to break down sometimes, and that's totally ok. 

Even lions aren't brave all the time. Didn't Mufasa teach us that?

So to conclude what has turned into quite a lengthy post (sorry!) ...

It's all about looking on the bright side of life *cue Eric Idle*.

Photo credit: Monty Python.

And just for good measure, here's one extra smile from our brave little lion:

In memory of all those little ones. Break the silence.

Photo credit to sands.org.uk